Going into care

[Rosalind]

A residential place has become available at the home where my husband has been having day care 3 days a week. He seems to be quite happy there, and has spent two 2-week stays there for respite, although during the last stay he insisted the home rang me when he had been there for 3 days because he was 'very angry' about being there. I asked what I should say, and they said they would not put me on, and he would soon forget. When I picked him up there was no mention of his anger, although he was very pleased to see me.

It is a case of take it or lose it, and the vacancy is from Thursday. The CPN is coming round on Wednesday afternoon, and says he has to be told he is going there, although it can be presented as further respite. I am about to start a business, and am indeed under considerable stress, which can provide a plausible cover story, not that logic is something he can now follow.

I have been longing to have my own life back for years, and am in many ways relieved, but at the same time am in absolute turmoil about how horrible I am being to him. He absolutely loves our home, and never wants to be anywhere else. In lucid moments he has said 'you can't throw me out', so there is some suspicion on his part, although under normal circumstances he cannot remember anything short term. He does not know who the neighbours are, thinks things in our house get moved by 'the cleaners who come in' (we don't have a cleaner), and there is absolutely constant friction between us. I read other posts, and am ashamed that I am not as determined to stay looking after a sufferer as so many others are.

Does anyone have any tips on how to handle Thursday? He would normally go to the home (which is, incidentally, very nice, with absolutely lovely staff) on Thursday for day care. I am inclined to take him in anyway, and then come home to get his case, and some things for his room - would others agree? I think if a suitcase appears there will be awful scenes. For previous respite his Alz Support befriender has come along to help, and in fact taken him.

Do I have him home for Christmas, or would that be more traumatic? How do I handle visits - will he always expect me to be picking him up to go home?

I only learned about the vacancy last Thursday, and have been through hell ever since. I know there can never be a perfect time for such a thing to happen, and that he will be better looked after there than I can do at home, yet feel I am betraying someone I have been with for 24 years, which is a horrible sensation.

Any advice gratefully received.
Rosalind

 

[alex]

Hi Rosalind

There are no rights or wrongs in these situations...........just whats best for you and your husband. Everyones situation and circumstances are different, so when your reading others posts on tp, the decisions others make will not always be right for you.

You will know yourself if the time is right for your husband to go into care and it sounds as though you've already made your mind up..........thats good because your half way there.

I think i would do as you suggest and take him as normal on thursday, then take his things in, a bit at a time.......................you will feel guilty about your decision but its o.k. to feel guilty, we all do, for one reason or another........but its not fair for you to give up your life.....especially as he is quite happy in the RH and they will give him all the care he needs........ that leaves you free to concentrate on your business..............your not deserting him, your doing whats best for both of you! besides, he can come home whenever you want him to.......as for xmas, i would wait and see how he settles first, you've got a couple of weeks yet before you need to make that decision.

Hope it all goes well for you.
Love Alex x

 

[jenniferpa]

I don't have a spouse in this situation, but I'll give you my thoughts for what they're worth.

If you can no longer care for him at home you can no longer care for him at home. Period. The reasons may be socially acceptable, they may not be, but the fact of the matter is that if you can't do it, you can't do it. I really really admire those people who do care for their spouses or other family members until the bitter end, but I know I couldn't do it. That probably makes me a selfish person, but if by selfish, it means I take care of myself, so be it. Apart from anything else, I have other responsibilities, as you probably do as well, and if I don't take care of myself, I can't take care of them. Do I feel guilty? Yes I do. Is it all consuming? Well no, it's not (except sometimes ) In many ways it's easy for me - my mother has repeatedly said in her more lucid moments that she would hate for me to sacrifice my life for her. I would HATE for my children to sacrifice their lives for me. Yet, as parent who loved and cherished me, does she not have more right to call on me than a spouse would have? So would I care for my spouse if he had dementia? Probably not, particularly if the dementia changed him from the person I married. I understand that it wouldn't be his fault, but it wouldn't be my fault either. I'm not talking about the labour involved in such an undertaking - that's the easiest part, if you are healthy yourself. I'm talking about the emotional strain of caring for someone who is, in effect, a stranger. Now many people who suffer from dementia remain, at their core, the same person they once were, but sadly, some do not. I would feel a duty to ensure they had as good care as possible, but I wouldn't necessarily feel that I had to be the one to provide that care.

Jennifer

 

[Amy]

Hiya Rosalind,
I agree with what Alex and Jennifer have said.
It sounds as though in your heart you are ready for someone else to help share the care, and that is OK. It's also not an irrevocable decision that you are making - if weeks, months down the line, you feel that it was not the right decision for you both, then you give notice on the room.
Sounds an ideal way to get him to the NH, going to daycare and then stopping a little longer.
Take care.
Love Helen

 

[Tender Face]

Dear Rosalind .....

I feel I am constantly in some place between martyrdom and total selfishness..... all I want it realism and balance .... that mum's dementia is NOT the axis on which my whole world spins..... (although much of it seems to at times) .......

Alex and Jennifer had me nodding, crying....

My only advice would be to share those (trite?) words my dad always told me: 'Deep breaths' ...... you must have been barely able to catch yours since Thursday....... and to echo what Helen has said ..... you can take this opportunity and reverse the decision subsequently if you feel that is right .....

I'm learning that doing the best for someone doesn't have to mean you do it all yourself..... (especially when said self starts to feel frazzled and frustrated about it for whatever reason)...

I wish I could the credit it deserves to the person who posted here recently along the lines..... 'Dementia has taken over one life ... it's not going to take any more'....

Hope some of that helps,

Much love, Karen, x

 

[Rosalind]

Thanks, everyone. I have to say husband's behaviour over the weekend has been 100% maddening, which makes me feel all the more certain I am doing the right thing, as it is not fair on either of us to continue as we are.

Very wise niece wrote

'He needs ongoing and increasing specialist support, and you may be pretty nifty at most things, but specialist caring and nursing is, I'm afraid, not on your CV. You've done bloody well to get this far, but it isn't betrayal when you can't actually do it any more. And let's face it, it ain't gonna get any easier. Ros, social services, helpers, care in the community, support groups, helplines, books, pamphlets blah blah blah and GUILT make you think you should cope, but it's the 24/7, clock-watching, stop-start, depression, resentment that will grind you down. It's not betrayal, it's common sense.'

This poor niece has just been diagnosed with MS. I only hope I can give her the same level of support she has given me.

 

[Nell]

Hi Rosalind,
The "guilt monster" (with whom we are all so familiar!) is NOT a good adviser! He (she?? ) tells us things that make us feel worse not better - and which may ultimately NOT be in the best interests of our loved ones.

Residential care is not a bad thing - it may not be ideal, but is anything in life ideal?? It sounds as if you both already know the place and presumably are happy with it. Hopefully you can visit regularly and if appropriate, have your husband home at times.

My Mum is in a home and I know I could not possibly care for her as well as she is cared for there - even if I gave up work and we moved house (our house is not suitable for her). The resentment Iand frustration and despair I would feel would prevent me from giving my care wholeheartedly.

Even with Mum in the home I find it hard! Ihave HUGE admiration for those who can keep going but I know it wouldn't work for e. I think Jennifer is so right when she says
If you can no longer care for him at home you can no longer care for him at home.

Take comfort in the knowledge that you are making the best decision for both of you and remember you have the very best of caring wishes from all of us on TP.
Nell

 

[mocha]

Dear Rosalind,
Your first post sounded as though I had written it word for word myself. My husband had been diagnosed as needing EMI nursing care which effectively wiped out a lot of the local care homes.We were found a marvellous Nursing Home where he has had two lots of Respite because of it being a new section it still had vacant beds. Almost three weeks ago I was told that his respite for this month had had to be cancelled but then three days later a permanent bed became empty. Like you I had to make my mind up immediately or lose it without any hope of another in the near future. I think the NH is the best I could ever hope for and they already knew and liked Ron. He went in on the 29th Nov. and has settled in so well that it is easing my concience. He is happy because something is going on all the time, especially this time of year. My daughter said"Look on it as Respite in reverse and he can always come home for the day or longer" I hope you can come to the conclusion that makes you happiest.
A Merry Christmas to everybody when it comes. Aileen. PS You don't say how old your husband is.

 

[intensityp]

do not regret it later

Thanks, everyone. I have to say husband's behaviour over the weekend has been 100% maddening, which makes me feel all the more certain I am doing the right thing, as it is not fair on either of us to continue as we are.

Very wise niece wrote

'He needs ongoing and increasing specialist support, and you may be pretty nifty at most things, but specialist caring and nursing is, I'm afraid, not on your CV. You've done bloody well to get this far, but it isn't betrayal when you can't actually do it any more. And let's face it, it ain't gonna get any easier. Ros, social services, helpers, care in the community, support groups, helplines, books, pamphlets blah blah blah and GUILT make you think you should cope, but it's the 24/7, clock-watching, stop-start, depression, resentment that will grind you down. It's not betrayal, it's common sense.'

This poor niece has just been diagnosed with MS. I only hope I can give her the same level of support she has given me.

I have not much to say because when you mentioned your husband going into care and in the same sentence your new business .........maybe people on here are being polite..... do not ask for help.. shout for it...you will be surprised how fast it comes...keep him a while longer.. remember him whole and remember that he shared with you the gift of children...my dad passed away last week of AZ ..the closer you are ..familiar the face.

 

[jenniferpa]

I'm sorry IntesityP - I think you need to be very careful about being judgemental on a board such as this. We are all coming from different places, and frankly, I think your comment is simply out of line (so that's me being judgemental if you like). I could go on about people who think their solution is the only solution, but I won't.

I understand that you're grieving, and for that I am truly sorry, however...

Jennifer

 

[Tender Face]

It's a fact of life that many (most?) of us have to balance emotional choices with sheer economics..... what we would love to do, even like to do, is thwarted by need to do or must do....... just to exist......

My Utopian world would be one in which I could care for each of those who need my attention, share 'quality time' with each (for my benefit too!) - and someone gift me an income which would help pay the mortgage to keep the roof over my child's head.... let alone mine....

Intensityp, I can understand your sentiments at this time ...... but I have to say I think Jennifer is so right - no two people here are in the same situation .... therefore they neither have the same problems nor face a simple proven solution.... nor can anybody judge their personal decisions ..... we each have to do what's best as we see it at the time......

Whether through economic choice or other cirumstance, 24/7 'caring' is not necessarily or cannot be necessarily the sole focus of some of our lives..... will I regret saying that when I no longer have the "opportunity" to care for mum?

No. Because I know I'll do the best I can for as long as I can .... but I also know the limits of what I can do...... as well as OTHER things I must do.....

Hope that makes some sense...

Karen, x

 

[intensityp]

I'm sorry IntesityP - I think you need to be very careful about being judgemental on a board such as this. We are all coming from different places, and frankly, I think your comment is simply out of line (so that's me being judgemental if you like). I could go on about people who think their solution is the only solution, but I won't.

I understand that you're grieving, and for that I am truly sorry, however...

Jennifer[/QUOTe

however...... I stand by my quote because my experience of AD is perserverance and if you want to hide it so be it... everyone is different.. its very few that see it through..their loss... I wish people on here would be truthful about how they really feel...sorry for having the voice my dad lost ..... but i have the strength of my mother who nursed him til the end... so shame on me ( out 0f line) or shame on you ( ) I can not put your words in it

 

[pammy14]

As you may know I have been caring for my sister for 18 months but think I may soon have to give up. I gave up full time work and found part time and with paid care in some afternoons we managed but it has become increasingly harder, When she first came noway would she have consented to go in a home but now she really won't know as when she goes to respite she doesn' know how lon g she has been there,

Its not just the physical caring that gets you but being unnable to just pop out everything has to be arranged in advance.

Going to the park with the grandchildren becomes a no-no. we just cant get all in the car together and its not always possible to push a wheelchair and apushchair together.

up to last weekme and my husband could pop out fo an hour and leave my 23year old son but last week he had to take her to toilet and she needed pooh, well cleaning up an elderly lady- its just not fair on him and I shan't leave him again. Sh e seems to be getting doubly incontinent and i don't think \i can cope with this- perhaps if it was a spouse or even my mum I would, but i feel perhaps I should give myself back to my family, don't know but perhaps the time has come.

sorry to go on but it is a decision to be made for our family.

 

[jenniferpa]

Dear Pammy

When you write "give yourself back to the family" it really struck a chord. You have given excellent care to your sister when she had some inckling (sp?) about her surroundings, and when a nursing home placement would have cause her tremendous distress. Now, from what you say, she has reached the point where she is more or less unaware who is performing that care, or where it is taking place. Furthermore, the care arrangements that you have put into place are no longer working for her current situation. On top of all that, you have children and grandchildren that need you. As far as I can see, you have done more than any reasonable person could expect. Yes, you could try going for the halo, but at what cost to the rest of the family? Whether it's a sibling, a spouse, a parent or a grandparent, I feel very strongly that the well-being of the "healthy" part of the family should be given at least as much weight as the needs of the dementia sufferer, particularly when that sufferer has reached the point you describe. And what about you? Do you not deserve some level of care? Yes, you're going to feel guilty, but better to feel guilty about something you cannot realistically do something about (i.e. your sister's dementia) than feel guilty about not providing the care and attention in an area where it may help (i.e. your family).

Love

Jennifer

 

[ludwig]

My mum will have been in full time care for one week tomorrow. Its the guilt that does for you. We (my two sisters and I) had been managing (with part time paid carers) for almost two years but we hit the brick wall last weekend.

Mum became incontinent, kept falling out of bed (and only I could pick her up on my own) and was eating/drinking very little. She didn't know where she was most of the time and we accepted full time care was the only option. Last lap now I think, and we haven't had the 'please take me home yet', I'm not sure if any of us could take it.

Our carers were wonderful and there are three of us to share the load but I have never had such a gut wrenching decision to make but we had no other option. My sisters found a good place for her to go, but rejected several more. All our lives have been on hold for almost two years.

Sorry, very raw at the moment. This thread looked appropriate. If you cant cope any more, you have no option, you HAVE to do it. We did and it was truly awful but still the right thing to do.

Keep smiling

Ludwig

 

[Martyn]

I find all this very humbling. I have not had any experience of AD in close relatives or friends but I am soon to take up a new job as an "Activities co-ordinator" in the Alzheimers Wing of a local nursing home. I have visited several times before deciding that I think I can "do the job" and I have requested advice on another forum. All I can add, as a relative outsider in all this, is deep down you will realise that you can only do so much and eventually you have to hand over to people who are properly trained otherwise you will end up hating(possibly too strong a word) yourself and the person you are caring for.
You all have my greatest respect
Martyn

 

[Grandaughter 1]

My Grandad went into a nursing home on Friday. We have been agonising over this for month's but in the end it was taken out of our hands. Grandad had a nasty fall at home and the social workers and GP more or less took the decision out of our hands.

The family know deep down it is the right one because my Nan was making herself ill looking after Grandad, and, he was not safe at home anymore as he needed more care than Nan could give.

I think it is admirable if you can continue to give home care but on the flip side my Nan was getting worn down and ill and that was making her resent Grandad.

Of course now Nan has had several nights rest she is feeling extreme guilt and upset about her decision.

I think my point is that only you know what is right and everyone elses circumstances are totally different.

I hope you manage to make a decision you are comfortable with.

Louise x