What can we expect from Alzheimers with small vessel disease?

[runner bean]

Hi thanks for letting me join. My mum in law was finally diagnosed this time last year with alzhimers and the report also cites "small vessel disease". Her short term memory has gone. We have great trouble in getting her to attend to hygiene and change clothes as she always says she already washed. Frustratingly the carers are happy to accept this and just leave things. Are there any strategies for this? We do suspect she sleeps in her clothes. Also what can we expect from alzhimers with small vessel disease?
Thanks for listening.

 

[Sarasa]

Welcome to Dementia Support Forum @runner bean.
It is difficult to say what to expect from your mother in law's diagnosis, though as it sounds as though vascular dementia is in the mix as well as Alzheimer's there may be times where she seems to get suddenly worse and then stays at a plateau, as vascular dementia tends to go in steps rather than in a gradual decline.
It's good you've got carers coming in, but it might be time to have a chat with them about making sure she is washing, eating etc. rather than taking her word for it. However she may not be allowing them to help her, and carers coming in are on a strict timetable and don't always have time to persuade the people they are visiting to change their clothes etc.
You also might be getting to the time when you need to consider either more care visits or a move to a care home. It might be worth starting to look at likely homes just in case. Certainly with my mother things were chugging along reasonably fine until suddenly they really weren't any more. I'd earmarked a possible care home and I was able to move her there quite quickly.
This is a very friendly and supportive place and I'm sure others will be along with their suggestions very shortly.

 

[runner bean]

Welcome to Dementia Support Forum @runner bean.
It is difficult to say what to expect from your mother in law's diagnosis, though as it sounds as though vascular dementia is in the mix as well as Alzheimer's there may be times where she seems to get suddenly worse and then stays at a plateau, as vascular dementia tends to go in steps rather than in a gradual decline.
It's good you've got carers coming in, but it might be time to have a chat with them about making sure she is washing, eating etc. rather than taking her word for it. However she may not be allowing them to help her, and carers coming in are on a strict timetable and don't always have time to persuade the people they are visiting to change their clothes etc.
You also might be getting to the time when you need to consider either more care visits or a move to a care home. It might be worth starting to look at likely homes just in case. Certainly with my mother things were chugging along reasonably fine until suddenly they really weren't any more. I'd earmarked a possible care home and I was able to move her there quite quickly.
This is a very friendly and supportive place and I'm sure others will be along with their suggestions very shortly.

Hello Sarasa

Thanks for reply. The wishes are to stay home as long as possible and social worker is supportive. Her GP says try to keep her safe and happy, easier said than done! So at the moment we are sorting out disabled grant facilities to support this. One good thing, she is not a wanderer (at the moment), rather it is very hard to persuade her to come out of the house, we suspect owing to mental health issues she has had all her life.

 

[canary]

The wishes are to stay home as long as possible

Everyone wants this - the person with dementia, the relatives and Social Services.
Things can change very quickly, however, and its wise to have a PlanB, so that if everything suddenly falls apart and there is a crisis, the pieces can be picked up very quickly.

 

[Sandramary]

Hi all
I have not posted before I find it very difficult to talk about what is happening with my mum. I am her carer she has been diagnosed with vascular dementia her short term is badly affected as is her long term memory.
I used to support her to shower and look after her personal hygiene however this became more difficult she resented my ‘interference’ so I took a step back. (I was finding it very hard as well)
She has carers who go in 3 times a day she does not shower or wash now and tells carers she has already washed or she will do it later.
The carers are very good and encourage her but she gets agitated and recently started to get aggressive. I have told them not to persist as I don’t want anyone getting hurt and I don’t want my mother left feeling upset/angry when they leave.
I have been told it’s part of the disease that doesn’t make it any easier. If there is any other way to manage this I would be grateful for the advice.

 

[SeaSwallow]

Hi all
I have not posted before I find it very difficult to talk about what is happening with my mum. I am her carer she has been diagnosed with vascular dementia her short term is badly affected as is her long term memory.
I used to support her to shower and look after her personal hygiene however this became more difficult she resented my ‘interference’ so I took a step back. (I was finding it very hard as well)
She has carers who go in 3 times a day she does not shower or wash now and tells carers she has already washed or she will do it later.
The carers are very good and encourage her but she gets agitated and recently started to get aggressive. I have told them not to persist as I don’t want anyone getting hurt and I don’t want my mother left feeling upset/angry when they leave.
I have been told it’s part of the disease that doesn’t make it any easier. If there is any other way to manage this I would be grateful for the advice.

Hello @Sandramary and welcome to Dementia Support Forum. I am sorry to read about your mum’s diagnosis and her unwillingness to shower. There can be many reasons for this, including being afraid of falling even if the person has help from carers or their families. There is only so much that the carers can do, they cannot, and nor can you, force your mum to shower, especially if as you say she can be aggressive. Would she agree to an old fashioned strip wash at the sink or sitting on a chair by her bedside.
Otherwise the only other thing I can suggest is that the carers continue to gently encourage your mum to shower without pushing the issue if she resists, that way both your mum and the carers are kept safe. Neither the carers nor yourself can force your mum to shower.
Please also remember that you are doing your best in difficult circumstances. Caring for someone with dementia can be so hard.

 

[lollyc]

Hello @Sandramary and welcome to Dementia Support Forum. I am sorry to read about your mum’s diagnosis and her unwillingness to shower. There can be many reasons for this, including being afraid of falling even if the person has help from carers or their families. There is only so much that the carers can do, they cannot, and nor can you, force your mum to shower, especially if as you say she can be aggressive. Would she agree to an old fashioned strip wash at the sink or sitting on a chair by her bedside.
Otherwise the only other thing I can suggest is that the carers continue to gently encourage your mum to shower without pushing the issue if she resists, that way both your mum and the carers are kept safe. Neither the carers nor yourself can force your mum to shower.
Please also remember that you are doing your best in difficult circumstances. Caring for someone with dementia can be so hard.

I was lucky, as Mum didn't mind washing etc., but as she became more immmobile it had to be a strip wash sitting on the commode (the depths dementia takes us to), and hair washing was out of the question. I started using a no-rinse shampoo, which worked really well. Being somewhat slow on the uptake it never occurred to me that there are also no-rinse body washes for all those festival goers! These are readily available from any outdoors / camping shop. Might be worth a try?
I think we have become a bit obsessed about the need for PWD to shower / bath every day. Many come from a generation where showers were unheard of, and baths were once a week, and it probably didn't do much harm. Insisting that they do these things causes upset and anxiety, and often achieves nothing, where "lowering the bar", and accepting a cursory wipe with a damp flannel at least achieves something.

 

[canary]

My mum wouldnt wash or change her clothes and, TBH, it didnt get solved until she moved into a care home. The carers there would go away if she refused help, but would come back again later when they thought she was more amenable and had time to be persistent

 

[Sandramary]

Thank you all for your suggestions I have tried the strip wash and carers have tried leaving a bowl of water and washing things but she doesn’t make use of it.
I was 12 years old before we moved in to a house with a bathroom so I do understand personal hygiene wasn’t as important back then but
I do worry about her health and infections.
I want her to be safe and happy but it is hard and I always feel I should be doing more.

 

[SeaSwallow]

Sometimes @Sandramary we just have to pick our battles. I know that you are worried about the hygiene but hopefully if you keep suggesting she has a wash but without making a big issue of it she will be more accepting.

 

[Yankeeabroad]

hi @runner bean My dad had issues with clothing changes (he couldn’t remember what he’d worn and clothes are never dirty!). Routines can be important for people with dementia so it’s often getting the right fit routine going.

We’ve used a few strategies
1) set out clothes for each day of the week in the closet (used hanging labels on the clothing rail for each day). He only used this for a couple of weeks but it seemed to jolt him to a new routine.
2) he and the caregiver chose clothing for the next day and lay it out on a chair. That way he doesn’t have to decide on what to wear in the mornings and if the clothes are laying there he knows he hasn’t changed.
3) the dirty clothes basket now sits in a prominent position with a reminder sign to place dirty clothes in it every evening
4) we go thru the closet for dirty clothes when we are doing other laundry. It’s much easier for my dad to accept washing “half clean” clothes if it’s a “full load”.
5) the caregivers write down what he wears every day and can refer to this to get him to change clothing.

My mom had small vessel disease also. I suspect things are different for everyone with regards to mental capacity and personality. But I understand one common physical affect is loss of balance. It also affected her appetite negatively. Luckily her GP was happy to use an appetite stimulant in the early/mid stages.

 

[Margy]

I plan to raise awareness for families of loved ones with complex needs including dementia. I feel at present good engagement is sporadic and sometimes safeguarding can be inapropriately called to the wrong people. I believe all services need a basic understanding of the incredible work and often challenges families rise to.

 

[Margy]

Sometimes @Sandramary we just have to pick our battles. I know that you are worried about the hygiene but hopefully if you keep suggesting she has a wash but without making a big issue of it she will be more accepting.

 

[Margy]

I did work one to one with different people, a year each. I found that obviously every person is different and every situation is different and things can change for people in a second. One to one caring helped me to understand and sometimes be ready for things spending three long days with the person. I always asked permission for every action and that worked with one person. I remember I previously did a night shift for an agency my first time there. I was sent by other two on duty to assist a lady to bed. She was half asleep but I asked permission from her for every action I took in getting her a little wash, and into bed. I noticed that she had put her purse into her bra and had stockings on with elastic bands. On gaining permission to removed and wash and hang up for morning, my dark outfit was covered in her flaky skin as I removed them. I asked permission to wash her skin and apply some cream. I returned to the colleagues who seemed surprised that she was washed, changed and in bed.