My husband has Vascular Dementia.

For issues specific to caring for someone with dementia.
My husband is 65 yrs old and after having a nasty stroke in june 2017 was diagnosed with Vascular Dementia in july this year. Unfortunately the stroke left my husband unable to read anymore which has impacted on him greatly He gets very confused and is no longer able to do small tasks without help. He just wants to sit in the conservatory all day and in the evening as since his stroke he hates watching telly or listening to the radio. I have to try and persuade him to go into the living room as he says he feels safer in the conservatory. He seems quite happy just sitting quietly and doing nothing. I have tried to get him interested in different things but he has lost interest in things he once loved e.g. his koi pond etc.
I just feel such a loss as my husband was always in control of our family and finances and was so knowledgable and feels so overwhelming at times to have to watch the strong man I have loved for 43years decline. I miss our life and the close companionship we had so much and not being able to share jokes or concerns with him anymore.It breaks my heart seeing him not being able to work his computer any more or open a bar of chocolate without help. I know there are so many people worse off but just needed to share my feelings as not everyone understands the loss you feel. I know I should be so grateful to have had 43 happy years but I guess when you have loved someone so much it makes the decline harder as you not only miss the person you once had but you also have the sadness of knowing what they are going through. Our little grand daughter shows him her word cards to try and help him read again. She is only 5 yrs and when she sees a picture of them when she was younger, she says' that was the old grand' d was nt it?
Its just hard to know whether to let him stay indoors or whether I should try and persuade him to come out and do more. Am I doing more harm or should I just go with what he wants which is to just sit in the conservatory. If our daughters visit he is always happier to be back the two of us which makes me feel guilty but I know i need a normal life with my family too. I think its the feeling of being torn sometimes between what I know he wants and what our daughters want as they have been through such upset seeing there dad like this. Any advice would be welcome.X
My mum is blind and has Parkinson dementia. We still manage to go out on days out when we can. We call them our “daft days out”

It’s usually just me and mum and for example the weekend before Christmas we went round the local safari park. I gave a running commentary of the animals we saw and we packed a picnic which she loved. She remembered visiting the park when she was a child with the local Sunday school and even riding a camel....lol

What I’m trying to say is that you might find some “ safe” local places to visit. Just you and your husband one on one for a bit and not too far from home in case it kicks off and you need to get home again to the safe area.

I’m on a first name basis with the staff at the local garden centre 3 miles away so we often just pop in for lunch. It gives me a chance to get out the house and a break from cooking. The staff there are aware of my mums issues and go out of there way to help and talk to her.

Your husband needs routine in his life so a visit from a family member whilst it seems nice can upset the apple cart of his normal routine hence him preferring your company. My mum is exactly the same when we have visited one of my brothers......she retreats into her shell and won’t speak to them and it’s a relief to get her home and settled again .

Fingers crossed you can find something local to do together

All the best

Linda x
Hi Pam
We have a lovely forumite called Pet who knows your situation only too well and im sure she'll be along soon to give a fuller answer. Her thread is called her journey and you too are now heading on a different path to hubbys. When she answers click on the number under her name on the right and you will be able to see all her posts. Go right back to her early ones, identify, cry, then see how far she has come since. She is doing well in difficult circumstance, and so will you.

In the meantime, if hubby is happy just sat then I'd say (but am no expert!) let him be so, but work out a way that you can also be happy. If you are happy out then perhaps he needs someone else to sit with him if he can't be left alone, for example

Kr
MrsA
Hi Pam, welcome to the forum. I know Pet will be along presently.
I'm concerned that you don't mention getting any help? What happened when he was discharged from hospital?
Are you aware that he is entitled to some disability benefits, either DLA, PIP, or Attendance Allowance?
Do you have Power of Attorney?
Are you now confident with dealing with the family finances?
Hello Pam. Welcome to the forum and I am glad you have found us.
First of all I'm sad to hear you are going through this emotional situation. People can say they know how you feel, but they don't really, as everyone is different, carers and carees.. Ive discovered this since my husband has been in the nursing home. So what is really suitable for one, isn't necessary suitable for another. It's a journey of discovery and learning to cope, which isn't easy.
My feelings re your husband wanting to stay in the conservatory, is to let him stay in there. If he feels more secure and happy in there, why upset him, and make him anxious and agitated. Occasionally asks him if he is okay where he is then leave it at that. Maybe sit with him for a short while with a cup of tea or what ever, and chat to him about the weather, the news, anything! Fortunately my husband still loves the television which helps me and my family to converse. Or just sit quietly and watch with him. I think now, you have to be guided by your husband's mood. He probably won't have much capacity to understand your emotions a great deal or not very often.Thats hard to cope with too. Now I just treasure anything good. Like when he is surprised l have managed to find him but pleased I have!
You are very important too, and need to do things for yourself that you enjoy. I found that very hard to come to terms with to start with, felt guilty that I may be enjoying a meet up with a friend. Now I know it's good for me.
Would one of your family keep him company whilst you do something for yourself.? Hubby finds it difficult not have too many visitors in one go, as it confuses him, and people naturally start chatting amongst themselves.
You will get used to dealing with the finances. I have, even though hubby always dealt with the utility bills etc Companies I found were very helpful once I had the court of Protection certificate ( another story!!) . Even the garden, I had never done anything in there, but the 1st year I tried, and was quite proud of my achievements! With the help of the expert gardeners on the forum giving tips.
So try not to despair, even though you know that sadly deterioration is going to happen, and that still is heartbreaking.
My younger daughter once said to me " mom, we will make mistakes, wish we had handled a situation differently, but whatever we do, it comes from the right place and it will be true for you too.
Enough rambling from me now
((( Hugs)))
Thank you for your replies. A Year after my husband's stroke he started acting differently. I asked the doctor if he could have him checked to see if he had any more strokes. They scanned his head and he was kept in for a week and sent home in a real state saying no he had not had any more. They could not deal with him themselves but sent him home with no back up for me. About ten days later he got up and went crazy and threw hot porridge over me and was so aggressive I had to leave the house and wait for my daughter to arrive for help. It resulted in us being told if we could not cope phone an ambulance.When he got to the hospital they were concerned for our safety so they sectioned him. The whole thing was awful. They found out he had had more strokes which had caused him to act as he did and then also diagnosed vascular Dementia. He was assigned a social worker who visits monthly and he advised us to claim PIP payment which has just been granted. His visits stop this month and then we will be assigned a dementia nurse. He was put on anti psychotic drug which has made him so much calmer. The consultant that saw him was disgusted he had been sent home before with no medication or help as it was obvious that they had not compared the scan against the original one as the stroke showing up was in a different place than the first one.
Anyway our Gp has been marvellous and keeping an eye on his kidneys etc with regular blood and urine tests. I have two grown up daughters who both work but they are really caring and visit their day regularly and support us both.
It has really helped joining this forum and reading everyones stories. Thank you.X
Hello Pam
You sound a little calmer. Do keep posting, as it is a good place to vent, and just reading that others have experienced similar makes you feel less isolated.
Hi Pam,

Welcome to the forum.
My caring situation is different to yours, so I can't help on the emotional front, except to say it's important to look after yourself. Our wellbeing affects our ability to care.

I'm sorry you and hubby had such a tough journey. Good you now have better support, however.

I don't have any direct experience of caring for someone with dementia so ignore my suggestions if they are no good. The conservatory sounds a great place for him to sit, it's probably quieter and less confusing than the living room and lovely and light and bright. Plenty of decent light is recommended for those with dementia ( we all benefit really, so this is no surprise!) and can help reduce confusion, assist with waking and sleeping habits etc. If you haven't got well positioned bird feeders then they would be a good point of interest; plus bulbs to start emerging in the Spring. Once the weather improves you will be able to open up the conservatory to give hubby fresh air and he may well be tempted to sit outside. You can be close by outside.

Melly1
So sorry to hear what you are going through, Pam. Dementia is a dreadful disease.

I can only base my response on my experience of caring for my mum who had both vascular dementia and Alzheimers. I tried everything to tempt her to show an interest in something / anything. I also took her out to places which I thought she would find of interest. In all honesty, I think I was doing this for me rather than her. She was at her happiest at home where she felt safe. I would say, like Pet, if your husband likes the conservatory, then let him be. It is more important that he is happy in his world, and that maybe you join him. To encourage him to join "your world" will probably confuse him even more.

I know that this is dreadfully sad and lonely for you. Sometimes I think the relatives suffer more than those afflicted. Remember, you are beginning to mourn the loss of the man you have known for so many years. Just make the most of the good days for there will be good days as well.

Also, talk to us. At least we are a safe outlet for those feelings. Every situation is different but the feelings are pretty common for us all.

Thinking of you, Anne x
I don't have any direct experience of caring for someone with dementia, however I do remember forum members mentioning two books that might be helpful. One was called something like Contented Dementia, and the other one was called "A Selfish Pig's Guide to Caring" by Hugh....? He gave a talk to our carers group some years ago, I'd describe him as Amazing, not an accolade I give often!
My son has learning difficulties due to birth problems, covered up for many years, so I was blamed for his behaviour as being a "bad mother". Really upset by this, as I used to run a Brownie Pack of 24 girls single handed for a while!
Finally when he was eight years old, we were told that he'd been brain damaged at birth, and we started down the long road of acceptance. Once we could accept that he couldn't help not being able to do certain things, and why, life became a lot easier for us.
We learned to avoid situations which were difficult for him. As soon as he felt under pressure in any way he would react in a certain way, very difficult when his learning disabilities were being assessed, we could help others to find different ways of discovering what they wanted to know. Even now he's 38, under the Social Services LD Team, I'm still having to explain things.
If you can try to work round his dementia, he will be happier, and hopefully you will be too.
Nevertheless, the time may come when the only option left is residential care, because his condition will gradually go downhill, and your ability to care alone may not be enough. So please don't say to yourself "I'll never put him in a home" because that may become the only option left.
Try to find out more about what services are available in your area. In the New Forest, where I live, there is a company called Colten Care, who are building specialist dementia homes. You might like to have a look at their website to see the work that they do. My mum was in one of their nursing homes, and I know other forum members have used their services too. This is NOT an advert for them in any way, just a starting point to give you an idea of what is possible, especially the respite options.