Walking Through Dementia: A Caregiver’s Journey of Faith and Grace

I originally published this designated webpage on 7 Dec 2023. Numerous entries were entered thereafter until 24 July 2024, when I started dating the entries. In the beginning of 2021 my wife, Peggy, who was 75 years old at that time and whom I love dearly, started showing the initial or mild signs or symptoms of dementia. These signs or symptoms have slowly advanced over time. What follows is what I have learned and what I am still learning; consequently, this dedicated web page will be a “work in progress”. The provided content will be added to and updated throughout as time permits.

I’ve written previously about my wife’s condition in individual posts and shared some of what we have gone through. You can view these posts here, here, here, here and here.

Neither of us has ever walked down this road before. Obviously, we are both Christians and our reliance and trust is in God, who has and is sustaining us both through this journey with and through His grace. 

What I am sharing are “lessons learned” along the way. These are not easy lessons to learn. They tear at the heartstrings of both of us and most of these “lessons learned” have been gained by the hard road of experience, which include some successes and some failures. I’ve done my homework and dedicated a substantial amount of time to research to educate myself about dementia and learn about the responsibilities and requirements of being a loving caregiver. But what you learn (knowledge from words) and what you experience (emotions and developing greater trust in God) are two different sources.

I am not a professional caregiver, nor am I any kind of medical authority. I’m just sharing what I have learned while trusting in God to direct my steps and bring comfort to my wife and myself, as we walk down this path that has unfolded before us. 

I hope that our story can offer encouragement and support to others facing similar circumstances. May you find comfort in knowing you’re not alone, and may God’s peace be with you every step of the way.

HIGHLY RECOMMENDED RESOURCES
Right at the onset, there are two sources of excellent resources that I want to draw your attention to and highly recommend. The first are free videos that are available on YouTube and the second are two free guides that are also available on the Internet. Both of these resources are freely provided by:

Dr. Natalin Edmonds, PSYD ABPP
Board certified geropsychologist
Founder of Dementia Careblazers
Creator of the #1 Dementia Training channel on YouTube

The free videos cover a wide spectrum of situations that a Dementia Care Giver may encounter, and the two free guides provide detailed information and guidance for (1) Care Givers for a Spouse or Partner, and (2) Care Givers for a Parent or Non-spouse. Dr. Edmons also has a paid online course and additional options available , should you wish to participate or invest in the online course.

The link for her free video channel on YouTube is here and the link for the two free Care Giver Guides are here. I personally found the free videos and the two free guides she provides very informative and helpful.

MILD DEMENTIA

LESSONS LEARNED

CORRECTION
No positive purpose is served by reminding someone who has dementia that they are mistaken by what they recall or what they cannot recall. When we correct them, all it does is remind them that they have memory loss issues that will, in all probability, only get worse over time. Their minds cannot now retain the correction that we provide. Our mistake when we correct them is that we expect them to remember the correction. Part of the learning process with caregivers for loved ones with dementia is to retrain our own brain from what we normally expect to happen, to the reality of what happens to those who suffer from dementia.

EFFECTS OF DEMENTIA
Dementia affects not only what the person cannot remember but also what the person does remember. Thus, their inability to recall someone whom they may have seen on the street yesterday becomes their reality of continually remembering someone on the street whom they currently do see today, as someone they have seen previously, even when such is not the case. It’s almost like their mind is trying to compensate for what they can no longer remember by remembering what has not happened. There are variations of this false remembering pattern displayed through the advancing symptoms of dementia. And until one grasps what is taking place in the loved one who has dementia, it can cause the unsuspecting caregiver considerable frustration. The initial learning curve of adapting to interacting with someone who has dementia can be steep.

In addition, sometimes their minds will fabricate inaccurate memories, or their mind seems to invent memories to explain how a misunderstood incident has unfolded in their own mind. They may also infer that we have been critical of them, or unduly harsh with them, when in fact we have not. The “Rule of Thumb” is to initially expect the unexpected and learn to be gentle in all of our responses.

Adapting the caregiver’s emotions to the reality of our loved one with dementia takes time. It’s a different way for the caregiver’s thinking to adjust to, which takes time to grasp. During the initial stages of dealing with our own frustration, our own overreaction can be problematic. When this happens, confess your own overreaction to your loved one who has dementia, if you have overreacted and also to God and expect God’s grace to be waiting for you anew the next day. Constant reassurance of our love and concern for our loved ones with dementia is always beneficial, even when we may be falsely accused by them of doing otherwise or while we are in the process of learning ourselves.

Furthermore, experiences which you know they have previously gone through become realities for them that they are sure or convinced they have never experienced. Correcting them will not change their reality because their reality has or is changing, and they no longer remember these previous experiences.

The most difficult part of initially interacting with someone you love who has progressive dementia is adapting to their reality and coming to understand what they are dealing with. In essence, we (the caregivers) are in the process of retraining ourselves on how to adjust our own expectations that are no longer valid when interacting with a loved one who has progressive dementia. This in itself takes time but it does become easier.

POSSIBLE NEGATIVE REPERCUSSION PROCESSES

MEDICATIONS
Processes that may involve negative repercussions, such as forgetting to take their medications or taking them again after they have already taken them earlier, can be avoided by us assuming this responsibility for them. Gain their concurrence with this process.

MONETARY CONCERNS
Also, responsibilities associated with dispensing money, fall into this category. My wife used to handle all of our online banking requirements but I have now assumed this responsibility with her concurrence. Negative repercussions can be avoided by adding additional layers of security (two-step authentication etc) to the process so that they are more unlikely to be able to independently access or dispense unwarranted monies. A partial explanation for this change in process regarding these additional layers of access control as being necessary is to indicate they offset or hinder unauthorized access, which truthfully is always prudent. 

All of our normal monthly monetary expenditures are jointly agreed to, and all outside-of-the-ordinary expenditures are also mutually agreed to. In addition, to facilitate and foster my wife’s individual preferences, she has been provided with a modest, limited amount of offline funds that she alone makes decisions on, without the need for my concurrence or agreement, to use or disperse as she alone sees fit. This fosters her own retained independence and judgement, which is still important to both of us. My wife still keeps me informed if she remembers, but she alone makes the final decision with these allocated offline funds.

Submitting personal Income Tax Returns is another area that I have legitimately assumed on behalf of my wife via Revenue Canada (we are Canadians).

Other areas of concern have to do with valuable items within their possession, such as costly jewelry (diamond rings etc). They may place these items in a certain place for safekeeping and then forget where they have placed them. If they forget where they have placed them and you are not aware of where they have placed them, finding them can be a problem both for them and for those who are caring for them. This can be avoided by paying close attention to when they are in the possession of the individual (actually being worn) items and then us assuming the responsibility of placing them in a location that WE are aware of when they are not wearing them. Again, gain their concurrence with this process.

It is natural for those with dementia to want to maintain some level of control over independent decisions. Support this independence wherever possible with a combined “teamwork” mentality of each looking out for the other. Solicit their input on decisions where feasible so that they are honestly part of the “team”.  

LOST AND GAINED FREEDOMS
My wife independently and voluntarily decided to stop driving. I supported her decision due to her susceptibility to increased confusion and decreased ability to focus. It was the correct decision to make, out of concern for others and also herself. It is a freedom lost, but it is also a freedom gained concerning accountability and unnecessary stress. Real-life decisions like this for those suffering from dementia are not only important but necessary. I am now officially my wife’s driver and I welcome my acquired position.

CONFUSION
Confusion with relatively simple processes, such as using a cell phone correctly or operating a TV control device, intensifies over time in those who suffer from dementia. Be readily available to assist and jump in when and if required. Patience and understanding are key.

A day-to-day routine and being in an environment where there is little or no stress is also beneficial for those suffering from dementia, thus minimizing confusion. Provide that routine and diminish stress whenever feasible. Being readily available to talk with them and having soothing music playing in the background are also other beneficial norms that form part of the positive environment. Providing choices for meals, which I now solely make and getting outside for walks or drives are also beneficial. Be engaged with your loved one, and provide that reassurance of love and caring for them. Continual reinforcement of our love with attention, hugs, kisses and embraces is always a positive.

Be constantly at the ready to provide repeated requests for clarification on what day of the week it is, what month it is or anything else that might be on the daily schedule.
Note that I said “repeated” because multiple requests for the same information you have already provided previously will be asked for again and again. Respond each time as if it is the first request you have been asked. You do become used to this after a short while.

I’ve noticed a pattern as of late about confusion. Lack of sufficient sleep for my wife definitely produces increased confusion. The equation is straightforward: the less sleep she gets, the more confusion manifests itself. Getting a good night’s sleep is vitally important if this is feasible. Establishing a sleep routine that facilitates getting a good night’s sleep is definitely encouraged by our experience. Peg usually takes one nap during the day, sometimes in the morning and sometimes later in the afternoon, usually just for about an hour and these scheduled naps also aid in reducing confusion. Just a good practice to be aware of. 

There is a consistent level of confusion with what day it is and what month it is, but sometimes it goes substantially beyond that for relatively short periods. Having confusion with recalling what we did during the day sometimes surfaces, and attributing events to yesterday that actually happened today sometimes happens. Most times, these increased levels of confusion are minimal in frequency, but there is a pattern of increased frequency developing. Maintaining patience as a caregiver during these instances of increased confusion is paramount. How the caregiver reacts does have a correlation with how the increased confusion is handled by my wife. Despite the difficulty that the increased confusion presents, focusing on the freedoms and abilities that are still possessed has a tendency to offset the negative aspects of the increased confusion so that it is not over-emphasized. We still have a lot of blessings that we are thankful for and we frequently experience bouts of shared laughter, which is good medicine for all concerned.

PERIOD OF DAY FACTORS
Be aware of how specific times of the day factor into general confusion. Evenings, just before bedtime, sometimes as in infrequently, intensify confusion for my wife. Be ready for it, be patient and don’t let a good day be spoiled by our own overreaction when we (the caregiver) are tired. 

SITUATION OVERVIEW
When I try to place myself in my wife’s shoes, it is not hard to imagine how alarming and difficult it is to lose one’s reference point memories progressively. My own inability to appreciate all the various implications of necessity turned me to God, for His guidance and wisdom throughout the whole of this walk. There are also many hidden gifts presented along the way, and these “gifts” are of God’s grace. More compassion and a deeper love for our loved ones and confidence in God’s daily provisions are also realities. One day at a time, with God’s grace, lifts both of us.

LAUGHTER
Laughter is good medicine. Focus on the positive memories that are still available and reinforce the many blessings that are still intact. Dementia can be slowly progressive and in many instances, the changes can be accommodated by awareness and thoughtfulness.

MEMORY AIDES
At my recommendation, my wife keeps a small book or notepad available to write down thoughts she may want to have addressed when they cross her mind at the time, as these thoughts or issues may not always be available to recollect later. It can also contain a brief overview of close family members who have passed on, as these memories may disappear over time. Having a ready reference to confirm they have passed on or are still with us will help to avoid unnecessary dismay and re-establish memories that she still can retain. Be gentle and always willing to respond to any questions she may ask of you concerning events that have taken place in the past.

CONSTANT TRUSTED RESOURCE
I have explained to my wife that I am a memory resource that she can use whenever it is required and that she can trust me as a resource and that I am always willing to be of assistance. This has proven to be a reassuring and comforting reality for her. Reinforce this memory resource availability often and it can and will become normal to her. Learning to adapt applies to both of us.

AWARENESS OF THE NORM
Some days are almost normal, and once in a while, she may be partially overwhelmed by memories that are confused or gone. The important thing is for the caregiver not to overreact and to accept the changes that surface at times. Most times, these changes are minor in frequency and outside of the normal slow progression. At least this is so in our particular situation. Putting yourself as a caregiver in her shoes helps our own minds, as caregivers to adapt.

OTHER CHANGES
Food preferences may change; accommodate these changes if and when possible. Personal preference characteristics may also change regarding picture placements or furniture positions. Go with the flow and accommodate when feasible. In the big scheme of things, her level of satisfaction and contentment is of greater importance. If the “good days” are reinforced, the positive effects of these good days will outweigh and diminish the effects of the bad over time. Reinforce the little accomplishments of each day so that the gains are not forgotten. Currently, the good days far outnumber the bad days. Both of us need to be mindful of this reality. God’s steadfast grace is a wonderful gift to behold.

COMMUNICATING WITH ONE ANOTHER
Being engaged with one another during the day and evening is important. Our routine is relatively straightforward. When we get up, I make my wife’s breakfast, give her her meds, and I then make the bed. Having fresh fruits on hand and giving her choices for breakfast is normal. I usually handle any grocery requirements in the morning so that the rest of the day is free to do as we want. If anyone is scheduled to visit, which is always welcome, I remind her of who will be visiting today. Sometimes one of our sons will bring over supper, and sometimes we have one of our sons or daughters over for supper. Grandchildren are always welcome of course. These scheduled visits are always plus activities for both of us. If we have any medical appointments, I ensure that they do not catch my wife by surprise. All of our activities outside of the normal schedule are annotated on our big calendar, and I ensure that she is aware of what is on our schedule for today and also the remainder of the week.

We usually go out for a drive daily, as long as the weather is not really bad. Getting out of the house is also important, and infrequently we will have breakfast or brunch at one of our favourite restaurants, which we both enjoy. When the sky is sunny, it does both of us good to get out in the sunshine, winter or summer, it makes no difference. Our daily trips are usually about two hours in duration, and very infrequently we may go out for supper. We play our favourite music in the car and talk about all sorts of things. It’s quality time together and that is needed daily. 

Sometimes we talk about the effects of dementia and how it affects both of us on a serious level. I continually reinforce my love for her, my commitment to her and how I will be there for her as long as I breathe. We express our love for one another frequently. It’s a beautiful thing. She doesn’t speak of fear of what will come much but she has stated how much it means to know that I am there for her, regardless of. It’s a hard thing to put into words but I need her to know beyond any doubt and she needs to know, she wants to know and she knows. Those words do have to be spoken, say them and show them, often.

GOD’S GRACE
I’ve spoken a lot about how God gives us His grace daily. This is also a hard thing to put into words. We both need God’s help in dealing with all sorts of things, including our emotions. There are times when I think that God’s grace will have to be off the charts to fix what I have messed up, and yet He is always there. You would have to see it to believe it. I frequently marvel. The word “gratitude” has taken on a whole new meaning. So many different aspects, so many different levels. Where we are now and where we were when we first got married are light years apart. I frequently have a hard time comprehending how dense I was and where He has brought us. We dated on and off for about seven years before we got married, which has been ongoing for 53+ years now. Five children, many ups and downs. God is more than able, despite our shortfalls. The mist of not seeing becomes a visible path and then a concrete, sure road. TRUST HIM. Think of Jesus as the personification of our heavenly Father, because that is exactly who He is. Jesus said, “He who has seen Me has seen the Father.” This is the truth.

GOD’S CONTINUED GRACE
It’s been a while since my last entry on this page. All things considered, things are still going quite well, although there has been a noted increase in the “confusion” incidents. One of the things that I am gaining in the situation that my wife has to deal with, as seen and experienced from her perspective, is the dire need for compassion and patience. Sometimes my wife will remember the siblings in her family who have died (long term), and sometimes she forgets. It comes and goes, and it is not a constant state of having forgotten. That aspect alone is and would be difficult for anyone to handle. In addition, some short-term memories are retained for a while and then forgotten for a while. Again, it can come and go. 

Peg and I talk about everything, so when this on-again, off-again, memory retention issue raises its head, we discuss it, as long as I can see that she can handle it and discuss it. If she is tired or has experienced stress in her day, I will let it go and discuss it later if needed, when she is not stressed.

Please note that short-term memory issues also have positive aspects. If for a variety of reasons, she has had a “rough” day, the next day offers a clean slate because the emotional strain from the previous day is forgotten. The important things to remember from my perspective are what caused the “rough” day for her and how to tactfully avoid it in the future, if at all possible.

THE ROCKING CHAIR LESSON
I’m going to share what I experienced regarding a rocking chair. My wife had a rocking chair that she used to nurse some of our infant children in. One of our sons asked if he could have it and my wife said he could, so we gave it to him a few years ago. Peg recently decided she would like to add a rocking chair to our living room, so I got one and we bought a tailored cushion set for it. We bought the rocking chair second-hand and only paid $50.00 for it, while the cushion set was new and it cost $100.00. Then Peg said she thought she would like her original rocking chair back, which had been given to one of our sons. I “discussed” this with my son, who had the old rocking chair, and he agreed to return it. It’s these little things that add contentment that can be accommodated that make a difference. Peg and I discussed the “exchange”, our son could have our new “secondhand” rocking chair and we would get our original one back, but we would keep the new cushion set. 

The day our son returned the old rocking chair, Peg told him he could have our new “secondhand” rocking chair AND the new cushion set. She forgot our agreed-upon decision to keep the new cushion set. I was annoyed that she had forgotten but thanks to God’s grace, I did not voice my annoyance. With short-term memory loss, agreed-upon decisions are frequently not remembered. These memory losses are experienced on the fly, and one has to deal with them on the fly. It’s not her fault; if any fault is to be laid, it sits at my door, specifically with how I deal with it. God’s continued grace enters the situation: our son decided not to take our new “secondhand” rocking chair right now, but later perhaps, when he moves into a newer apartment where he has more room. Peg goes to bed, and hubby puts the new cushion set on the old rocking chair. Peg gets up in the morning and “loves” it. Hubby is happy, Peg is happy, and our son can have our new “secondhand” rocking chair when he has room for it, without our new cushion set. I will explain the situation if necessary to our son, but candidly, I doubt if it will be necessary. 

The lesson to be learned here is the consequences of Peg’s short-term memory issues as they may frequently play out, and her sense of well-being TAKES PRECEDENCE OVER my feelings and temperament. Don’t unnecessarily react or overreact; opportunities to correct the situation, if required, will present themselves, OR in the big scheme of things, the loss of the cushion set is really not an issue when it comes to providing an environment that is conducive to Peg’s well-being.

Bear in mind that this all takes place “on the fly”. Also, consider that this is just one of a host of “on-the-fly” incidents and reactions that one will increasingly encounter with a loved one who has dementia. That quiet voice of God’s Holy Spirit telling me to “let it go” DOES have to be listened to and complied with. With God’s grace, I am getting much better at responding positively to His leading. I call it “Fine Tuning My Ears”. 

CONFABULATION
People who have dementia experience both short-term and long-term memory issues, where they forget something that happened yesterday or twenty years ago. That is one side of the coin, but there is another. People who have dementia can also create false memories and believe that what they create in these false memories is actually true. 
Confabulation is the spontaneous production of false memories. Confabulation typically occurs due to brain damage or health conditions that affect the brain, such as dementia.

People who experience confabulation may create memories of events that have never happened. Confabulation can be a symptomatic manifestation of dementia. The false memories that people may create can vary from mundane activities, such as remembering having a steak for lunch when in reality it was soup, to more elaborate or eccentric memories.

When people confabulate, they may tell stories that have some truth in them, and some parts of these stories may make sense. However, people with dementia can also create stories and memories that have no basis in reality and make little sense.

People who have dementia may display two different types of confabulation:

Semantic confabulation: A person creates false statements linked to their knowledge of commonly known facts.

Episodic confabulation: This refers to the creation of false statements and memories associated with personal experiences or events that may have happened in the past or personal plans for the future.

People who confabulate honestly think what they are saying is correct and have no intention of lying. People who confabulate are unaware that a specific memory is false, and they typically do not seem concerned when a person points out their errors. The memories of a person who has dementia and is confabulating may seem highly unrealistic or incoherent, but this is not always the case. People typically create new memories from events and experiences they had in the past. So, in some cases, their stories can be completely plausible and coherent.

While confabulation may be confusing, it can sometimes help people with dementia to cope with their current reality and fill gaps in their memory that could otherwise be difficult or frightening to deal with. Confabulation is a way the mind tries to make sense of the surrounding world when a brain illness causes memory problems.

I will give you two examples of how this works in my dealings with my wife. 

Numerous times when we are out for a drive, my wife will indicate to me that someone we can currently see at a stop sign or walking nearby was there the last time we drove down this street and was wearing the same clothes he or she has on now. I just acknowledge what she has said by stating “Is that correct?” or “Oh, really!” because it serves no purpose to correct her. These are easy confabulations to deal with. 

Other types of false memories can be more difficult, depending on what my wife expects to happen next. When our grown-up children are visiting, my wife may indicate that someone else was here yesterday when in fact they were not. I don’t correct her because it serves no purpose unless it becomes confusing for others. In that case, I will indicate to those present that Peg might be confused as gently as I can. Most times, they will pick this up without anything being said. These false memories are also relatively easy to handle.

FALSE BLOOD WORK REQUIREMENT
Today my wife was of the mindset that she needed to go to the pharmacy to have some blood work done. When my wife sees our family Doctor, I sit in at the end of the appointment so that I am aware of any follow-up work that needs to be done. In our city, blood work is handled at Blood Collection Centers, where you make an appointment, and you need a requisition from a Dr. so that they know what to test for and who to send the results to. Blood work is not done at pharmacies, but my wife thought they were. You need a requisition from a doctor to get blood work done, and my wife thought you could just walk in. I tried to explain this to my wife, but my wife was not overly receptive. I explained to her that this was a false memory and that she could confirm it by calling our family Doctor’s receptionist, who would confirm that she did not require any blood work to be done. After explaining to her what she was experiencing, I provided her with a short handout that explained how confabulation works with people who have dementia. This type of false memory is more difficult to deal with because my wife’s expectations of what happens next do need to be corrected. It is emotional because there is a frustration factor to deal with on her side and my side. 

My wife is resting now, and when she gets up I will tell her that I am sorry if I upset her, that I am there to help her whenever and wherever I can and that I love her. It’s not easy going through this, and I know that it will happen again. Day by day, as gently as I can.

The number of these false memories that the caregiver is exposed to in a single day, can at times become not only mentally tiring but it also has a tendency to physically wear one down. It’s almost like you are climbing a hill of rocks and the rocks keep rolling down as you step on them, so that it appears that no headway is being made. Nothing is solid that you can step on or even maintain your balance. Thankfully, this doesn’t happen every day, but the days in which the false memories are relatively consistent are the hard days. If these days are hard on me as the caregiver, one can only imagine how hard it is on the one that you love who has dementia.

The bottom line is that progressive dementia for the person who has it, gradually diminishes the connection to reliable reality, and I can sense the need in my wife to hold onto that which is consistent and reliable, whether consciously or unconsciously. Frequently, during the day, if I leave the room, she will ask where I am going or what I am doing. On the days when missing memories or false memories are more prevalent, she will do this a lot. One can understand why, and the caregiver can strive to be patient and repeat as necessary as often as it is required, but this begins to wear on you, the caregiver, day after day, if the bad days follow one another for a while, especially as one approaches the end of the day. 

I mentioned previously that I take care of issuing my wife her medications. She takes her meds in the morning and just before she goes to bed. The meds are always the same for each time frame but my wife will consistently question whether I have given her the correct meds in the evening, just before she goes to bed. I usually reassure her that they are correct, and because her meds are in blister packs for each day, I can show her how the meds for the evening are identical to the meds that I place before her. In case you don’t know what a blister pack is, they are cards which contain little pouches where the meds for the morning and evening have already been placed in advance, to avoid confusion and assist with proper administering. In the morning, she does not question, but almost every evening she does. I expect it now, so it doesn’t catch me by surprise, but it becomes part of the expected questioning at the end of the day. She has no memory of questioning me the night before, or the night before that. Again, patience is key, both for me and for her.

This one instance of being patient is not difficult to maintain, but you have to remember that it is at the end of a day in which numerous instances have already been repeated, time and time again. This is where God’s grace continually comes in, reminding me of all that is in play, not just to me, and of the bigger perspective, especially of God’s love that is still available in this broken world. Love gives at a cost, just like God the Father gave us His only begotten Son, and Jesus gave at a cost of what He willingly endured that we might not perish. Love does.

MODERATE DEMENTIA

A NOTED CHANGE (MID-MAY 2024)
I’m trying to think of a way in which I can articulate a change that has recently begun, a manner of conveying how dementia is affecting my wife and me.  The change is significant; it involves the whole state of her being. Her attitude, her mental abilities and the degree to which it affects our communication. It has affected me too because the loss between us is also more evident and we are both having a difficult time dealing with it.

I noticed a change about a month ago, her general confusion gradually and noticeably increased, her argumentativeness also gradually increased, and the verbal and oneness connection we share with one another has noticeably diminished. Peg mentioned to me that the other day, she had a day in which she experienced profound sadness. She didn’t tell me at the time but rather a couple of days later. Peg has experienced touches of sadness before but this experience was different. Deeper and more sustained. 

Instances of short-term memory loss have substantially increased. Before, they were intermittent, being occasional, with numerous instances of her remembering outnumbering what she may have forgotten. During the last month, this has almost reversed. The instances of not remembering now outnumber the instances of remembering. It’s almost constant, and that alone affects literally everything.

Coupled with this increase in short-term memory loss is a gradually increased rate of confabulations, or, for lack of better words, false memories. They are more frequent in number, to the point that they are almost constant. Previously, I could communicate to her the reality of the situation without noting any hostility, but this also has changed. I was a reference point from which she could re-adjust her perspective. Peg has become much more assertive in stating that what she thinks or remembers is correct and has stated to me several times that what I am telling her is a lie. Consequently, Peg’s using me as a trusted reference point has also diminished. 

Normally, since Peg’s dementia became noticeable back in 2021, when Peg experienced a short-term memory loss or even a long-term memory loss, if it affected only her and I, I would let it go, without correcting her. I still do this on numerous occasions, but as of late, what with Mother’s Day having recently gone by, family members visited, and she has articulated false memories of them withholding information from her about their close, immediate family members. Of course, these accusations are not true, but she does not remember. I have had to reach out to them after the fact and explain the situation and provide some damage control so that they understand what is happening. Peg explains these false memories as “new revelations” that have been withheld from her and expresses the feeling of being deceived. These false memories, which involve someone other than just Peg and me, are much more difficult to navigate, as facilitating these false memories has a detrimental effect on everyone. Previously, I could navigate or assist her in re-adjusting her perspective, but such is not the case with these false memories that she now feels strongly about. Correcting her is not an option, as it is met with hostility or accusations from her that I am lying. Damage control to the other party, if required, is the only option that I am aware of. Peg’s perception of me lying to her is relatively new, and it introduces an element of lack of trust and confidence in me that was not prevalent before. I understand what is happening, but the loss is significant to both Peg and me.

General confusion has also substantially increased, on very simplistic things. We still go out for our daily drives and Dairy Queen treats, but now even the simple exchange of normal glasses for sunglasses requires assistance because she has difficulty with handling the sequence of exchanging normal glasses for sunglasses. Responses to what day it is, who is coming for dinner, who was here or who was not here and what they said or didn’t say are much more frequent, as is the necessity of repeating the response.

Normally, I can forecast what the day ahead will be like by how well Peg has slept during the night. If she sleeps peacefully, that is usually a good sign. As of late, she has been re-adjusting the sheet and blanket over me and taking my pillow from under my head because she states that she wants it (plus her own). During the day, especially if she is feeling tired or disorientated, Peg will hum to herself. Now she is doing this during the night, and I’ve noticed that she is moving her arms in the air at times when she should be sleeping peacefully.
One can only imagine the turmoil that her mind is going through, and there is literally nothing that I can do about it other than to pray and ask for God’s help.

My own limitations are becoming increasingly taxed. The increased frequency of short-term memory loss and false memories, plus the break in trust and reliance we have with one another, and my sense of helplessness and reduced sleep, add up over time. Readjustment has become much more difficult. The visual and mental reassurance of God’s grace being witnessed daily has diminished considerably. It’s not that I don’t trust God; I do, but the totality of the need for God’s grace has increased substantially. The reality of the separation of our minds being together as one, as still being doable, is dissipating, and that loss alone is significant. It’s hard to put that one into words.

It would appear that we are moving from a do-able stage into a stage where what we were previously able to navigate through together, manage co-operatively together and still maintain that oneness between us is diminishing, and I don’t think that either one of us is or was prepared for this reality. This is hard on so many levels. 

I know that God’s love for us surpasses our understanding. I know that He will forgive us when we fall short and confess to Him our sins and ask for His forgiveness and mercy, because of our faith and trust in Jesus. I know that God’s ways and thoughts are so much higher than ours or mine. I know these things. All we can do is trust in His goodness for the way ahead. Our need has never been greater, and I believe that God is good beyond our comprehension. My wife and I shall trust in Him.

MATURE THINKING ABILITIES
I’ve also noticed a marked decline in my wife’s mature thinking abilities, the fine-tuning that we develop over the years to prevent embarrassment or needless misunderstanding or inconvenience to others. If anything, this is an area that requires my adapting to her limitations and not mistakenly assuming that her comprehension of a given situation will remain as we have assisted one another in these areas in the past. Today, as an example, we were in the elevator going down to the basement area where there is underground parking. Someone got on the elevator that was getting off before we would be getting off, so I took my wife’s hand to guide her to the side of the elevator, so as not to block the person who would be getting off the elevator before we did. My wife stepped right back in front of this person so that when this person got off, she had to go around my wife to exit the elevator.

Another example is my wife telling me what someone had said, which would normally invite a comment from me, without letting me know that the person to whom we were talking about was still on the phone and could hear what was being said. The candour between a husband and wife, which is assumed to be private between the two of us, is not always the same as it would be if that person were within earshot. That assumption of protecting one another from needless embarrassment or potential misunderstanding has diminished considerably, and is another area for the caregiver to be mindful of. 

It serves no purpose in explaining what has transpired to the person with dementia because their mature thinking capability is diminishing, plus their humanistic defensive mechanisms will or may use confabulations (false memories) to restate what was said or what happened. The thing to be mindful of is that these oversights on their part are not normally intentional, and with increasing dementia, the caregiver can adapt while the person with dementia cannot.

I often equate what my wife is experiencing as being similar to unexpectedly walking on quicksand. That which they used to be confident in is disappearing, and in its place is uncertainty, be it with absent or false, past or current memories. The caregiver faces similar uncertainty because of previously held and continually changing expectations. And while it definitely is not easy to adapt as required, especially on the fly, for the caregiver, at least the caregiver has the mental capability to understand what is happening when it is happening. The person with advancing dementia is losing the ability to comprehend what happened and why it happened at the same time that it is happening. The loss for the caregiver is considerable, but the loss for the person with advancing dementia is staggering. 

And as the caregiver, this is the person you know (recognize) you love and care for. In the end, for those with advancing dementia, for many, even that is taken away from them. I’ve heard it said that dementia is called the long goodbye. That applies to both sides of the coin, to the one who has dementia and to the caregiver of the one who has dementia. Patience, compassion and enduring love, amid ever-increasing loss. I can’t even imagine how this can be done without God’s help.

SLEEP DISTURBANCES
I haven’t written too much about sleep disturbances because, with advancing age, they are relatively common. The recent changes observed in my wife have been accompanied by increasing difficulty with her getting a good night’s sleep. There is definitely an association between getting a good night’s sleep and the stress that she encounters during the day. Maintaining a routine with minimal stress is, accordingly, a positive factor to continually foster. 

We ran into a new sleeping disturbance during our sleeping hours together, which I believe was brought on by a lack of my wife’s lack of sufficient sleep in the preceding couple of days. My wife decided that she didn’t need the thin blanket we have over our top sheet, and decided to remove it during the night, even though I had indicated that I would prefer to have it at least cover me. In addition, she wanted my pillow and literally took it while I was sleeping, which did wake me up. This is not how my wife normally acts; she is a very considerate person. We discussed it the next day, and she didn’t remember doing these things and felt bad for having done so. We prayed about it, and last night things went back to normal. Colour me grateful! She normally takes a nap in the morning, and I made sure that she had a good one. The rest of the day went well; she forgets things sometimes, as is now normal, but we can still discuss them if needed. Our sleeping together at night is a soothing time for both of us, and neither of us would want to lose that if at all possible. Sleep disturbances are common as dementia advances. Hopefully, this was just a blip rather than a foretaste of things to come. 

Update: It was just a blip, followed by a couple of weeks of “normal” days and nights and counting! I am constantly amazed at God’s grace. Sometimes we allow our problems to take precedence over our relationship with God. In other words, our focus is taken off of Him and stays on the problem more than it should. When the waves get a tad on the high side, I have a tendency to do that, but I am reminded of who my source is and that nothing is impossible with God. A common rule of thumb is understanding the necessity and reality of maintaining communion with God and spending the necessary time in prayer, voicing our thoughts and fears and placing our trust and reliance on God. I am learning by experience that all things are under God’s control, and my faith and trust in Him are founded. It doesn’t mean things will always go as I would have them to be, but what does follow is peace in and through the storm.

LEGAL DOCUMENTS
Today was an extremely difficult day. We updated my wife’s will, put myself down as her Power of Attorney and prepared a Living Will to address her possible medical requirements. It wasn’t preparing the documents that was so difficult; it was the after-effects of doing so. It’s hard to put this into words, but tears welled up in my eyes several times during the day. These legal documents are all necessary, but they sure brought home the reality, at least for me. My wife knew something was wrong, and I tried to evade how it had affected me. The Lord knows she already has enough on her plate besides being worried about me. She is such a trooper and the love we have for one another is so special. I told my wife I was going to take a shower, which I did, but I was praying through tears while doing so. Considering what we gave God to work with between the two of us, God has showered us with His grace so many, many times. All we can do is trust that He will continue to do so.

I have also noticed that the accusations of me lying to her have ceased, and there has definitely been a resumption in the level of trust that she has in me. She is taking me at my word more often now and any signs of hostility or ardent disagreement have also greatly dissipated. I keep getting the feeling that God is assisting us with how we adapt and consider one another. This time we do have together, where we can share our feelings and fears and how much we love one another, is a gift that not all are given. I think we are both acutely aware of that.

DIMINISHING BUT STAYING THE SAME
I’ve been trying to think of a way to articulate what is happening, and this came to me this morning. It’s like there is a small hole in a plastic bottle that water is escaping from, yet for some unknown reason, the level of water in the bottle seems to remain constant. I believe that is God’s grace. I can’t think of any other way of putting it. Blips of increased confusion and false memories are still there but they continue to be manageable despite their increase. There is a balance that is still being maintained. My mind cannot fathom all the internal implications that my wife is going through, or even myself for that matter, but we know and trust in our Lord, who does. And we cherish each day. God’s enduring love and sufficiency are so very real.

CONTINUING CHANGES VERSUS OCCASIONAL BLIPS
I’ve identified this portion of my ongoing narrative under Medium Dementia as I am seeing or identifying the transition from occasional blips that eventually right themselves back to a pattern of relative normalcy, to a pattern of more consistent changes that are increasingly becoming the new norm. General confusion has definitely substantially increased, as have false memories or confabulations. The return to what I have been calling “relative normalcy” is shorter in duration, whereas the frequency of general confusion and lost memories or false memories has increased.

The last couple of days have been especially trying for both my wife and me because of the consequences of these increasing changes. This afternoon, out of the blue, my wife was convinced that I did not live with her but that I was only visiting and that in the evening I would be leaving her and returning to my own place. She was also convinced that someone else lived with her in our apartment, but could not put a name to that person. We were able to talk through it, wherein I explained the reality of our living together, but it took quite a lengthy discussion. She also had great difficulty understanding why I did not warn her about this false memory before it happened. I’ve been using the metaphor of “threads” being broken, the “threads” being particular memories and explained that I had no prior knowledge of which threads might break next and that I was not, therefore, able to forewarn her of what I did not know. These false memories are very real to her, and one can only imagine the confusion they introduce into her day-to-day experience of living in the here and now. The realness of these false memories themselves is difficult to explain to the one who has them. I used the example of us expecting our feet to stop going down when we place a foot on the floor, and suddenly it appears to go through the floor. It looks real, or like it is going through the floor, but it isn’t in fact actually happening. This example helped her comprehend what was happening, but it still is very unnerving to both of us because the false memory of me not living with her, here in our apartment together, was both unexpected and difficult to explain because of how real the false memory was to her.

Before bedtime, I approached the subject again with her, and she appeared to be of the mindset that we did, in fact, live together in our apartment and was subsequently OK with that. But then the sleep disturbances of hearing our grandchildren or knocks at the door or hearing a dog in our bedroom made themselves known to her, which, of course, disrupted our sleep. Peg actually got up and opened our bedroom door and then opened our locked entrance to the apartment door to find out who was knocking. No one was obviously there, but when she got up later to use the washroom, I waited to ensure she would return. Her broken sleeping patterns affect my sleeping patterns. Not a big deal if it happens infrequently, but when these sleeping disturbances become the norm, the new norm affects both of us.

These false memories and the sleeping disturbances have been there for some time but the frequency and implications of them are increasing. We can still talk about them and work our way through them together, but the increasing frequency of them is a reality. We’re still OK but the ability to adapt for both of us is more difficult. The ongoing gradual transition from “mild” to “medium” dementia is not easy. I think the keyword to be mindful of during this transitional phase is that it is a gradual transition. The memory threads that break still continue to be minimal in instances, yet at the same time, slightly more frequent. It’s also important to note that new memory threads can also be created that offset the broken memory threads by the repetition of reinforcing reality facts when convenient or feasible. As an example, if you were to ask my wife now (a week later) if I live with her, she would respond that I do. There is no panic on my or Peg’s part, but a general increased awareness of the increasing sensitivity of the situation to both of us. With God’s continued grace, we will adapt and continue to focus on what we still have, despite the changing circumstances. Our love for one another is expressed between us multiple times during each day, and it is heartfelt, as are our prayers for God’s grace and assistance. The priority of my wife’s well-being has taken on an increased awareness and sensitivity.

Update: It’s been about three weeks since my last entry here. Generally, things are going relatively well with minor blips from time to time. Peg speaks more freely now if she encounters confusion, which is a good thing. We’ve had frequent visits from our children; usually, we have them over for supper, and these visits have also gone well. About two or three individual visits a week seems to be a good ratio, as the days in between give Peg time to be at rest within herself. Maintaining a pattern of normalcy of just my wife and me seems to be paramount to the stability of her state of mind, and it benefits me also. We’ve been enjoying the warmer weather outside and the beauty of all things turning green once again. Meals prepared on the grill or BBQ are more frequent, and we ate our supper outside on the patio one evening, which we both thoroughly enjoyed. Little pleasures in the company of one another are appreciated by both of us. We’re doing OK.

INCREASED SENSITIVITY OR AWARENESS
Increased sensitivity or awareness on my part is required as there is a moderate increase in my wife being confused at unsuspecting times. I say unsuspecting, which means that it is myself that was caught off guard. We went for a drive to Kentville, which is about a fifty-minute drive from where we live. One of my wife’s sisters used to live there a good number of years ago and it is a nice little town to visit. My wife anticipated that her sister still lived there and wanted to know why I had not called ahead to let them know we were coming. I explained that her sister and her husband had not lived there for a good number of years but my wife was convinced otherwise. Consequently, in the future, I will have to be more careful with possible confusion issues based on previous history, to avoid them if possible.

My wife uses two different kinds of inhalers to address her medical needs for COPD (Chronic Obstructive Pulmonary Disease). One she takes once a day, and the other twice a day. The once-a-day is a clicker type that numbers the applications that are still available to use. The second inhaler is one that does not indicate the number of applications that are still available; it just runs out when emptied. In the past, my wife has had no difficulty using these inhalers as prescribed but as of late, especially with the numbered application still available inhaler, she may take multiple breaths rather than just one, so I have to be very careful and watchful when she uses it. In addition, she seems to exhibit a certain amount of resentment if I indicate to her that she clicked it but did not inhale the medication and then clicked it again. Once you click it, the available applications are reduced, whether you actually use it or not. This morning, there were 5 applications left on the inhaler, which meant that after using it, there should have been four applications left. She clicked it without using it and then clicked it twice again, using it both times, instead of only using it once, as prescribed. Now there are only two applications left. I shall have to reorder sooner than anticipated.

I can understand the exhibited resentment because it indicates that she internalizes that she cannot focus as she used to be able to. The short story is she does not always like to be reminded of her deficiencies that she determines are not necessary to be voiced, and as she indicated to me, “taking an extra dose is not going to kill me”. This is presumably true, but noteworthy nevertheless to avoid in the future if at all possible. Hence the “increased sensitivity” or “additional awareness” on my part, notation.

OVERREACTING
One of the main lessons that have been continually reinforced, at least at this particular time, is NOT to overreact when one encounters what I call a blip in my wife’s normal memory deficiencies and false memory manifestations. The “blips”, when encountered, can be pretty devastating and have a tendency to turn me into a bit of a tailspin. They usually manifest themselves in the evening just before my wife goes to bed, which is usually about 8:00 PM, or during the first couple of hours after my wife has gone to bed. 

My wife usually goes to bed earlier than I do, about 8:00 PM, whereas I usually go to bed about 10 PM. Those couple of hours that I have to myself are important to me as they provide me with time to digest what has transpired during the day and put things into proper perspective. My evening prayers are also in this time slot. Another aspect of these “blips” is that you do not see them coming. They have a tendency to just suddenly appear.

One evening Peg informed me that her father was the father of our twins. She was very firm about it and gave the impression that to say otherwise was ludicrous. I asked her if she understood the implications of the statement but she did not respond. Peg had never stated anything like this before. For obvious reasons, this statement was quite concerning to me. She also insisted that I go home to my own place and that she lived in this apartment with someone else, but she could not identify who that someone else was. Up until this point in time, there has never been another incident in which she was confused about who our children are or who their parents are, so this “blip” was quite unexpected.

In the past, when these blips appeared out of nowhere, I would follow up with her the next day, but I felt a strong urge not to do so this time. It’s almost like discussing the incident reinforces a negative aspect, which in itself can be counterproductive, so I let it go. The following morning and day, there were no repeats of these false memories, and her recollection was normal. 

I think “blips” is a good name for these instances because they can appear out of nowhere and disappear or be forgotten the following day. The key consideration to be mindful of is NOT to overreact and wait for the return of normalcy, which at this point in time has always been the following day. The blips also appear to happen in small clusters, that is, they are accompanied by other “blips”. There has been a slight increase in the appearance of these blips, but overall, my wife’s recollection of immediate family members remains consistently intact. 

Focusing on the positives of our relationship and not overreacting to the infrequent memory issues has a tendency to keep my wife’s balance of well-being relatively sound. We both know they are there, but it serves no useful purpose to dwell on them too much. When they do appear, they can be quite concerning, especially to me, but at this point in time, normal memories return the next day. Something to be mindful of.

Following the guidance of God’s Holy Spirit and trusting in Him continues to manifest His continuing grace. I continue to marvel at His faithfulness.

CONFABULATIONS INCREASING
It’s been a little over a month since my last entry. For the most part, all things considered, things have been going relatively well. Short-term memory issues are usually easy to accommodate; I merely repeat the information that Peggy is asking about. The false memories or confabulations are more difficult because they not only affect Peggy’s perception of what is or has happened, but sometimes it also affect others. 

Yesterday, we had our almost six-year-old granddaughter over to our home for about four hours. We all had a delightful time. But while driving our granddaughter home, my wife happened to mention that the actual mother of our granddaughter was not her mother, and of course, this took our granddaughter by surprise. I informed Peggy that our daughter was the actual mother of our granddaughter in the car, but Peggy insisted she wasn’t. Due to the presence of our granddaughter, I did not press this false memory any further at that time. Later, while we were driving home from dropping off our granddaughter to her mother, my wife mentioned to me that the husband of one of her sisters might get some reprieve now that the funeral for his wife (Peg’s sister) was over. The problem was that her sister had not died, and consequently, there was no funeral. I informed my wife of the false memory, but she did not ask any further questions, so I let it drop.

After we had eaten our dinner, my wife indicated to me that she was really tired and wanted to go to bed early. Normally, she goes to bed about 8:00 PM, and I usually follow about 10:00 PM. This particular time, she went to bed at about 6:30 PM. At 8:30 PM, she got up, got dressed in day clothes and came out of our bedroom inquiring why I had not gone to bed. Because it was still light out, I pointed to the window and told her that it was still early and that I normally went to bed about 10:00 PM when it was dark. She kept insisting that it was yesterday and today was today, and I was confused about what she was indicating. It finally dawned on me that she thought she had gone to bed, slept through the entire night and then gotten up the next day, when in fact it was still only about two and a half hours since she had gone to bed. These three false memories all took place within about five hours, and the bundle of them concerned me because there usually is a considerable amount of time between them, that time being days.

Having never experienced her confusion about the time of day or days like this particular episode before, my own confusion was perplexing and emotional until I figured out what had happened. As always, the key thing to remember is not to overreact. I did go over the series of false memories that had occurred with her, and she was a bit defensive, which is understandable.

I find the emotional implications of these episodes the most difficult aspect to handle, especially when I am confused about how her perception of what has transpired doesn’t make immediate sense. 

NEXT DAY FOLLOW-UP
God’s grace and answers to prayer are amazing. The next day was relatively quiet to begin with. The Holy Spirit encouraged me to say nothing about what had happened, and that is what I did. We went for a drive to a nearby sea coast small town, and Peg brought up what had transpired the previous day. She remembered everything, and we spoke of the false memories that can come up from time to time. I reminded her of the trust that she can place in me as a reference point to determine what is a valid memory and what isn’t. It was a good two-way conversation, and both of us were encouraged at multiple levels. The stormy waters were calmed. Praise God!

24 July 2024
It’s been a couple of hard weeks since my last entry, and I would be less than honest with you if I denied that there has been some faltering on my part. The reminders of the effects of dementia have been increasing, and they can have the tendency to test our trust in our own strengths. It’s been difficult; there is no getting around it. Still treading water, but tiring might be a good description. It wears on you deeply. One of the hardest things to deal with is the eroding of things that you never imagined could be eroded, and they keep popping up when you least suspect them to appear. Sometimes it feels like the breath has been removed from your lungs; it hits you that deep. It’s like you cry inside.

Giving in to them is never the answer, but it definitely causes one to reflect on our own insufficiencies. Prayer is becoming more earnest, for God’s peace in the presence of heightening waves. I know God’s love surpasses our understanding, and it is beautiful beyond words. It’s that constant awareness of His love and wisdom that I seek. And His forgiveness for my shortcomings. I don’t want to become part of the difficulties, and there are times when I am.
Lord Jesus, open my eyes that I might see as you do.

The increase of confusion and false memories has definitely increased to almost daily now, but in like manner, so has the resolve not to over-react, and a thankfulness is also present that a realignment to reality is still present. There is still so much to be thankful for. We are not alone in this, God is with us daily. The fabric of His grace is ever-present.

If someone were to ask me what the greatest lesson that I am learning thus far is, my answer would have to be the reality of God’s faithfulness and the depth of my own dependency on Him. God’s patience, forgiveness, mercy and enduring grace are literally new every morning. There is a substance to God’s faithfulness that is difficult to put into words. Plus a growing awareness of the difference between His wisdom and mine, and my utter dependency in Him. In reality, how could it be any other way? The wonder and joy of it all is that He is here with us, and His ways and thoughts are so much better than mine or ours. He is indeed our shepherd, and we are indeed His sheep. Worthy is the Lamb indeed!

The substance of God’s grace and His sufficiency weaves the strings of gratitude into one’s heart. 

Update: It’s been a month or so (it’s now mid-September 2024) since my last entry. God’s grace is daily present. The fabric and value of faith is deepening with regard to God’s guidance and His abilities that far surpass mine. I think one of the most beautiful aspects I am learning to appreciate is how God touches my heart with regard to the love that I have for my wife. It smooths the edges of what we both are called to deal with, and there is a peace that is hard to define. I pray daily for God’s grace in our communion with Him and the multi-faceted benefits that this brings to our marriage with Him and with one another. When one considers the sadness that this walk brings to the surface, it is amazing that there is still so much love and joy. We would be undone without His care.

Yet another update: It’s mid-October 2024 now, and most things are relatively stable. No major glitches to speak of, some minor ones have raised their heads, primarily with regard to confabulations (false memories). Peggy was convinced that I had gone out after she had gone to sleep the other night, when I had not. Last night, after Peggy had gone to bed before I go to bed, she came out of our bedroom wanting to know when the two girls who were staying over for the night would arrive. She insisted that she had spoken with their mother on the phone the previous day. A pretty consistent one is if we are having one of our sons or daughters over for dinner. Peggy usually thinks the whole clan is coming over and wants to know why there aren’t more settings on our dining room table. I explain the reality situation in each case, and most times the false memories are acknowledged as such by Peg, and we return to what is rather than what she had thought. It’s interesting that these confabulations raise their heads in batches of two or three and then fade away for a period of time. The main thing to remember on my part is not to overreact and calmly explain the misconception. 

Our communication with one another is still very good. This particular summer and fall have been a time of enjoyment with regard to the beautiful weather, and now that it is fall, the changing colors of the leaves on the abundance of trees that we can easily view from our living room window. I can’t help but sense that we have been given these two seasons to enjoy, especially in the company of one another, and there is a sense of deep gratitude for this gift that we have been given. Sometimes I marvel at God’s benevolence.

Peggy has COPD (Chronic Obstructive Pulmonary Disease) and it flares up with a persistent cough from time to time, which is concerning and the disks in her back that were injured in a car accident when she was younger cause her more discomfort now, but we’re still both mobile and we still try to get outside every day. Peggy definitely tires more easily now (as do I), but our diminishing energy is compensated by no deadlines to meet or schedules to keep. We had to distance ourselves from one of our daughters and her young daughter (long, long story), which has been very difficult but necessary, and that adds an element of sadness that is with us daily, but the alternative is clearly beyond our capabilities anymore. So we try to focus on the positives and are thankful for the many gifts that God has given us. The persistent overview that we are aware of is the gift of time together and the comfort and beauty of sharing our love for one another. One cannot help but be thankful for God’s enduring grace.

And Another Update: 19 Nov 2024
Nothing major to report. Everything continues to be steady as she goes, no major blips or concerns. Peg seems to get tired more easily as of late and eats smaller portions of her meals, but she eats well and getting a good night’s sleep usually means the day will run smoothly. Being fully retired is a real blessing. We enjoy one another’s company, and it’s so nice not to have to watch the clock or worry about being absent from one another. God is good!

Peg and I received our COVID-19 booster shot and our annual flu shot recently, and it definitely had an effect on her. No fever or physical reactions other than a sore arm for both of us, but it slowed Peg down considerably, and she had a couple of days where she had considerable difficulty finishing sentences and slept a lot. Finally, late yesterday afternoon, things appeared to do a bit of a turnaround, and her communication is relatively normal again, and she has returned to her normal sleeping patterns. It was difficult to go through on a number of levels. To witness her struggling like that is hard to bear. General confusion increased, and false memories were more frequent. Looking forward to a relatively peaceful day today, God granting us His grace.

December 2024
The last week or so and the last day or so have been the most difficult to encounter. The frequency of instances has substantially increased with additional aspects that I have not had to adjust to before. Previously, it has been like a tap turned on to mid-range with the occasional surge that falls back to the mid-range in a day or two, but as of late, the tap has been turned open considerably more, and the “instances” have increased substantially. I’ve had to lay it out before the Lord because it is affecting the way I think and the way I react. God’s grace has more than met that which we’ve both previously encountered since Peg’s dementia became noticeable, but as of this last week, my limits have been sorely tried, but not broken.

Peg’s eating habits have modified somewhat as of late, so that it is increasingly difficult to ensure that she obtains sufficient and wholesome sustenance. Peg is eating less, but there is no noticeable loss of weight. It’s just an added level of awareness and accommodation that has increased. There is also an added awareness of Peg’s personal hygiene habits that has surfaced, which is concerning. Peg and I have discussed it, and I have taken this to the Lord. It is an added weight. And the volume of short-term memory loss and false memories has increased substantially, which I have illustrated with the tap being more open analogy.

Instances of misplaced items have also increased, and I find that I am almost continually looking for items she wants that she cannot remember where she put or saw them last. She misplaced her wedding and engagement rings again, and through God’s grace, they were found once again after a few days. Additional awareness and precautions must be exercised so that they are not lost again. It’s not their value as items but rather their value of what they represent. I don’t want her to lose that too.

I’m used to the short-term memory loss issues and their accommodation, but the false memory loss instances are part of the volume of instances that is much more difficult to deal with, not just with myself, but also when others are present. These false memories touch on just about every aspect of our previous life. Her working, driving the car, which she no longer does (two years) for obvious reasons, where we live, where I live, who she has recently seen and not seen, who is coming over for dinner, family members who have died, etc.

I’ve managed her medications for over two years now, but as of late, they have also become increasingly difficult to explain and administer. Peg uses two inhalers to address her Chronic Obstructive Pulmonary Disease (COPD). Peg misplaced one, which we could not find for just over a week, and I do have to visually sight her taking them because she will frequently tell me she has taken them when she hasn’t. The visual verification is now a constant necessity, and I can’t leave her alone when taking her meds for a minute because she sometimes puts them in her pocket and says she has taken them.

The need for continual awareness, accommodation and controlled and compassionate reaction can literally drain me, especially near the end of the day. In a number of ways, it is like dealing with a mentally challenged child, and yet that child is visually displayed as the adult spouse you’ve loved and cherished for over five decades. The reality of what both of us are progressively losing can quickly drop one to one’s knees. Put this all together, and it presents a partial picture of what both of us are being exposed to. It doesn’t get much realer than this.

Prayer and communion with God are a beautiful thing. Trust, faith, love and hope are reborn daily. I can’t stress that enough. Our need for God’s grace has never been greater, and God graciously keeps taking us to the next level of our dependency. I am so thankful and appreciative of His provision. Considering what we originally gave God to work with, it is amazing where He has brought us. 

You may wonder if I have asked God to heal Peggy. The answer is yes, almost daily, but there is the matter of God’s will for us, over our own will. We may not understand, but we have learned to trust. Romans 8:28 comes to mind: “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” God’s purpose and His will take precedence over our purpose and our will. We shall trust in Him. If He can bring us this far, He is well able to get us home.

A New and Different Wall
Normally, when a blip is encountered, within a day or two, things slowly return to normal. Normal does not mean normal as it was before Peg started showing dementia symptoms. Normal now means even though there are short-term memory issues and false memories, etc, we still can identify, talk and work through them. The thing is, we’re into the second week now, and things are NOT returning to normal. There is no working through them, now for Peg, it is what it is, and there is no real evidence on her part of trying any more. Very little of what I make for her to eat is to her liking. She knows what she doesn’t want to eat, but she does not know what she does want to eat, so her solution is not to eat. I also find it very difficult to get any regular sleep now as she is continually poking her finger into my eye or sticking her finger into my ear or literally knocking on my leg with her clinched hand as one would knock on a door. 

That new hope that has been and is available every morning, that has consistently been there for the last four years, isn’t there now and that confidence that I had, that between the Lord and us working together to manage these changes and maintain a meaningful quality of life and our enjoyment of each other is rapidly disappearing. If this is Peg progressing into the medium level of dementia, it is an entirely different experience, and I, in addition to Peg, am not doing well. Of course, I have prayed about it, every morning and frequently throughout the day, as I hit one wall after another. I have asked God for the strength that I do not possess to take this on and I actually know how powerless I am, of and within myself, but it continues. Letting her NOT eat is not the answer. She doesn’t want someone else coming into our home and assisting us or her. She just wants me to let things be, and there is no good solution that will address or please both of us. 

The thing is, absolutely none of what is transpiring is the fault of Peggy. Neither one of us has any control over the progression of dementia in any way. I think I was hoping that the progression of dementia would be slow and able to be accommodated by the two of us, with the Lord sustaining us, until He called one of us home. Wishful thinking? Maybe so, but it is a hope that I have held onto. Evidently, from what I can now see, that hope that I have held onto doesn’t look very promising.

Is this the time when I start to consider placing Peggy into long-term 24/7 care? Just the thought of doing that is devastating in itself. Waiting lists for placement are long, and locations are not always ideal. Financial considerations and accommodation would also be necessary, but doable. In my heart, I don’t even want to discuss the possibility of entertaining doing this now with her because it makes me feel like I am abandoning her, and the Lord knows that would tear me and her apart. Lord, if I ever needed your guidance and help, it is now.  – 5 Dec 2024

6 Dec 2024 – Last night, God gave both of us a good night’s sleep. First time in over a week. Oh how I needed that on so many levels. I praise God’s Holy name!

7 Dec 2024
I’ve been doing a lot of thinking and praying as of late with regard to the progression of dementia that has been manifested in my wife as of late, and the ramifications of these changes in both myself and my wife. The following post addresses the conclusion of my reflections: https://bcooper.ca/2024/12/07/changing-my-mindset/

31 Dec 2024
Well, here it is the end of 2024, and it has been a significant year. Over all we’re still managing well but there is no doubt that the management has become increasingly difficult at times and more time-consuming. Obviously, because Peggy has little, if any, means to control the progression of this disease, the onus has been on me to adapt as required. Most times, I have been able to adapt but the times when I have experienced difficulty have increased marginally. We still communicate with one another quite well, although there are times when even communication takes a more strenuous effort to maintain. Peg switches topics without warning more frequently, and it takes real concentration to follow what she is focusing on. There is also an increasing need for me to be close to her at all times, even to the point that I need to tell her I am going to the bathroom. She asks me where I am going almost constantly, and the instances where she forgets what I just did or said just moments ago are definitely more frequent. Her perception of time has also been affected. If I take the garbage to the garbage bin, the five minutes this takes seems to her to be over an hour. She also has frequent false memories where she thinks I have told her I would be five minutes when, in fact, I have not indicated any time duration. To avoid this confusion for her I have developed the habit of letting her know exactly what I am doing during most of the day (cleaning and putting away the clean dishes, cooking, getting groceries, cleaning, laundry, and other day to day necessities) and this accountability aspect in itself can at times become tiring mentally. I’ve thought to myself that it is almost like she has a stop watch timing me on everything that I do. Focusing on why she does this brings understanding.

Peg’s independent viewing of TV for some TV series that she enjoys watching has also become more difficult as she wants me with her, even though we have already gone through the same series multiple times. When I remember the next line that they are going to say, even watching TV with her sometimes becomes more difficult. Peg will insist that she hasn’t seen the series, and in her mind, this is true. Unfortunately for me, it isn’t. I won’t tell you how often I have watched the same series over and over again. Most times, I can handle that, but infrequently, it makes me feel like I am a prisoner in my own home. I try to pick movies that I think she will enjoy and that neither of us has seen before, and we still enjoy these new movies together. Both the TV controller and her iPhone have become sources of almost constant confusion for her and I find that I must relocate the movie we have been watching after I leave her alone in our TV den to make her a cup of tea or prepare and serve her lunch, and then clear her iPhone once again because she has 21 different apps running at the same time or has changed a setting on her cellphone that radically alters what is displayed. This happens so frequently now that most times she will just pass the applicable device to me and says “Fix it”, which I do, but she keeps on doing it any time I leave her alone if only for a couple of minutes. Needless to say, I have become quite a whiz at quick fixes and the vast majority of time it doesn’t bother me or her. 

What I do remind myself and Peg is that we do still share good times, times of laughter and good togetherness that is precious. We are both still independent of the need for the assistance of others and we can still decide what to do, when to do it, and there are no external timelines that we must align ourselves with. There is comfort within our routines, and aside from the infrequent major blip now and then, this quality togetherness is still being maintained. This last year has been more difficult than the first three combined. Re-educating my own brain and adapting to changing demands has made me more aware of the need for compassion and understanding on my part and giving more whenever I can. I also remind myself, if our roles were reversed, I know she would do the same for me. Peg’s changing needs are understandable, as are my sometimes slowness of awareness to adapt. I’d give myself a “B” or perhaps a questionable “B+” for overall adaptation, all things considered. I can certainly tell you that what we have experienced individually and collectively definitely divides the “me” aspect from the “us” that we are. God’s enduring grace is the sole reason that the two of us are where we are today, because had I focused on myself, the results would not be where they are today. I still marvel at God’s patience and forgiveness, in particular with me.

I have no idea what awaits us in 2025. I don’t think that far ahead in our fifth year of progressive dementia. Day by day is the focus, adapting as required. My hope, as always, is that we have more time together, with God as our guide.

NEW YEAR 2025
The New Year didn’t start out too well. On the 1st of January 2025, Peg had another what I would call major blip that lasted for approximately 12 hours, and it was particularly difficult to deal with. What follows is a condensed overview of what transpired.

The day started out normal, when Peg got up, I made her breakfast and ensured that she took her normal medications. I normally get up earlier than Peg does, so when she got up, we hugged and kissed like we normally do. Peg ate her breakfast and took her medications as usual.

Peggy usually has a short nap after breakfast, and after she got up, we went out to get a prescription refill that was ready for her at Costco, and I bought her some flowers there. She also had an ice cream cone from Dairy Queen. We then drove home, and I made her lunch (around 2:00 PM), and she ate it all. Peg had another short nap, and then we watched some TV. Peggy didn’t want to eat supper as she was not hungry, and that was OK. She said she was tired and wanted to go to bed early, which she did at about 7:00 PM. I ensured she had her night meds and told her I might watch a movie on my computer (headphones on) and then I would come to bed. As I normally do, after each day, I ask her if she has had a good day, and Peg said that it had been a good day. In short, this was just a normal day, like the vast majority of our other days together are.

At about 8:00 PM, Peg called me from the bedroom door and wanted to know if I was coming to bed. I explained I was still watching a movie but would be coming to bed shortly. Peggy went back to bed.

A little after 9:00 PM, Peggy came out of the bedroom and she was fully dressed, she had gathered some clothes items and told me that she was going home. She had made the bed. Initially, she told me that “Bruce” was picking her up and that she had to leave here. We’ve gone through some what I call “blips” before where she was confused about the time or that she had to go to work at Northwood, her previous place of employment, etc, but I have always been able to explain the situation to her and get her to go back to bed. Not so this time.

Peg then wanted to leave the apartment and get a taxi so that she could go home. I tried explaining to her the reality of our situation (this is her home, etc.), but she was adamant. I asked her to go back to bed, and we could look at this again in the morning. She would not go back to bed. For the next four hours ( until 1:00 AM), we sat in the living room with me trying to explain the false memories she was experiencing, but to no avail. She told me that I had changed. That she had always felt safe with me before but not now. She also told me that there would be no more laughter between us, that I had changed, and she then told me that she was going to go to Jerry Lou’s (one of her sisters) to stay. I explained that situation to her (her sister, Jerry Lou also has dementia and is taken care of in a 24/7 health care facility). I also reviewed how I had cared for her for the last four years and why I did what I did, obviously because I love her, but there was a coldness in her that I have not seen before. When inconsistencies are identified, such as what time it is etc, she just makes up a response that addresses the issue in her mind, such as the time has changed. The responses never make sense. I reiterated that I was not angry or upset with her (none of this is anyone’s fault) but rather I was just at a loss of what to do.

Around 1:30 AM, I was able to convince her to go back to bed, but I would not be joining her as I wanted to sleep on the couch to ensure I would wake up if she decided to leave the apartment, and that is what I did. I hoped that after she had slept some, her normal recognition of us being together in our apartment would return as it had a couple of times before. Peggy came out of the bedroom around 7:00 AM, fully dressed again and placed some clothing items on our dining room table, asking for a plastic bag or small suitcase to put them in. I reviewed what had transpired during the evening, and she then told me that she was going to go and stay with Tracey (one of her daughters) and that they had already discussed it. I explained that I am with her 24/7 and that this also was a false memory, but she remained convinced otherwise.

Peggy had taken her morning meds but did not want her normal tea and breakfast as she stated she was not hungry. She then took a nap on the couch, and I cancelled the oil change I had scheduled for this day, as I did not want to leave her alone. The last thing I want to do is put her into an institution unless there is no other option. 2024 was more difficult than the first three years altogether, but we have adapted, and I hoped that additional adaptations would facilitate the extension of our adapting norm. Our “togetherness” has been working, and my hope is that it will continue. This night put some real doubts into that hope.

What I have learned over the last four years is not to overreact and these “blips” are abnormalities that do infrequently appear. They are not fun to go through and I understand that they will probably increase in time.

At approximately 0945 AM on the 2nd of Jan 2025, Peggy, as I know her, came back! She woke up on the couch and asked me why her clothes were on the dining room table and what was with the small suitcase. The tone of her voice was back to normal, soft and loving. She did not remember what happened, and she recognized that this is our home. She told me to put the clothes back where they belong. This particular “blip” was 12 hours long. I lightly reviewed what happened with her. The rest of this day was quiet. We kissed. God is good!

Today is the 17th of January 2025, and the last fifteen days have been mostly normal with no recurring “blips”. Both of us have been sleeping relatively well during the night. Peg’s short-term memory loss and confusion levels are in keeping with her condition, and the vast majority of them are not difficult to handle. However, this last episode took a lot out of both of us. I remain cautiously optimistic.  

30 January 2025 Entry
Another change that I have had to adjust to is that Peg is prone to changing her mind on her preferences as of late. We wanted to get a bigger rug for our living room, and we selected one from Amazon together. And when it was delivered, we both loved it. Then a day later, she decided that she didn’t like it so I returned it. Likewise, with a picture that Peg had bought me years ago that I reframed and hung in our living room. After I reframed it, she said she loved the contrasting colour of the frame, and then the next day she said she didn’t like the colour of the frame. Returning the rug and reframing the picture took a considerable amount of work so I have made a mental note to avoid making joint purchase decisions and changes in general so as to avoid unnecessary frustration on both of our parts in the future.  

25 February 2025 Entry
All things considered, except for a minor blip here and there, everything has been going relatively well. One morning recently, Peg decided that she was not going to take her morning medications, which include a blood thinner, because of a minor heart attack she experienced a few months ago, so that got my attention. My sense of helplessness was difficult to deal with, but eventually, a couple of hours later, she did take her meds. I’m pretty sure I could have handled that “blip” a little better. I cannot help but feel compassion for her; it must be so difficult to walk through the minefield of her mind at times. That’s where the hugs and reassurance of my love for her come into play. I’ve learned to lean into those when God, in His grace, brings them to my heart and mind.

Maintaining the balance of my own mind can be exceedingly tiresome at times. God’s grace is new every morning, and I start out well, but it adds up during a long day, and sometimes I long for a little peace in my own mind where I don’t have to continually explain, accommodate and adjust. I am so grateful for God’s guidance, strength and mercy. One evening recently, after I had changed the sheets on our bed in the morning and put on a new set, then the thin blanket we use on top of that and then finally the bedspread on top of that, when I went to bed in the evening, about an hour after Peg did, she had taken the thin blanket that covers us and the bedspread which we normally just roll back to the foot of our bed and neatly folded both of them in a corner so that all that would cover us was the top sheet. Not a big deal but it can surely try one’s patience at the end of a long day when I can’t seem to find the blanket that covers us to pull back and get into bed. Yes, I could have responded better on that one too. Think big picture, Bruce, and stop the muttering.

Sometimes I will give Peg the laundry from the dryer to fold, and then I put everything away, but normally I do it all now. Breakfast, making the bed, laundry (wash, dry and put away), lunch, supper, dishes, house cleaning, groceries, and I do all the driving now. I don’t mind doing it at all. For so many years, Peg took care of all of this and so much more. She was a far better cook than I will ever be, but I manage now. I make sure that she has fresh fruit, balanced meals and those special treats that she likes. Besides, I’d probably weigh twice as much as I do now if she were still cooking! Peggy used to make rolls and desserts to die for. Yes, I do miss those! I do make biscuits with raisins in them or bran muffins occasionally, and they are good (edible), but nothing compared to what Peg used to make.

Last night, two of our grown-up boys came over for supper. I made turkey, gravy, mashed potatoes, veg, small salad, etc. Peg loves seeing all of our children, as do I. It was a good time, and we are grateful. Stay tuned!

26 February 2026
Yep, a big lesson was just learned by me.
Yesterday, Peg decided that she was not going to take her morning meds again. This was just AFTER I wrote the preceding entry for the 25th of Feb. Unlike the previous episode of this happening a couple of days ago, this time she did not take them, nor would she take them at all.
Her pills were still sitting there at noon.
One of our sons came over and he was able to persuade Peg to take them, so she did get her meds, but they were taken in the early afternoon vice in the morning when she normally takes them.
My son told me not to take it personally. He was correct. I am going to add a copy of my email to him that I sent to him this morning so that you can follow the lesson that I learned. It is a big lesson. Here is the email:

More to follow.

Worthy is the Lamb! Blessings!

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