Putting people into a nursing home - how not to feel bad about it

[emkana]

My dad is 64 and has had dementia for nearly 10 years now. Over the last few months it has got really bad. Especially the nights are terrible for my mum, she hardly gets any sleep, is exhausted and tearful. I feel that she is running herself into the ground and I would be quite happy for her to consider to put him into a care home soon. But she hesitates and doesn't know whether to. The thing is, in articles you read etc. the take on this always seems to be that it's heartless and unloving to put people into a nursing home. But my mum can luckily afford to pay for a very good one and she needs some kind of life too... it's so difficult, how do people feel about it?

No. i don't think it is heartless to put someone in the safe environment of a care home. She could end up getting ill herself as she is working so hard to look after your father.
What about some respite care? This would give her time to see if it is the right decision.
It is obvious that your father is lucky to have such a loving family. Don't let others make you or your mother feel guilty. Dementia is a terrible affliction which unfortunately is not talked about enough.
Good luck.

Thanks theshrimp

I am a regional manager for a series of care homes and deal with these feelings from relatives a lot.

Please do not feel guilty, he will be well looked after and most homes have an open door policy.
Have you tried a spell in respite care for him? This may give everyone an idea of what is to come.

My Nan is in a home as she has dementia. It got very bad for my grandad in the end as he is 84 himself and she was waking up at 2 in the morning and wanting to go out and many more things that i'm sure your mum has experienced. Dh the DC's and I visit my nan reguarly and she is very happy and settled (my grandad also is in the postition to afford a good care home) the only advice that I could offer would be that if decided that its the way forward could someone other than your mum help with the settling your grandad in on the day? My Dad stayed with my grandad while my mum took my nan it was easier as my mum wasn't with my nan 24/7 so it was easier on my nan to be left by someone other than my grandad (i'm sorry if this makes no sense) It is still so hard on my grandad, he visits my nan everyday, he has tried not to go in daily but can't help it. It is so tough dementia as the person has left already. Hoping you and your mum find the right solution for your family

I think that theshrimps idea of respite care is a really good idea. My great aunt recently spent 2 weeks in a lovely care home and enjoyed herself thoroughly. Of course I realise it is different when someone is suffering from dementia, but it just goes to show that they aren't all the awful places that end up on the news.
The place my great aunt went to you can just book a week or so whenever you want it (more or less) so maybe something like that would be a good way to bridge the gap between him being at home and being in a care home full-time

My nan finally went into a home full time last year after gradually worsening dementia. She'd also had periods of respite care which in hindsight was such a good thing as it got my grandad used to the idea of her going in. My grandad nearly ruined his own health trying to look after my nan bless his heart until we all managed to persuade him otherwise. He's really lucky though that she is only up the road so he can see her every day. I know it probably feels like a horrible thing to do but really its the bast hting all round. It gives your dad round the clock care taking the pressure and worry off your mum as well as yourself who is worrying about both of them!!

emkana the very fact that you are concerned shows the depth of thought and feeling you have/ many are 'dumped' no visitors etc. it is often harder for the spouse. to feel guilt is normalin these situations but as you rightly say your mother needs her life. not all care homes are horrendus places. take your time in choosing what meets your father needs and the needs of your family. visit homes on spec to get an instant feel. this is what i recommend to clients relatives. hth

Aw, Em! You've had so much on your plate lately.

Dementia can be very trying at night especially, as some do have severe sundowner's syndrome.

I hope you find some answers and support here.

Thanks everybody.
I will talk to my mum and see how she feels about getting some respite care soon.
The problem is that my dad still recognizes my mum (the only person he does recognize reliably) and he spends his whole time shouting her name and demanding her company, which makes her feel doubly bad about deserting him.

Emkana, I understand how you feel. My dad had dementia for about 8 years before he finally died 4 years ago.

My mum wouldn't put him in a home as she thought it was her duty to look after her. It almost killed her.....

She did allow him to go into respite, but unfortunately he got worse and she blames herself for his death...

I don't think that he did get worse because of the occassionaly respite, just part of the illness unfortunately.

Whatever my mum did she would have blamed herself etc, as she decided not to let him go to hospital near the end, and then said she should have afterwards...

Whatever your mum (and you) decide it the right decision....

I WISH my mum had let my dad go into a home as 3 years after he died, she got cancer and died herself 1 year later.....

I wish that she had had more quality time before he died etc, and I am SURE that all the caring that she did for him took so much out of her that she didn't have the energy to fight her cancer etc....

Don't mean to put a downer on this thread just want to say that whilst I believed at the time that the best place for my dad was in his own home with my mum, I now think differently... The point is that your dad won't get better, so your mums health and wellbeing must come first... sounds harsh, I am probably not putting this across very well....

Love the idea of a home close by so you and your mum could visit very often... wish I could turn back the clock.....

Don't feel guilty, there is nothing that you can do about this. There comes a point in caring for a person with dementia when they need more than can be given in the home environment. They also deed the care of people trained in dealing with the difficulties of dementia, with the equipment to make it easier.

My mum is dying, is in the later stages od dementia, she has been in hosiptal for 5 years now. When she went in one of the nurses took me to one side and said, 'Youcan't give yoiur mother what she needs, we can' He was 100% right.

My mother needs 24/7/365 care. She cannot be left for a minute, she is even monitored at night. She cannot eat or drink, she is doubly incontinent. She spits her food and water at people. She has no idea of where she is, or even who she is, let alone who her visitors are. I have two small children. It is simple, they have to take priority. To look after my mother I would have to put my children into care.

Life is shitty sometimes.

My great uncle is a million times happier in his care home than he was living with my mum. He likes to talk and now there is always someone around to chat to, he goes on day trips and can go in the garden easily - all things that were difficult when he lived at home because it wasn't set up for his needs, and someone trying to live a normal life - having to get sleep, do housework, go to the supermarket etc. - can't always give the person the atttention they need. Now my mum and her partner can visit him every day, which he loves, and still have their own life too.

It sounds very much as if this would be the best thing for your dad now.

will be loking at this thread with interest. My Dad has Alzheimers and my Mum has always said that there is no way she could put him in a home but I'm not sure if she is saying that because she thinks she ought to or because she genuinely thinks it. She has a very busy and active life and I just can't see her giving it all up.

Both my grandmothers were in homes (but just for the elderly - didn't have Alz) and I think my Mum just thinks that any home would be like those - just for old people to sit and wait to die.....

My dad had a stroke, but had dementia too for a couple of years before the stroke. Nights were dreadful. He shouted for my mum continually if she went out of his line of vision.

Respite didn't work because it just unsettled him even more and caused mum even more agro for the weeks after he came home again. We even had to stop his once-a-week trip to the local hospital for bathing as it wrecked his mental state for 48 hours afterwards.

We found we were entitled to a night nurse, to sit with him all night. She was a life saver. Irene... if you are a mumsnetter.. hugs. Mum paid a nominal fee of something like 48 quid a week, and the authorities topped up the rest of the fees to the nursing agency. Social services set this up for us.

The thing with dementia that most people do not realise is the person is still in there. But, they feel confused and very, very unsafe. My sister (a nurse-tutor) has studied this and written a paper that was published (about 5 years ago) If the person can be made to feel 'safe' then life becomes much calmer. He only shouts for his wife because he feels unsafe. Strangers make him feel unsafe.

Sorry this is a long post. I hope it's some help for you. If I can find my sister's research and publication on line, I'll link to it for you.

All the best.

I have never been in your position emkana - nor the other posters on this thread - but I do know that if I ever became ill in this way, I would not want those I love to ruin the quality of their lives, by having to care for me.

I absolutely know that my parents would never wish me to do so for them.

My Mum nursed my Dad for many years, and did wear herself out at times, but they had an on-going relationship and companionship, as his health problems were physical. I would not have encouraged her to do what she did if my Dad had had dementia - because he wouldn't have wanted it.

I really feel for you though - it must be so hard.
You've got so much to cope with at the moment.

Thanks for all your answers, they are really helpful.

Hi emkana. I have Just been scrolling through the threads and came across this one. I totally sympathise with you. My Grandmother had dementia and my grandfather struggled to look after her even though he was old, frail and had health problems (he used to carry her up the stairs every night), he didn't want her to go in a nursing home under any circumstances but in the end admitted he needed help.

She went into a nursing home that specialied in EMI patients, but she went downhill not long after being in there. When we used to visit she never used to know who we were,not even her husband who she'd been married to for 60 odd years.

Anyway, she was only in the nursing home for 1 year and she passed away. We think it was a combination of being in that nursing home and the fact she was in the advanced stages of dementia that was the reasons. She did seem to go downhill fast when she went in the home, like I said we don't know if it was because her condition deteriorated or whatever, but my mum and grandad have never forgiven themselves.

Dementia is a terrible thing. Just wanted to let u know my experience of this terrible condition.

When u are on mumsnet let us know how you dad is won't u?

emkana, my Dad has just been involved in putting my Grandma in a home as she has been in hospital for over a year following a stroke (part of her dementia is brain infarcts) and it has been a great decision. She was incabable of looking after herself and he and his sister are much happier and able to cope now she is looked after and safe.
I spent a year workig as a care assistant in an old peoples home - the people we cared for were very well looked after and it seems a bit like toddlers - once the missed person has been gone for a while, the carers can move in and help and generally the client calms down.
It is certain that youe Mum needs a break and some help, yet this is the man tha tshe promised, years ago, to care for 'in sickness and in health, for better for worse, till death do us part' it must be so hard for her to accept that asking for help with that is not lettin gyour dad down in some way.
I would do it, if I couldnt cope - my Dad has made me promise that I will 'never wipe his bum' - that we will get people to help if we need it.
Hope your Mum can come to terms with this.

To give another perspective, my mum eventually decided to put her parents into a nursing home almost 2 years ago. My grandmother has Alzheimers and my grandfather was very frail physically. We always felt he was embarassed by her condition, sadly probably ashamed . Anyway he died earlier this year and my grandmother actually seems quite happy now. She can't feed herself and obviously needs constant care and attention, but in her own way is content passing her days "chatting" (she's lost most of her coherent speech), flicking through magazines and watching the busy comings and goings of the nursing home. If she was still in her own home, or living at my mum and dad's, she wouldn't have anywhere near the same amount of stimulation.

It's always a difficult decision - I know my mum still agonises over it, but eventually there comes a point where the professionals have to take over. My mum was a nurse and was able to care for her parent for about 18 months until it became too much for her.

I hope this helps.