Not knowing the right thing to do

[Lk26]

My first post ( well second attempt as i put this in blog first) we are not really sure how long mum has had Alzheimer's she has always been eccentric, disorganised , fiercely independent, capable, clever, interested in the environment, loved walking gardening, making jams, going to the WI and to people other than her close family she is the friendliest, most helpful accommodating person you could ask for.

What we feel was the start of the Alzheimer's was an increasing paranoia, hiding everything and losing bank cards and keys on a daily basis because she hid them so well. She could always cover up on memory probelms so well and presented so well to the doctor But finally we saw the consultant last summer and she was given aricept and anti depressants which have been the most important change that has improved her quality of life as she would threaten to kill herself when we tried to help her. A year on she does not know who we are, doesn't, remember ever having children but still feels that she can do everything herself. We have managed to get carers in every day and after a very difficult start she loves their visit but she will only let them do a minimum. Sorry for going on but I suppose I feel it is like leaving a toddler in a house unsupervised most of the time, provided there is food in the house she will find it and eat it but we cannot get her to eat a meal, luckily she lives in a bungalow and has a aga type cooker so no danger of leaving the gas on, she would hate it in a care home because she loves to be in the garden most of the time and respetitively pulls weeeds and feeds the birds. She cannot bear to be told what to do which is our problem we have to be so careful not to upset her so we are finding lost item,keys, cleaning, changing sheet, washing clothes by stealth. I could cope with the physical looking after but it is the emotional strain of trying to support someone to stay in their on home when every inch of the way she is making it so difficult. I feel angry, guilt, sadness worried about her being safe, sad, lonely. She has money but what other support is there other than the care that we are buying in that will support her staying in her home. Sorry to go on I suppose I want reassurance that the benefits she gains from being in her own home outway the risks

 

[BeckyJan]

Hello and glad you have posted here .

You have reached a very difficult stage of your Mother's dementia. If she is not safe then you do have to consider whether or not she would be safer in a good Care Home. There are some out there that are excellent and will encourage residents to do things eg. feed the birds and potter in the garden. However this can only happen if your Mother is reasonably happy with the idea otherwise she would not be allowed to roam free in a CH garden.

However she could be quite happy as there would be more company and hopefully some activity with other people. (Much depends on the CH).

Alternatively you could get a live in carer which could prove quite expensive especially if overnight supervision is required.

I am wondering if there is any chance of your Mother having a respite break in a suitable Care Home. Places are not always easy to find but it may be worth discussing with someone in the Mental Health Team and/or a Social Worker. Once she has experienced this she may accept the idea more easily.

A Social Worker may also suggest Day Centres which seem to be more successful for women than for male sufferers. This would give your Mother more company and also a chance for others to assess her.

Not sure this will help but hopefully others will come along soon with different thoughts.
Best wishes

 

[Butter]

the benefits she gains from being in her own home outway the risks

Of course they do. Does she want to be there? Does she get pleasure from it? Would she be happier anywhere else?

I kind of recognise her - and I sympathise with her - and I feel I could easily get like her. And I would want to be left alone in my own home to get old in my own way. Of course the burden of real-life decisions falls on you. Yet - maybe she is making those decisions too in her own way? I hope you are able to leave her in her own home on her own terms. But I quite see that might not be possible. We had to intervene in the case of my mother. But I think my father may manage.

 

[hiedicat]

I have every sympathy with your situation, does your mum have a social worker who can advise you? The local council or the local alzheimers society may be able to offer practical advice or at least talk to you about different options. If your mum is not coming to any harm and hasn't had any little accidents and seems to be managing with the help she gets maybe leave the situation until this is not the case anymore. I think there must be thousands of people in a similar situation and at least your mum has people seeing her daily to check on her.
The idea of trying a respite placement is a good one as she might like it and then you will be able to feel less worried about leaving her.

Hope everything works out- the only thing that helps me when I feel desperately worried and anxuios is that everything changes and the stages have different challenges- lets hope this issue resolves itself soon x

 

[Lk26]

Thanks so much it is great to hear your comments, I am a teacher and live two and a half hours away on a good run. I have been staying with mum every holiday and many weekends since things started to get really bad over a year ago. It can feel very lonely because i never know what mood she will be in. My brother lives near and drops in everyday to give meds but he has a young family so He can have a break whenever I am done. I posted the thread when she was sleeping, She is sleeping or at least spending a lot of time in bed and having slept on and off most of the day when she went in her garden and was doing her weeding and fed her birds she was so happy and content. Your comments Butter, are my feelings, it is nice to hear them from someone else. She would hate it in a home and the carers agree she would not like it, there is no way she would consent. Although she is very sociable it has always been on her terms and for short bursts she like peace and quiet. So until there is a crisis we will carry on. Thanks everyone

 

[Big Effort]

Dear LK26,

she has always been eccentric, disorganised , fiercely independent, capable, clever, interested in the environment, loved walking gardening, making jams, going to the WI and to people other than her close family she is the friendliest, most helpful accommodating person you could ask for.

You are describing my mother exactly. I start to get the feeling that Alzheimers strikes especially those who are bright, competent, forceful (in positive sense until the disease strikes and makes them just intransigent).

Two months ago I joined the forum with exactly the same concern. Mum too loves gardening and feeding birds. Also she is never, ever going to accept the home option.

Posting, and reading other people's posts, I have worked my way through an entire month of deep grieving. I have written post after post, with tears running down my face. I observe a slow process of accepting that whether or not Mum wants to go into a home, because of the nature of her illness, it will eventually be home care.

With kind support from many people on this forum, I have found a care home for her, signed her in, and they will take her as of October. My husband and I feel putting her into a home right away would destroy her, so we are going to play it month by month.

When I do put her in, which will be difficult as they don't take dogs, and her dog is her closest companion, it will be through subterfuge. I am going to say she has been "chosen" from many, many other elderly people to test a place out for the aged. She was a journalist until 2 years ago, so I will say they are interested in her feedback, her professional assessment of a new centre for the stimulation/regeneration of elderly people. I will not use the word Home. Ever. I will explain they will have her for just two weeks, while she tests it out. And then get her to "evaluate" it.

A little while later I will say they found her feedback invaluable and would she retest it now. And so on and on. Since cooking up this plan, which I think will appeal to her professional vanity, I sleep so much better at night.

In the meantime I have determined to make the most wonderful birdtables and stock with with culinary delicacies designed to tempt the most spectacular of birds..... and I'll put them up in the care home, so she and others can enjoy them. No cat, no dog, but let there be birds and bird-feeders.

I know this won't help you, but I wanted to let you know I know how you feel and where you are coming from. Given time, and by posting your worries, concerns, and asking for help, you will find people on this forum who have helped their special person to make the transition from independent living to care home - maybe, as others have repeatedly informed me, it will come as a relief to my Mum.

Keep posting and I hope you manage to get your feelings and concerns straightened out so you know the right way forward. Now I am off to bed - and to sleep - manna to me after so many months of active grieving and dispair.

Hugs BE

 

[Witzend]

Thanks so much it is great to hear your comments, I am a teacher and live two and a half hours away on a good run. I have been staying with mum every holiday and many weekends since things started to get really bad over a year ago. It can feel very lonely because i never know what mood she will be in. My brother lives near and drops in everyday to give meds but he has a young family so He can have a break whenever I am done. I posted the thread when she was sleeping, She is sleeping or at least spending a lot of time in bed and having slept on and off most of the day when she went in her garden and was doing her weeding and fed her birds she was so happy and content. Your comments Butter, are my feelings, it is nice to hear them from someone else. She would hate it in a home and the carers agree she would not like it, there is no way she would consent. Although she is very sociable it has always been on her terms and for short bursts she like peace and quiet. So until there is a crisis we will carry on. Thanks everyone

That's just it - so many of us keep going until something forces our hands. We were like you, driving back and forth over fair distances, endless 'sleepovers' and managing everything as best we could for a mother who would not leave her own house even for half an hour. But eventually the 'something' happened and we knew the time had come.

 

[amicalia]

My mum was very similar - she loved her independence, she loved her garden and feeding the birds. But the disease ultimately changed even those aspects of her character - she still likes to sit outside and see birds and squirrels feeding and she is now doing those at the care home that she has moved into.
But she no longer loves her independence, she has become, for now, someone who would rather other people are around, someone who goes with the flow more (I would never have believed it!). Her independence has become something of much less value to her in the last 6 months. She accepts help in a way I'd never have expected.
I am glad though that she has had 2 years since diagnosis happily at home, and only really stopped enjoying her home so much the last few months, leading to a sudden bit of 'wandering', which led to hospital and now the care home.
As long as your mum is happy at home, then it is great to do all you can to keep her there.

 

[alex]

Hi

I have a similar problem with my Mum, she always has been and still is fiercely independent.

Some think the time is getting close when she should be in a Nursing Home, but I once took her for a drive (this was when she knew she had Alzheimer’s) and she said “Please don’t take my independence from me, because it’s all I have ........and once it’s gone I’ll have nothing left, I’ll just be waiting to die”

Sooooo, I’ll help my Mum to keep it for as long as possible because I know her well enough to know she meant what she said.

It’s more difficult as it takes a lot more time trying to make sure she remains safe, but she’s worth every second.

So like you, until something forces our hand she will stay in her own home.

Not everyone will agree with me but I know I’m doing my best.......and that’s all anyone can ask of you.......your best.

Kind regards
Alex

 

[ggma]

From your post I read that at present the benefits do out weigh the risks for your Mum. She wants to be in her own home and you have now got in regular support which will monitor what is going on.

Respite stays can be very truamatic for someone with dementia, moving them to new surroundings can cause real distress, so unless the respite is to give a carer a break then the negative aspect can outweigh the positive. The same can be said for day services, again I have seen people so distressed not knowing where they are asking all day to go home. You seem to be saying that at present your Mum recognises her own home, so that is a plus at this time.

If you Mum is happy and at present you can contain the risks, then many people do remain in their homes with dementia when others would move them. Sadly eventually there is usaually a crisis that means they are no longer able to stay at home, but if you can come to terms with waiting for something to happen that forces a change, , this is an option.

There are now electronic devices that you can use to monitor your Mum even when you are not there, and also to prompt her to do things.

Hope you can keep you Mum where she is happiest for some time, but having said that my Mum was sure she wanted to be at home with her dog, but was getting more and more isolated and depressed, even though by the end we had a family rota and called on her 4 times a day. By the time Mum had an accident and we had to decide it was time for a care home, she really did not recognise her surroundings, was constanly getting lost and so actually liked the company in the care home.

 

[Lk26]

Wow, all these amazing replies supporting me and mum thank you so much it makes me feel so emotional. Mum has just gone back to bed after 20 minutes in the kitchen usually for something to eat. She is luckier than many many people as she has lived in her bungalow for 52 years, it has amazing views over the city and for miles beyond, being on an estate on a hill she can see all the comings and goings off the neighbours which she loves and although not always rational she will tell a storey about the people living there. It is a lovely area and she has neighbours that have lived there as long as she has and they do look out for her, although sadly there health is not brilliant.

Last Christmas I had my mum to stay along with my brother and sister's family and although mum has been to me for Christmas most of my 25 married years it was so traumatic because she was so agitated and distressed and wanted to go home. We can manage short trips out hear locally to garden centres that she loved but any further afield even to some of her other favourite places really distresses her.

Reading some of the other threads I realise that she is still in the right place for her and we can increase care if we need to. I have so many question to ask of everyone but I will try and get back to keep now. Thanks a million

 

[Lk26]

PS and I too have had people telling me she should be in a home, in fact one well meaning lady told me and despite me telling her not to say anything to mum proceeded to tell her it was the best place for her. I watched an amazing transformation in mum and she became the most lucid I had seen her in a year and she told this women how much she would hate it and was actually calmly very assertive about it.

It is difficult when people tell you it is the right thing, but I know she wants to stay here and I will do my best to facilitate it. I don't think she will wander off now she was doing that around christmas but her mobility has deteriated significantly she used to walk miles and until recently she would walk to the neighbours but although she has good days and bad her mobility yesterday was such that she was struggling to walk around the house.