UTIs are common and cause their dementia to worsen. I agree completely that most hospitals in the US are not prepared to deal with patients with dementia. I spent 8 hours with my parents with dementia in the ER in June after my mother fell and dislocated her shoulder. After diagnosis, the nurses kept saying they wanted to keep her for observation. My father was wandering and getting lost, my mother was agitated to an almost violent level and as I assisted her to the bathroom, several times, she was punching me and trying to “escape.”😳 I turned to the nurses station and insisted on being discharged in ten minutes or “She will run around naked with her hair on fire,he will wander into a surgical unit, and I will have to be checked into a psych ward”. They made the discharge happen. I cannot imagine what would happened if she was left alone. I hope we never have to find out.
Breathe. Rest. Nurture yourself. It’s a very tough road. Keep writing. We are here for each other. A community of caregivers.💜
I appreciate these words of support. I've had a lot of experience with doctors wanting to keep Mike for "observation" because they didn't believe me (or didn't listen) when I explained his cognitive baseline. Now that he clearly has dementia, I expected that to change--but it hasn't. Doctors see age 62 in his chart and start making assumptions about what must be true even before they see him.
Go with your gut. It sounds simplistic, but educating yourself about dementia (I know, with all your free time🙄) can help. Dementia For Dummies breaks down the stages. My parents are 90. It’s very different. Hang in there!💜
Hospital environments are so so difficult for those with dementia- each visit, my father worsened considerably upon returning home. I'm so sorry that you both had to experience this.
Something I just experienced and I'll offer it in case it's new to someone else and useful. I was in the ER recently in the middle of the night because of a kidney stone. I was given an IV antibiotic and sent home with a rx for antibiotics too- both third generation cephalosporins. Now I'm 53 with no dementia, but the effect of these drugs on me where like I had dementia- confusion, loss of time and reality awareness, extreme lethargy. I had a headache I couldn't shake. I had physical symptoms too - red flaming cheeks, raw mouth, and eventually tiny blisters on my hands.
I read up on antibiotic toxicity (I did have minor renal impairment bc of my stone issues, but nothing that should've triggered these extreme effects) and it is an issue for many elderly in hospital who are given third and fourth gen antibiotics of any kind via IV especially.
So if your loved one is getting IV antibiotics and their dementia symptoms worsen or appear if they don't have a dx of dementia, please inquire about the antibiotic they are taking and question whether it is negatively affecting them.
[This isn't to imply the patient quit taking any antibiotics, but perhaps try a different generation or even class of antibiotic].
This is really good information—thank you for sharing it. I always worry about adding medications of any kind to Mike’s regimen, because Parkinson’s sometime impacts the way those meds work on the body. (Tramadol, for instance, is a really commonly prescribed pain reliever—but it’s on the No list for people with Parkinson’s.) That made hospitalization all the more frightening because I wasn’t confident anyone was looking at Mike in particular, rather than Mike as a patient in general.
I am so sorry you had to go through this. As an MD (practising in Canada) I can tell you hospitals are hard for patients and their families. The best thing you could’ve done was stay with him and I’m so glad that you did. And I’m so glad for your comments and your thoughts which can only help to make those who provide care better at what we do. I am so sorry that the indignity that you suffered of being referred to as the wife, I wish those who worked with you had learned your name and had represented you as a person because when one person in a couple is sick, the whole family is working through that and giving you the dignity of a name and being seen as a person would’ve been so helpful to you during this difficult experience.
Take a notebook and write everything down, or practice with one of those new note taking apps that will record everything and transcribe it for you. That way you can ask the name of everyone who speaks with you, and periodically say things like, ‘Now at 2035 (or whenever, but military time is good for reducing to confusion) the young/old/asshole doctor says he will do Xxxx, and the experienced/exhausted/vicious nurse rolled her eyes, ask this nurse what concerned her…you need to practice so you know the notetaker is on when you want it to be, but it keeps a better record than you can if you know how to work it. Good for continuity of care, and also documentation if there should be a problem of some sort…sorry this happened to you and your husband. A cautionary tale for all of us.!
A few years ago my mother went to the ER with her dementia diagnosis straight from her Assisted Living Home. She was later discharged. The doctor never spoke to any family member. The discharge notes said she fully understood the after care instructions, and the first thing she said after we picked her up was “why was I at the hospital?” No recollection that she even saw a doctor, much less what he said to her.
Hospitals are so focused on getting people evaluated and treated within the times allowed by insurance companies that they can’t even see the patients as individuals.
I'm bookmarking this,advice. Two years ago, I started handling my brother's liver failure issues. I would have benefited from your suggestions. I feel confident I will have other family members who need similar assistance in the future.
All this said I can say for me, just for me, let me die from the UTI. Everyone's millage will differ, but for me, I wouldn't want to go though what your beloved experienced in this er visit, hospital visit, and probably his daily life. I would not want my beloveds to worry, pay, and be afraid for me. I'd want them to begin to move on with their lives not go though what you did. Truely everyone is different and I respect you are giving him what you both consider best.
Same here. There is an old saying that pneumonia is a friend to the elderly. So are UTIs? I have given up on healthcare and our government. I don't want to suffer in a care home or nursing home.
So, with all that happened, tell me how you sat in a room alone and “let go” of everything you were carrying. This situation needed to be dealt with and you’re the only one who could do it. What if you had said, “I’m sorry I can’t come now. I have to decompress”. Give me a fucking break. There are only two ways this situation doesn’t happen again. One of them is to have a cure. The other…?
UTIs are common and cause their dementia to worsen. I agree completely that most hospitals in the US are not prepared to deal with patients with dementia. I spent 8 hours with my parents with dementia in the ER in June after my mother fell and dislocated her shoulder. After diagnosis, the nurses kept saying they wanted to keep her for observation. My father was wandering and getting lost, my mother was agitated to an almost violent level and as I assisted her to the bathroom, several times, she was punching me and trying to “escape.”😳 I turned to the nurses station and insisted on being discharged in ten minutes or “She will run around naked with her hair on fire,he will wander into a surgical unit, and I will have to be checked into a psych ward”. They made the discharge happen. I cannot imagine what would happened if she was left alone. I hope we never have to find out.
Breathe. Rest. Nurture yourself. It’s a very tough road. Keep writing. We are here for each other. A community of caregivers.💜
I appreciate these words of support. I've had a lot of experience with doctors wanting to keep Mike for "observation" because they didn't believe me (or didn't listen) when I explained his cognitive baseline. Now that he clearly has dementia, I expected that to change--but it hasn't. Doctors see age 62 in his chart and start making assumptions about what must be true even before they see him.
Go with your gut. It sounds simplistic, but educating yourself about dementia (I know, with all your free time🙄) can help. Dementia For Dummies breaks down the stages. My parents are 90. It’s very different. Hang in there!💜
Hospital environments are so so difficult for those with dementia- each visit, my father worsened considerably upon returning home. I'm so sorry that you both had to experience this.
Something I just experienced and I'll offer it in case it's new to someone else and useful. I was in the ER recently in the middle of the night because of a kidney stone. I was given an IV antibiotic and sent home with a rx for antibiotics too- both third generation cephalosporins. Now I'm 53 with no dementia, but the effect of these drugs on me where like I had dementia- confusion, loss of time and reality awareness, extreme lethargy. I had a headache I couldn't shake. I had physical symptoms too - red flaming cheeks, raw mouth, and eventually tiny blisters on my hands.
I read up on antibiotic toxicity (I did have minor renal impairment bc of my stone issues, but nothing that should've triggered these extreme effects) and it is an issue for many elderly in hospital who are given third and fourth gen antibiotics of any kind via IV especially.
So if your loved one is getting IV antibiotics and their dementia symptoms worsen or appear if they don't have a dx of dementia, please inquire about the antibiotic they are taking and question whether it is negatively affecting them.
[This isn't to imply the patient quit taking any antibiotics, but perhaps try a different generation or even class of antibiotic].
This is really good information—thank you for sharing it. I always worry about adding medications of any kind to Mike’s regimen, because Parkinson’s sometime impacts the way those meds work on the body. (Tramadol, for instance, is a really commonly prescribed pain reliever—but it’s on the No list for people with Parkinson’s.) That made hospitalization all the more frightening because I wasn’t confident anyone was looking at Mike in particular, rather than Mike as a patient in general.
I am so sorry you had to go through this. As an MD (practising in Canada) I can tell you hospitals are hard for patients and their families. The best thing you could’ve done was stay with him and I’m so glad that you did. And I’m so glad for your comments and your thoughts which can only help to make those who provide care better at what we do. I am so sorry that the indignity that you suffered of being referred to as the wife, I wish those who worked with you had learned your name and had represented you as a person because when one person in a couple is sick, the whole family is working through that and giving you the dignity of a name and being seen as a person would’ve been so helpful to you during this difficult experience.
God bless you and keep you close to Him.
Take a notebook and write everything down, or practice with one of those new note taking apps that will record everything and transcribe it for you. That way you can ask the name of everyone who speaks with you, and periodically say things like, ‘Now at 2035 (or whenever, but military time is good for reducing to confusion) the young/old/asshole doctor says he will do Xxxx, and the experienced/exhausted/vicious nurse rolled her eyes, ask this nurse what concerned her…you need to practice so you know the notetaker is on when you want it to be, but it keeps a better record than you can if you know how to work it. Good for continuity of care, and also documentation if there should be a problem of some sort…sorry this happened to you and your husband. A cautionary tale for all of us.!
There are lessons in here for all of us, Pam. Thank you.
A few years ago my mother went to the ER with her dementia diagnosis straight from her Assisted Living Home. She was later discharged. The doctor never spoke to any family member. The discharge notes said she fully understood the after care instructions, and the first thing she said after we picked her up was “why was I at the hospital?” No recollection that she even saw a doctor, much less what he said to her.
Hospitals are so focused on getting people evaluated and treated within the times allowed by insurance companies that they can’t even see the patients as individuals.
I'm bookmarking this,advice. Two years ago, I started handling my brother's liver failure issues. I would have benefited from your suggestions. I feel confident I will have other family members who need similar assistance in the future.
Observation is when they charge you and not medicare. No way observation was correct given severity of symptoms.
Read this. https://vancefrost.substack.com/p/your-medicare-labeled-it-observation?utm_source=share&utm_medium=android&r=1zd7r0
All this said I can say for me, just for me, let me die from the UTI. Everyone's millage will differ, but for me, I wouldn't want to go though what your beloved experienced in this er visit, hospital visit, and probably his daily life. I would not want my beloveds to worry, pay, and be afraid for me. I'd want them to begin to move on with their lives not go though what you did. Truely everyone is different and I respect you are giving him what you both consider best.
Same here. There is an old saying that pneumonia is a friend to the elderly. So are UTIs? I have given up on healthcare and our government. I don't want to suffer in a care home or nursing home.
BTW - I hated it when I was called “the wife”. Like the dog or the basketball or the freeway.
So, with all that happened, tell me how you sat in a room alone and “let go” of everything you were carrying. This situation needed to be dealt with and you’re the only one who could do it. What if you had said, “I’m sorry I can’t come now. I have to decompress”. Give me a fucking break. There are only two ways this situation doesn’t happen again. One of them is to have a cure. The other…?
How’s he doing now?
Physically, he's close to where he was before the hospitalization. But his cognition hasn't returned to his previous baseline, which was expected.