Caregiver of 87 yo post stroke father with dementia

Binky!

New member
Dec 19, 2019
2
0
Hi everyone! New to this forum and I know you are all trying to navigate a difficult path but thought I’d just post to see if anyone else has a similar situation. My sweet dad had a major stroke exactly 3 months after my mom died (married 60 years) 5/2015 and he moved in with me after he got out of rehab. It was a left-sided stroke so unfortunately he is unable to use any of his right side, and speech was severely affected. Communication is very difficult...we tried communication devices but he really can’t use them and isn’t interested. He is incontinent and the only thing he can really do independently is feed himself (needs monitoring as he is an aspiration risk). Fortunately he attends an adult day care facility M-F and is picked up and dropped off daily at the house. He HATES it but he needs the routine and I need a break, and they are really good to him. I also have a busy 15 yo boy who plays ALOT of basketball. I retired in June as I could no longer juggle this circus and work. We have private pay aides who come in frequently so I can tend to other stuff. So here’s the thing.....he has a little dog PJ and they are glued at the hip. When he is here all he wants to do is sit in his recliner with his little dog on his lap. If the dog will not sit on his lap he’s constantly trying to get out of his chair to get the dog or the other two dogs as he wants all of them on his lap (broke his shoulder last year getting out of bed to let the dog out). He eats a breakfast before he leaves and has snacks and a hot lunch at the facility but once he gets home I cannot get him to eat anything other than a snack which he insists on sharing with the dogs. His physical health is good despite his status, and he has had no weight loss. We do nutrition shakes and push fluids. He sometimes becomes combative with the aids as he has started refusing toileting and getting a shower and is sometimes really rude to them....they are not offended but i sometimes have to help calm him down to cooperate. Since he can’t communicate he really has no control over anything in his life and we try to give him choices when the situation is appropriate. He seems to be sleeping more and wants to go to bed earlier, although with the time change it’s dark at 5:30 PM. He has never seemed to be upset about the stroke, losing his home and independence, or losing mom, but we don’t talk about those things other than reminisce and look at photo albums which he seems to enjoy. He has lots of family and friends who visit him and he enjoys visiting with all these people, and remembers them. I have no idea how to gauge his “stage” of dementia as it’s so difficult to determine his level of understanding due to the speech. Does anyone have an idea how I would determine this? I‘m assuming he’s progressing as he is sleeping more (he IS nearly 88 though), is eating less and more focused on the dogs....he has always (since stroke) focused on holding, petting and giving the dogs his food, but it does appear to be worse. Thanks for any feedback, sorry the post is so lengthy.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Welcome to the forum @Binky!
So much for you and for your dad to deal with. I don't know enough about stages, is it Alzheimer's or if it followed a stroke, is it vascular dementia your dad has? My partner has vascular dementia diagnosed after a stroke nearly 9 years ago and she sleeps a lot.
You will get feedback and advice from a great many people who have a better understanding though.
 

Binky!

New member
Dec 19, 2019
2
0
Welcome to the forum @Binky!
So much for you and for your dad to deal with. I don't know enough about stages, is it Alzheimer's or if it followed a stroke, is it vascular dementia your dad has? My partner has vascular dementia diagnosed after a stroke nearly 9 years ago and she sleeps a lot.
You will get feedback and advice from a great many people who have a better understanding though.


Thanks for your response. MDs all say dementia but not vascular dementia. You’re the only reply and i appreciate it, but was hoping for more feedback from others.
 

TextintheCity

Registered User
Feb 20, 2011
60
0
London
Don't be too disappointed in the lack of feedback it may be difficult for anyone to say with any certainty what stage your father is at as each situation is unique. You say he is healthy otherwise and not losing weight which is a good thing. My father suffered from dementia after a stroke, and unfortunately had to give up his dog after a while, although he was able to tell me that sadly, he couldn't look after her any longer. It seems that your father gets a lot comfort from stroking the dog and sometimes dogs are used as 'therapy' or 'service' dogs to help people with all sorts of difficulties, perhaps keep managing that situation as long as you can. It seems that you are doing as much as you can to support him and he does not appear unhappy. After my father's stroke he became very frustrated and sometimes angry that he could not express himself as fluently as before the stroke, especially when he was tired. He used to go to bed early especially in winter (6 or 7pm) but then wondered why he woke up in the middle of the night! He then used to go back to bed and sleep in till 9pm. Unfortunately he lived in Devon some 250 miles away, and although I was there several times a month it was never enough - I was still working and exhausted most of the time.
I don't have any answers really, but empathise with the worry of it all, I would just say continue what he is happy with, such as snacks, feeding the dog etc. as long as you think it's feasible to do so.
Incidentally, my mother has Alzheimers and the extra care sheltered housing where she lives provided a small battery operated dog that lays in a basket and you can see the rise and fall of it's ribs as if it's breathing! I had to laugh as mum looked at me and said "What the ..xxx..is that!" (I've hardly ever heard her curse!) then we both fell about laughing. Thankfully there are some crazy light moments in the mayhem and chaos of the devastation of dementia.
The stroke association website also has information about local groups/support line.
Look after yourself,
Sue
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
Hi everyone! New to this forum and I know you are all trying to navigate a difficult path but thought I’d just post to see if anyone else has a similar situation. My sweet dad had a major stroke exactly 3 months after my mom died (married 60 years) 5/2015 and he moved in with me after he got out of rehab. It was a left-sided stroke so unfortunately he is unable to use any of his right side, and speech was severely affected. Communication is very difficult...we tried communication devices but he really can’t use them and isn’t interested. He is incontinent and the only thing he can really do independently is feed himself (needs monitoring as he is an aspiration risk). Fortunately he attends an adult day care facility M-F and is picked up and dropped off daily at the house. He HATES it but he needs the routine and I need a break, and they are really good to him. I also have a busy 15 yo boy who plays ALOT of basketball. I retired in June as I could no longer juggle this circus and work. We have private pay aides who come in frequently so I can tend to other stuff. So here’s the thing.....he has a little dog PJ and they are glued at the hip. When he is here all he wants to do is sit in his recliner with his little dog on his lap. If the dog will not sit on his lap he’s constantly trying to get out of his chair to get the dog or the other two dogs as he wants all of them on his lap (broke his shoulder last year getting out of bed to let the dog out). He eats a breakfast before he leaves and has snacks and a hot lunch at the facility but once he gets home I cannot get him to eat anything other than a snack which he insists on sharing with the dogs. His physical health is good despite his status, and he has had no weight loss. We do nutrition shakes and push fluids. He sometimes becomes combative with the aids as he has started refusing toileting and getting a shower and is sometimes really rude to them....they are not offended but i sometimes have to help calm him down to cooperate. Since he can’t communicate he really has no control over anything in his life and we try to give him choices when the situation is appropriate. He seems to be sleeping more and wants to go to bed earlier, although with the time change it’s dark at 5:30 PM. He has never seemed to be upset about the stroke, losing his home and independence, or losing mom, but we don’t talk about those things other than reminisce and look at photo albums which he seems to enjoy. He has lots of family and friends who visit him and he enjoys visiting with all these people, and remembers them. I have no idea how to gauge his “stage” of dementia as it’s so difficult to determine his level of understanding due to the speech. Does anyone have an idea how I would determine this? I‘m assuming he’s progressing as he is sleeping more (he IS nearly 88 though), is eating less and more focused on the dogs....he has always (since stroke) focused on holding, petting and giving the dogs his food, but it does appear to be worse. Thanks for any feedback, sorry the post is so lengthy.
Hi. Sorry only just seen this post. My dad will be 87in June and suffered a severe stroke in 2016..He had been diagnosed with Vascular Dementia in 2017.His side of the brain affected was the opposite to your dad. He has left sided physical weakness and cannot walk without a gutter frame . He has a permanent catheter. His memory is getting worse and so is his mobility.Dad doesn’t read the paper as he has a small attention span. He can no longer use a phone and is having the occasional accident with his bowels. I would say he is moderate.There is a vascular dementia stage chart on the internet. It gives you a rough idea of the stages..Dad also gets teasy and aggressive when he is not getting his own way/or doesn’t want to do something. I hope this helps somewhat.