I can't bear to put my husband in a home

[Marylil52]

I told him when we first knew that something was badly wrong that I would look after him for as long as I possibly could. We agreed that if things became too difficult for me, we would sort out professional care, most likely in a care home.
It has been coming for a long time, D's Lewy Body Dementia, and 20 months ago I left work to care for him full time. The last few months have been incredibly difficult (though I know others have things so much harder - at least we have a nice house, enough money and good friends, even if his children are a lot less engaged than I would like). D is very weak, though still mobile, but increasingly confused and deluded. Often he doesn't know where he is ("I want to go home" he says heartbreakingly) or who I am. His sisters and our friends say it's time he went into a home - I found a nice one not far away, which could take him; and I know that I'm getting close to cracking. I cry a lot and am horribly short tempered with D, especially when he refuses to let his carer wash and dress him (more and more often now) and insists that I do it. I'm pretty much under house arrest at home except for the few hours twice a week when I can get out to shop etc, with a sitter at home. I think I may be getting a bit bonkers. I'm certainly unreasonably angry a lot of the time.
BUT.....I simply cannot bear the idea of abandoning D in a care home, even one that I can visit every day. If I were advising anyone else, I would tell them all the things our friends tell me. But I can't do it. I said to D today, at the end of my tether after his obstructiveness made me miss a doctor's appointment, that we couldn't go on like this and we'd have to find new accommodation for him. He looked utterly stricken and said "but you promised to look after me". What am I to do???? He was and is my darling. I simply don't think I could live with myself if I left him.
I recently bought a flat very close by (a few doors up) as my pension income. Should I move D there and find a carer more or less full time for him, so that I can be near and help him (maybe do 9 days carer and 5 days me every fortnight?). Would that be less cruel than leaving him in a care home? It's a lovely sunny, warm flat, and near friends and family. I know that, with DLB, D will need nursing care in due course. But might this be a good interim measure?
please, what is others' experience? Does this idea make any sense?

 

[Shedrech]

oh Marylil52
your anguish comes across so strongly
and so does your utter exhaustion, emotionally and physically

you are suggesting that you run 2 households in parallel - if you read that someone else was considering this ...... ??

your husband is your darling - he is relying on you to make the best arrangements for his care - he understood, when you discussed this, that you may not be able to physically provide that care on your own
you are never going to abandon him - you are not leaving him
you are arranging for him to be looked after by a team of people to support you both - you will visit often and you will always care for him - you will continue to be by his side and hold his hand throughout

you need to see to your own health and welfare to be able to oversee his care

so keep your promise to him, it's just not in the way the 2 of you hoped; it is, sadly in the way the 2 of you expected
accept the place you have so carefully chosen for him - allow yourself to help him move into the care home and to settle there
then do this kindness for him too; look after yourself

I write with so much sympathy and every best wish for you both

 

[canary]

Hello Marylil, your head knows what the answer is, but your heart is listening to the guilt monster whispering in your ear.

If he went into a care home you would not be "abandoning him" you would be sharing his care. It would be no different to moving him to a flat with a live in carer except that it would be much more expensive and, TBH, from what you have said I do not think it would be workable. Shut out of your mind the image of him saying "but you promised to look after me". Thats not your lovely understanding husband - thats dementia talking - your lovely husband never made you promise anything of the sort and he specifically said that if thing got too hard you could indeed use a care home.

You will actually still be looking after him, you will not just leave him. There will be things to sort out, you will become his advocate, his interpreter, most care homes will let you help with feeding, dressing etc if you really wish too. You will find that the other residents and staff become like an extended family.

Knock that guilt monster off your shoulder
xx

 

[Marylil52]

Canary and Shedrech
Thank you so much for these wise and kind replies. I'm going to bed soon (thank god we have just been offered a 'waking sitter' for two nights a week. She is wonderful. Last Monday, her first night, I felt as if the cava!ry had arrived....); I will think very carefully about what you have just said.
I guess part of the trouble is that I read what some TP writers have gone through (beloved OHs behaving incredibly challengingly, violently, aggressively or just madly) for year after year, and feel as if I'm being feeble. D has had this illness for very many years - it's an atypical version - but only in the last couple of years have things been very hard; the rest of the time the main strain was supporting him in his sadness and fear, and grieving as my darling began to leave me. But he still hasn't quite gone: and I guess that is what holds me back from taking all the advice. The pain is intolerable - but so is the exhaustion.
Such a comfort knowing there are other clear, kind and clever heads here on TP, who know the score all too dreadfully well.

 

[pamann]

Hello Marylil, l made the hardest discision of my life one year ago when had to take my husband into a care home, it was for respite for 2 weeks, my Dr said he should be in full time care, as l was almost at breaking point, the strain of looking after him for 10yrs was just too much for me, l always told myself l would never put my husband into a CH, we have been married 52yrs, so it was not easy, it was the best thing that l did, l have my life back, and l enjoy my freedom from caring 24/7, l visit him every day, l do all his personal care, also do his washing, so l am still caring very much for him, it hasn't been an easy journey, but that is what life has thrown at us, its a Rocky Road. I do hope you can take the same path as me, before you have a carer's breakdown, Take care and look after yourself

 

[canary]

Forget what "others" are going through - you dont know their full circumstances and you can only cope with what you can. You sound physically and emotionally exhausted and if you do nothing them something will have to give. I know what carers breakdown is like - please dont let the thing to give be you.

 

[LizK]

How about trying out the home near to you for a few weeks respite. I was at a similar stage as you 4 months ago when I had to admit defeat and place my husband in a nursing home. He has deteriorated so much that I am pleased that in retrospect it was just at the right time. He is now violent and aggressive and on an antipsychotic drug and a sedative. He has attacked a carer and consistently lays on other residents' beds and refuses to move. Four times he has climbed into a cot on top of a frail old lady.......The list goes on. The nursing home is barely coping with him despite it being for dementia and Alzheimer's so I know I couldn't.

Good luck with your decision,

Liz

 

[Florence.]

Dear Marylil52, everyone that reads your post will be alongside you in understanding what you are going through. My own view is that we make promises to our loved ones that we fully intend to keep but as things progress it often becomes too difficult. From what you say, your own health is suffering and I would urge you to see your GP for help. It is difficult for anyone to make the decision to enter their love one into CH care and it is a decision only you can make. As has been said above, don't let guilt pull you down. You are doing your best but there comes a time when it is in the interests of both the carer and the cared for to go into a CH. It will never be an easy decision and don't wait for the day to arrive when it will be easy, because it won't happen. DO what you know is best for you both but don't ever feel guilty. Dementia makes us all feel guilty! Come onto TP and get as much support as you need. There are others on here who are so much more experienced to advise than me but I send you my very best wishes and understanding and hope that you are able to see a clearer path soon.

 

[CollegeGirl]

Forget what "others" are going through - you dont know their full circumstances and you can only cope with what you can.

I would like to echo this sentiment from canary. We are all different and we shouldn't compare ourselves, although I know from experience that this is very hard to resist.

When I read your idea about your husband maybe living in the flat with a full-time carer, my first genuine thought was 'what a good idea!'

I don't know whether it would work, but perhaps it's something you could try, before going down the care home route, and then at least you won't be forever thinking 'what if'.

Whatever you decide to do, I would like to send you gentle hugs and my very best wishes.

xx

 

[Quilty]

I agree on trying respite. My mum had a new lwase of life in her care home. She ate better, was more mobile and was happy to have so many people around her. Your husband may also thrive so it is worth considering. You can then do the best bits of care and enjoy giving him your time. Keep us all posted. Lors of love to you both. Quilty

 

[LadyA]

I agree on trying respite. My mum had a new lwase of life in her care home. She ate better, was more mobile and was happy to have so many people around her. Your husband may also thrive so it is worth considering. You can then do the best bits of care and enjoy giving him your time. Keep us all posted. Lors of love to you both. Quilty

My husband thrived once he went to a nursing home too! He was deteriorating rapidly at home - he wouldn't eat or drink nearly enough, wouldn't take his meds, wouldn't allow me to help with washing him, changing his pads or clothes. He was very aggressive and sometimes violent. Once in the nursing home, he ate & drank everything he got, took his meds like a lamb from the uniformed nurse, and never had a problem with the uniformed, male staff helping him. He gained weight and was his cheerful self for the first several months, until the progression of his illness caused a decline.

 

[Marylil52]

Thank you, TP friends. One reason I wondered about the flat is that our house is very small. If we could have a live-in carer I'd do it like a shot and hang the cost. But there's just not enough room.
I think, though, that most of you are right, and this is perhaps a way of denying the reality of our situation. I took D to an event in the park today. Lots of sun and music. I sat and cried as I tried to help him eat a falafel, chopped up with my penknife. I had looked and looked for something simple to eat, as D said he was very hungry. The felafel was a huge mistake. Poor love just couldn't do it and I made everything so much worse by trying. This is the sort of thing that a professional would know not to do, and that a loving wife actually makes things worse with, in an attempt to keep life 'normal'. But life stopped being normal years ago and it's time that I recognise this, know.
Your stories of loved ones and CHs very comforting, also bracing. Having set my face against respite after an awful first go, I'm wondering if we should try again. We had a dreadful experience with a very swanky local place - £1,350 per week - which claims to specialise in Dementia. On the first morning D woke up alone and terrified. He threw his meds at the care assistant, and the 'Dementia Lead' (sic) rang me and said, unbelievably, "this isn't the man I met, he's completely different!", not once but twice to me and once to my sister. It seems they don't cater for - or even understand - angry, frightened patients, ie patients w. dementia. I washed, shaved and dressed D, took him home and that was that. But not everywhere is as inhumane as this, I know; and I know too that something's going to break here at home, probably quite soon.
Thank you again, online friends. I'm so very grateful for your support. I send thoughts to all who struggle with this awful illness.

 

[Kjn]

Feel for you.
My dads currently in hospital and if we could get him home we have no idea how we would cope even though we want to, , mum has cared for dad alone with us popping in since first diagnosed 08 , not a day off, no respite , no carers , no breaks . She has finally realised how exhausted she is and she's she needs help as does dad.
It's perfectly natural to want to do it your self, you do it better..and dad in hospital with no staff ..mum has done better, but as things progress he will need one2one.

I wish you well , thinking if you X

 

[canary]

I get the feeling that many of the swanky places spend most of their money on appearances to impress the relatives! Will your husband really use (or even notice) the hyped up facilities?
Go and look at other places and dont worry about somewhere that is a bit scruffy, so long as its clean. The best places have a homely atmosphere and caring staff. Talk to the manager and ask what sort of behaviour they could not cope with - the answer can be quite illuminating. Many places who say that they specialise in dementia wont tolerate night wandering, residents going onto other rooms or refusing personal care ie all the symptoms of dementia!

 

[Kjn]

Thanks for that canary , giving me a think re what I'm looking for.
Think il go looking with brother rather than mum first ..

 

[Beate]

This is the sort of thing that a professional would know not to do, and that a loving wife actually makes things worse with, in an attempt to keep life 'normal'. But life stopped being normal years ago and it's time that I recognise this, know.

I'm sorry but I simply can't let you beat yourself up about this. My OH has terrible table manners these days. Tries to load everything onto his knife or eat with his fingers. I have to cut things up for him and often find myself feeding him when I get too upset about the mess he makes on his own. But I am still feeding him the same food as I always have. He's not getting mashed-up gloop until it's the only thing he can swallow. There's nothing wrong with attempting to keep some kind of normality. Live your life as you always have, just with more props and patience. Help him with his food but don't make a big deal out of it is my advice. And I know it's easier said than done but don't let anyone tell you a "professional" would have done any better. Most so called professionals haven't a clue what it's like to have dementia in your life 24/7. We're all only human but a loving wife is worth ten professionals in my book.

 

[Scarlett123]

Most so called professionals haven't a clue what it's like to have dementia in your life 24/7. We're all only human but a loving wife is worth ten professionals in my book.

(Loud cheering from my arm chair! ). This is so true. And please don't think that someone who has cared for their loved one longer than you have, has a halo, and you don't. Everybody is different. Everyone with AD is different.

None of us envisaged, when we promised to be there "till death do us part", that Alzheimer's would force its way into our lives. My interpretation of "in sickness and in health", meant that I would mop his brow, and bring drinks and tissues to his bedside, if John had a bad cold.

We can all only do our best. My best may have been better than some, and worse than others, but it was all I had. But one thing's for sure. If you carry on, till you drop, then it'll be someone else who makes the decisions about your hubby, and not you.

I went on a Care Home Crawl the year before John needed it. It's a bit like a pub crawl, without the drink. I never went at lunchtime, as I know that's a very busy time, but I would go unannounced. The Manager of the Home where John had a month's respite, which became permanent care for the last 6 months of his life, told me the following:

When I interview staff, I tell them they will be working shifts, they'll be shouted at, spat at, and if they are a different ethnicity, may well be racially abused as well - and the pay's lousy. Do you still want the job?

I liked her. And she'd been there for 25 years.

 

[Kjn]

I'm shocked to find nursing staff of ward of elderly patients (3 def dementia) have no experience. 552299686

 

[Marylil52]

I've called the care home, who are coming to do D's assessment this morning, and the Continuing Healthcare Funding CCG people, to check that they will cover the cost. If they won't we will use savings rather than go somewhere that isn't the chosen place. D will probably go tomorrow. I started cracking yesterday when he refused, for the third or fourth time in a week (can't now remember) to let the carer help him wash and dress and when I tried to get him out of his chair, he crushed my hand.
I told D what I was doing, very gently. He said 'I'll do anything' over and over.
This is completely unendurable and I can't bear it. I've just paid breakfast for us on pretty plates that I bought a pair of. How am I going to live with these things, and with D's clothes and books? I haven't told his children yet as they have been so resistant to recognising the gravity of his illness and will hate me for doing this. How am I going to get through life? I will visit him every day. But how is he going to get through life? He still has some lucidity and this feels unbearably cruel. Friends are urging me forward with this. His lovely care coordinator thinks it's time, though she has put this very carefully, as she must. But this is my D. My darling. If I could call down a thunderbolt and annihilate us both, I would do so now. But I can't and we have to go on through this nightmare.

 

[HillyBilly]

Marylil your distress comes through in your post.
I just wanted to say well done for taking this difficult step and I hope the assessment goes OK today.
It sounds as if you have been at breaking point for some time.

I told him when we first knew that something was badly wrong that I would look after him for as long as I possibly could. We agreed that if things became too difficult for me, we would sort out professional care, most likely in a care home.

You've done everything within your power and personal capabilities and reached the point you and D already agreed on.
I know that others will be along to hold your hand through this time and tell you that you don't stop caring when your loved one has to move into a different environment from home. You will still be able to care but with the help of professionals to take the strain off you. If you wanted, you could take your pretty plates to the CH and still share breakfast time with D. You will find new routines.
Wishing you all the best x