Family engagement

[tss502]

Hi,

My husband who has young onset dementia, aged 57, had a difficult Christmas. We spent the time, as we normally do, visiting close family; however his discomfort at being out of his home environment was evident. A close family member has now suggested to me that he should avoid being outside of the home environment as much as possible to minimise his anxiety. She's also suggested that he needs ongoing supervision and assistance with washing and dressing, and suggested that I get extra help in to do this.

We currently have around 15 hours of care per week - much of this is companionship support as I work full time, and we needed someone to come in during the day and do activities with my husband to help him keep engaged and occupied. He goes to a volunteer placement once a week, again, with support from a carer, and we also have a volunteer who comes in and they play table tennis together. My husband is physically very active and loves being outdoors, especially walking and cycling.

We've recently started having a carer coming in at lunchtimes to ensure he gets a hot meal. I'm reluctant to engage further support as I don't really feel he needs it at present. He can get washed and dressed himself, mostly without any prompting from me, but sometimes with minimal prompting. He did struggle with this when we were away over xmas because he was in an unfamiliar environment, and we also noticed that he was struggling with things like getting his sweater on the right way round. I fear that if I put more support in in this area it will lead to some sort of 'prescribed withdrawal' whereby he will become increasingly unable to do these things for himself because he doesn't have to.

She also mentioned about him struggling with toilets when we were out and about. He did have some difficulty with this, but being pragmatic about it, it didn't lead to any 'accidents' and surely it's better for him to be able to go out and about and for us to manage this risk as much as we can rather than trying to keep him at home. I want him to be able to live as fulfilling a life as possible, for as long as possible, with plenty of stimulation, which means continuing to visit family and friends and going to (and staying in) unfamiliar places. I recognise that he may not always be comfortable with the level of stimulation, but I do feel that it has to be better for him to be slightly challenged than for us just to give up on him. I'd prefer for us to try and find pragmatic solutions and live with the risks rather than totally wrapping him up in cotton wool. Am I being unrealistic?

 

[Grannie G]

Who is this close family member ? Did you ask for advice?

Does this close family member have experience of dementia or might it be thought it is convenient to keep your husband out of the way.

Your husband sounds as if he has the best quality of life possible at this stage in his illness and is nowhere near the stage of staying behind closed doors.

It sounds to me as if you are doing everything possible to keep your husband in the community for as long as you can. All credit to you.

 

[tss502]

Hi,

She's his sister and I have no reason to think she would want to keep him out of the way or have any motive for doing so; she's so far been highly supportive and has tried to stay closely involved in as supportive a capacity as possible. I do value her viewpoint, but I think she sometimes goes off at the deep-end and sees things as being more serious than they are, because she's not with him every day like I am, and the changes, when she does see him, must seem more pronounced. Part of the problem is that we are quite far away from each other so it is difficult to have day to day contact, but she does ring weekly and tries to visit every couple of months. I guess I am trying to find a balance between welcoming and encouraging her involvement and not letting her take over, to put it bluntly. She thinks she is being helpful but sometimes she does come across as pushy.

 

[Shedrech]

hi tss502
I agree with Grannie G, from what you write you are managing thoughtfully and sensibly giving your husband a high quality of life also taking into account your needs, and deserve a pat on the back
seems to me that although your husband's sister's view veers to one extreme, it has been useful to you to use as a means to take a good realistic look at how you are coping and the support you have in place - maybe keep this in mind, and when your two views meet, it'll be time to have a very careful review - she does, after all have her brother's welfare at heart, even if she wants to mollycoddle him a bit too much
long may you and your husband enjoy outings together
best wishes

 

[2jays]

Hi,

She's his sister and I have no reason to think she would want to keep him out of the way or have any motive for doing so; she's so far been highly supportive and has tried to stay closely involved in as supportive a capacity as possible. I do value her viewpoint, but I think she sometimes goes off at the deep-end and sees things as being more serious than they are, because she's not with him every day like I am, and the changes, when she does see him, must seem more pronounced. Part of the problem is that we are quite far away from each other so it is difficult to have day to day contact, but she does ring weekly and tries to visit every couple of months. I guess I am trying to find a balance between welcoming and encouraging her involvement and not letting her take over, to put it bluntly. She thinks she is being helpful but sometimes she does come across as pushy.

My first thoughts on this was she was trying to help you. Not necessarily in a delicate way, but she was trying to be a support to you

She possibly sees things from a different angle than maybe you do. Maybe sees things a bit more clearly than the person at the "coal face" as it were.... I only really noticed how much mum struggled when she moved into care. It was very obvious she was much further down into dementia that I actually thought she was.

I think she is right to say get people involved with him, and you seem to have that covered so far

But what about help for YOU

Don't forget yourself and your needs. I know what we actually want and can't have, the person as they were, not as they are now, so my thoughts are you need to start finding a way through all this nightmare in your life so you don't loose you as well as your husband. Maybe that's what she was trying to say... maybe I'm being "kind" about her motives and maybe they are her way of not having to see her brother like this.

Only you know how it is so only you can judge that

Just my thoughts, and it wasn't my husband that had dementia it
was my mum, and I feel that's if it's a partner, that's worse xxxxxx

 

[john51]

I have dementia and much of what you say sounds very familiar. For me my sons wedding in November was a bigger challenge than Christmas.

I do get very anxious leading up to social events. But on good days recognise the enormous amount of planning my wife does for me. Most important is somewhere quiet to withdraw to and the firm suggestion I go. Equally important is the suggestion I return to the party.

When we stay in unfamiliar rooms like hotels my wife takes me through the washing and dressing routine as well as helping me choose clothes well before each is needed.

You mentioned toilet problem. I have no feeling of my bladder filling or emptying although the other end is fine. When I am at home am in routine I use an alarm on my phone to remind me to go. At other times I use pads prescribed by the continue service. I am still quite early in my dementia journey and am able to change these and disposed of the dirties myself.

Today is a good day but my wife helped write it. I hope its useful

John

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[Spamar]

Hi tss, I would go with your gut feeling. If OH is managing with your help that's fine. There may well comes a time when he needs more help, but it doesn't appear to be yet. My OH went from being able to choose his clothes and dress himself to having to be supervised and helped at every stage, but it was done in small steps and took years rather than months. I never felt like butting in if he was coping OK, but he appreciated the help as he couldn't cope with the next stage. On the occasions when I was called away in mid -dress, do to speak, the results (such as jumper on legs!) always made me realise I was right to help.

John, it's nice to hear from you. When we had a number of people coming, I would put OH in the conservatory and people 'visited' in ones and twos. And I always introduced them, hi darling, here's Janet and John to see you. You remember them from bridge club? And when they'd finished, I brought someone else along. And all those who hadn't seen him for a while would find me and say, ' isn't he well, he was chatting away happily'. I used to think I should say, well he wouldn't be if he was in the melee in the living room!

I think basically it's a case of suck it and see. What works for one might not work for another. But the carer has the best view of the caree, don't listen to anyone else unless they're a professional well used to working with dementia.
Good luck to you all!

 

[tss502]

Hi tss, I would go with your gut feeling. If OH is managing with your help that's fine. There may well comes a time when he needs more help, but it doesn't appear to be yet. My OH went from being able to choose his clothes and dress himself to having to be supervised and helped at every stage, but it was done in small steps and took years rather than months. I never felt like butting in if he was coping OK, but he appreciated the help as he couldn't cope with the next stage. On the occasions when I was called away in mid -dress, do to speak, the results (such as jumper on legs!) always made me realise I was right to help.

John, it's nice to hear from you. When we had a number of people coming, I would put OH in the conservatory and people 'visited' in ones and twos. And I always introduced them, hi darling, here's Janet and John to see you. You remember them from bridge club? And when they'd finished, I brought someone else along. And all those who hadn't seen him for a while would find me and say, ' isn't he well, he was chatting away happily'. I used to think I should say, well he wouldn't be if he was in the melee in the living room!

I think basically it's a case of suck it and see. What works for one might not work for another. But the carer has the best view of the caree, don't listen to anyone else unless they're a professional well used to working with dementia.
Good luck to you all!

Thanks to all of you - I do appreciate your perspectives on all of this, and especially from John. My husband says so little about how he actually feels about any of this and it's really difficult to get anything out of him other than 'it was OK'. I think managing the time spent with other people would work well, and allowing for 'down time' as well, but also making sure that he does re-engage after regular breaks.

And for me - well it's also important that I can continue to see my family and friends and to get out of the house, other than going to work - so I really feel this is important for my sanity and continued ability to cope as a carer as well.

 

[Spamar]

TSS, you really do need to see friends etc. I managed it by getting OH to daycare once a week, even in the pretty early days. We also both went to AS, where he was often taken off my hands do I could chat without him hearing! As time went on, daycare time increased. I also had a carer for 3 hrs a week to take him out for a walk, and I had the facility from a village carers group to have someone as and when I wanted, if I had a hospital appt for instance. Always coffee and cake! He would do practically anything for coffee and cake!
My advice, find what's happening in your area and sign him up!
To be fair, I sometimes put the spin on that ' you know I haven't been feeling well, I've had this idea.......' he would do most things if he thought it would benefit me! Lucky me! However that didn't apply when delusions were around!

 

[john51]

It's hard to talk about how you feel. It's easier to write like on TP. It helps work it out in my own mind too.

I got lost in town this morning. I wear a medi alert medallions with contact details for my wife. Two wonderful lads from the local college found me sat worrying. They called my wife then walked home with me.

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