Difficult day

[Babs]

I am finding it difficult coming to terms with both my paretns being in care. My Mother is 90 and has dementia my Step-father is 89. They were living in Sheltered Housing until October last year in Wales. (75 miles from where I live). I was going to help care for my Mother every week-end and at holiday times. I am single and very fond of my Mum. Whilst I was on holiday my step-father had a very bad heart attack. My step-brother and wife were staying the week-end and they arranged for my Mum to go into Residential Care. They had to get back to Scotland as they both work. My Mother was assessed as needing an EMI Home.
I came home from holiday to find my Mother in care and my Step-father very ill in hospital. I was devistated as it was the last thing I wanted for my Mum. However at the time she seemed to accept being in care and all the family, (My sister and two step-brother and their wives) felt I shouldn't give up my home and friends and go and live in Wales to care for her. I live in a terraced house which wasn't suitable for her as she had had a fall the year before and broken her hip and shoulder and walks with a frame. She had been getting worse with her dementia and began to wonder a bit and also was difficult at time at night going to bed and was occasionally incontinent. Also my Doctor said I wasn't well enough to care for them both and advised me against it. My Sister and husband live in Spain anyway and my sister has never been very close to my Mum.

My step-father recovered somewhat and was discharged from hospital in December but decided he couldn't manage on his own in the flat, even with support. We were lucky that the Home in Wales had a vacency and agreed to accept him, even though he hasn't got dementia. He is very frail and unsteady and his memeory isn't very good.

The Home itself is very good and I have no complaints but since her admission and since Mel joined her she has deteriorated very much. She used to be happy with her dementia. Particularly if we took her a run out. Singing all the time. Now she is really fed up and worried all the time. I tried to take them a run last week but she was very frightened and distressed. I go nearly every week, it is an 80 mile journey but I want to see her. She is always pleased to see me but now I am not sure if she recognises me.

I used to go to Wales every holiday. Sometimes I would feel fed up as I felt I had to go but now I really miss them and feel very alone. It seems strange not being able to care for her. I am going up on Sunday but won't attempt to take her out again. I just think it's so sad. She isn't really the Mum I new and her quality of life is very poor now. (She is eating very badly as well and is doubly incontinent). I keep wondering if I could look after them but I don't think I could manage. As well as being very frail Mel gets very depressed in the mornings which used to upset me. I still don't want them in care though but there is really no answer!!!

Babs

 

[Kayla]

Dear Babs,
My Mum is 81 and has been in care for nearly two years now. She wasn't coping by herself at home and it was making me feel ill and stressed trying to to keep up with her medication. She lost track of the time, had hallucinations and her daily routine went haywire. She was very happy in a lovely family run care home, but had to move into a nursing home after breaking her hip.
It is very hard to accept that your parents are getting frail and need full time care, but if it is impossible to look after them yourself, then it is necessary to find an alternative. Without the responsibilities of day to day caring, it is possible to enjoy whatever time is left with them just talking and remembering things from the past.
Your Mum and stepfather would want you to carry on living your life to the full and then sharing your experiences with them, when you visit in the holidays. It is hard to move on to another phase in your life, but essential. Perhaps you could try a new hobby or Adult Education Course, volunteer in a community group or even change jobs in order to make new friends and feel less lonely.
I do know how you feel as I'm an only child and have nobody to share responsibilities with, as my children have demanding careers, but you mustn't feel guilty about your parents being in care, as that seems to be the best option for everybody in your family. I hope you feel happier soon.
Kayla

 

[DeborahBlythe]

Hello Babs, very sorry to hear how much stress and worry you are going through. The trips out for your mum may be contributing to her confusion now so maybe just a little walk near the home?
It's terrible to be thinking " Well maybe I should be looking after them" and even now I too think to myself " Surely I could give my mum a better quality of life than she gets in that home! " Then , I think about all the problems. My house, like yours, is very unsuitable for a fragile old lady and I have health problems and do not think, realistically, that I could cope with her. And you are thinking about taking on two older people! I think you should listen to your doctor. If he/she thinks your health wouldn't cope with it,then I think you should take that to heart and try to think of ways to keep close to your mum in other ways. Maybe she doesn't recognise you on some days. I bet she will remember you again on others.

Try to see what the care plan is for your mum and ask to have some input to it. I don't mean just having a sheet of paper waved at you and your consent sought. I mean ask to see the home's file and go through it looking at the things that are thought necessary and how you think they could be improved upon. Then have a conversation with the manager and gently keep yourself involved in the care issues if you can, without jumping to early conclusions about what is done and why. Try and make friends with the carers too because they will begin to recognise things about your mum and alert you to them.

Re the feeding, there are many threads on TP which go into the feeding problem and also some factsheets on the AS site. People do lose their appetites and in my mum's case it lasted about a year during which she has lost a massive amount of weight, but now she is eating steadily. Not a huge amount but certainly with a will. Food supplements help as does the texture of the food and presentation and frequency ('little and often' was one piece of advice.)

You are a long distance away and must work out how many visits you can realistically make without exhausting yourself both physically and mentally. Do what you can and don't get overwrought about what you can't do. You don't mention a job but the fact that you have lots of friends around where you live is not a small thing. Moving closer to your mum geographically might be a possible option, if only temporarily, not with a view to looking after her at home, but just so that you can be a bit more accessible, but then again, you need your own social support and perhaps cutting away from your circle of friends would not be a good idea.

The other thought is that maybe you could find a care home nearer to yourself, but that would be quite an undertaking, not to mention responsibility if things went wrong, especially if you were looking to move the two of them. And you say that the current home is quite a good one, so that is something to be grateful for. For the moment, I'd try to work with them to find out how you can improve your mum's quality of life.
People go 'up and down' with AD. My mum isn't too happy with her care home, doesn't know where she is or why she is there one moment, but other days she can seem quite tranquil and when physically comfortable, has flashbacks to her former self, funny, lucid and concerned for others. I don't see how else I can help her except by making sure the home knows I am interested and involved in her care when I am up to it. (I am not always up to it..) Like you, I am not blissfully happy with the care home but I can't see an alternative , so I am trying to organise my life around visits and support for my mum interspersed with days when I think about myself, and of course, the future without her.
Take care and good luck, and keep posting here. Deborah

 

[Skye]

Hi Babs

Welcome to TP.

I can understand how upset you feel about your mum. It's not easy to see our loved ones in care, and feel that we've failed them.

But you haven't failed your mum at all. She is ill, and needs 24 hour care. You know you couldn't give her it. Even if you moved nearer to her, it would be too much strain on you, and your mum wouldn't be safe.

She is deteriorating, but that's what happens with AD. If you read the posts here, you'll know that we are all upset at watching our loved ones deteriorate. And change of mood is unfortunately one of the symptoms of AD.

Please try not to feel guilty. Just visit your mum as often as you can, and be thankful that she is safe and well looked-after. Not easy, I know.

Keep posting, whenever you feel low. There is always someone to support you.

Love,

 

[Babs]

Thanks

Dear All,

Thank you for your support. I feel better this evening. It is nice to get things off ones chest.

Re moving Mum and Mel to a Home nearer to me. I have been trying to do this. Mel says he wants to move nearer to me but I have had no support from the rest of the family. Also there do not seem to be many EMI Homes in Trafford. I looked round one home The Ceders but have had different reports about it. Also there are some steps about the place and both Mum and Mel walk with a frame and are very unsteady. The other difficulty is that they need a double room. Also because of Mums continued deterioration I am not sure if a move is a good idea. I think the Home where she is is quite good. I spoke to a Social Worker in Trafford recently she was supposed to send me a list of EMI Homes but hasn't done yet. I must get back to her.

Babs

 

[sue38]

Hi Babs,

Have you checked out this web site which gives reports of care homes and where you can search for homes in your area?

http://www.csci.org.uk/

Sue

 

[jenniferpa]

Also look at this site
http://www.bettercaring.co.uk/

They have quite a good search facility

 

[alfjess]

Hi Babs

I have also been looking for a care home, with a double room, for Mum and Dad.

Maybe I have been looking for the impossible. That is 1st, Residential. 2nd Nursing with EMI attached and all in the same complex.

They are few and far between.

I have still to find somewhere that is perfect, or ticks all the boxes.

Maybe I am expecting too much?

Hope you find somewhere suitable. It is difficult when you are trying to keep a couple together, who have different care needs.

Alfjess

Alfjess