Coping with trying to keep my mum in her own home....but should i?

[Cag34]

My 87 year old mother was diagnosed with alzeimers a year agnly 2 years ago she was driving, going out regularly and independently.Within this short time she has now started to sit in her dressing gown all day and watches tv constantly.I do my best to try and motivate her, take her out several times a week but it s a very lengthy process now, as if I ring to remind her, she forgets....
She has carer each morning and 5 evenings, mainly for meds and in recent months evening meal.
I am struggling with such mixed emotions at the moment, as it feels that my whole life is based around keeping her at home, as she wants to be, but to sit for hours each day with no stimulation surely is not good.All the people she used to see at all her various groups, social occasions etc, seem to have disappeared.She was always giving people lifts, helping out etc, and suddenly she s just sitting alone all the time.I can t be there all the time but even tho I do loads I often feel guilty that I could do more.She forgets that she forgets....so it's not that she knows I m doing all I do. My sister lives abroad,{ my other sister died several years ago...]and she no longer works but gives very little support, a visit this year for 4 days which just entailed doing all the nice things...Basically, I feel that I m on a piece of string running 2 households, not giving my children,my grandchildren enough time, not giving myself,my husband, any time...and beginning to feel very very depleted...But what s the answer? All these mixed emotions running through from sadness, guilt, anger, frustration...is there an answer?W ould she benefit from being in the right residential home, with activities and stimulation, or would it be the end of her...how do I know? as she s always said she wouldn t do that......or is it a question of waiting the inevitable no other option situation...

 

[Delphie]

My mum also always said she'd never go into care, but she's been in a lovely care home for about two years now. She doesn't realise she's in one, even though she's quite (maybe superficially) lucid at times.

It took her a while to settle but she was very lonely (and cold and dirty and eating rubbish) at home, and her living 'independently' was having a huge impact on my life, my health, my work, as I juggled far too much. Whatever I did, she wasn't happy, and because I was running myself into the ground neither was I.

You can see where I'm going with this! A good care home can improve the quality of life for the loved one and can give you your life back. You can still be involved in the care with frequent visits and, if appropriate, trips out etc.

I still feel sad and guilty at times of course, but my health has improved and I'm sleeping properly again, and I have time for my husband and kids, so even if my mum wasn't all that happy there would certainly be a net gain. But I can see objectively that she is much better off in care, so that helps to keep the guilt monster away!

Good luck with your decisions. They're not easy. Nothing much about this is.

 

[marionq]

Why not arrange a 'holiday" for of two weeks respite in a care home of your choice. This would let you see how she and you coped with the situation. Even if she is reluctant sell her the idea of it as convalescence for her and a break for you.

 

[RedLou]

As mentioned elsewhere on TP my dad is now effectively bed-blocking in a ward and complaining bitterly that he wants to go home. (He will only be released to a dementia nursing home.) But when he was at home he was equally unhappy, phoning me to tell me his life was a misery. Even when not that (superficially) confused I am under the impression that 'home' means the past. Not the distant past in his case but the past when he was well. So I really think that getting a parent safe and comfortable and paying attention to your kids and grandkids is a good way to proceed. This is in my opinion, based on my own experience. To be honest, I don't think there is 'happiness' with dementia - although so many of us try to make our relatives 'happy' again. But there can be safety. Please don't feel guilty. You're clearly a thoughtful, unselfish, lovely daughter doing her best in the face of this impossible tyrant of an illness.

 

[Beate]

Have you tried getting her into a Day Care Centre? That would address the social isolation and still enable ger to live at home.

 

[Carrie Anne]

We appear to be in the same position. My brother lives abroad and it falls to me to do the everyday stuff. The trouble is just lately that the stuff is taking over my life. Every week there appears to be a new problem and a new duty to add to the list. There just isn't time to do the nice stuff which she so needs to have any kind of a life. Like your mum, most of her social contacts have disappeared into the ether and she always has an excuse why she can't go out to her old church events.

My brother and I are slowly trying to introduce the idea to her that life could be so much better if there were more people in her life and more activities in her day. We have found a very good carehome which we feel would supply a much better quality of life. I'm sure this is the way to go for us, but it's so difficult isn't it when they forget they forget and can't see why they should leave their home?

We are going to keep plodding away with this aim and I look forward to reading how you get on with your decision making.

 

[Cag34]

Thanks for all your helpful suggestions.I think respite for a week would be a good next step.So difficult isn't it?!
Guilt seems to be such a common feeling for us all.It s so helpful to hear the experiences you ve all had, and I really appreciate that.Another problem is that she has a dog that belonged to the sister I lost 5 years ago.My mother adopted her, I already have two dogs so couldn't. The dog has kept her motivated, and is also company, but now she has stopped taking her for a walk which is now also often on my 'to do' list and causes further feelings of guilt!

 

[Cag34]

Thanks Carrie Anne.It s good that you have support from your brother.I wish I had similar from my sister. She allegedly rings my mum, hears her say that she s fine, and doesn t think to actually communicate with me or ask how I m managing.Admittedly this is probably of my own making, as I have let my sister know what I think of her fleeting 3 or 4 day visits to do the nice trips etc, and not even staying at our mother s house!!!!Grrrrrrr!
Yes I think in the new year I ll sort out a week s respite and see how things go.
So difficult isn t it!

 

[Witzend]

Have you tried getting her into a Day Care Centre? That would address the social isolation and still enable ger to live at home.

Daycare can be fantastic, but if someone is living mostly on their own at home, and their short term memory is already very bad, someone would usually have to be on the spot to make sure they're up, dressed and ready.

To Cag34, I am sure that 99.9% of people, with or without dementia, would say, if asked, that they don't want to go into a care home. But IMO, by the time carers are utterly exhausted with it all, and it's seriously affecting their own family life, it's time to think about residential care. There are some very good care homes out there, only it can take time to find the right one. What a lot of us do is put it off and put it off, until for some reason such as a sudden sharp deterioration, or a bad fall, or for whatever other reason 24/7 residential care becomes an urgent necessity. And then it becomes that much harder to find a CH you are entirely happy with, that actually has a room available. Many people do very well in care homes, and in fact improve in their physical health.

If you are feeling like this now, I would honestly start looking. I know others may disagree, but having been through all this twice, and having been a 24/7 carer at home, I do firmly believe that other people's lives are important, too.

 

[Cag34]

Thanks Witzend.. I ve had the thought before that it would probably be at a crisis point when a home would suddenly be necessary, and like you say, there wouldn t have been the chance to search for the appropriate one....So it seems that now is the time to start the ball rolling, however difficult.
Also agree about the day care.I have to be round a good 2 hours before we are due to go out anywhere, and sometimes there just isn t the time!

 

[elizabeth20]

You are living my life and that of many others I dare say.
My mum also has a dog but he has been a constant companion for 14 years and is her 'baby'. I have also considered the care home option and have looked at a couple of local ones on the Internet but it's difficult as mum would have benefitted from care home provision 4 out of 7 days last week but over the weekend was the best she had been in weeks and I thought I cant put her in a home yet it isn't time. I know that if she deteriorates at the speed she has over the passed 6 months then care homes will b a necessity as I can't give up anymore of my life and need to start living and enjoying time with my husband and family they have been on hold for long enough and don't complain but worry about my health.

Back to the dog though it does cause us lots of work as she forgets to let him out and it often toilets in the house - gross! I'm always cleaning up after him but he has been a faithful companion and it isn't his fault so we do forgive him. I think if the dog dies (it is very old ) then the thought of a care home may come easier than it does presently.

Have you asked the LA about social time for your mum she may have to contribute financially but it would allow you a bit of worry/guilt free time and she will benefit from the stimulation. We pay privately for a couple of hours a week mum didn't qualify for LA funding - in good weather she goes out in her wheelchair sometimes spends time looking at photos or listening to music. It's not a lot but I find that in our situation every little helps.

I've often given up time I could have spent doing something with friends and family even come home from holiday early to make sure mums ok especially when she's having a bad time. Usually I get there to find she is asleep or has moved on in her mind and the crisis is over - then I have the regret of leaving the rest of the family as I obviously could have gone to the pub or popped in to see the grandchildren or stayed looking at that glorious view just a few moments longer.

It's a cruel cruel disease that destroys everyone in the end one way or another but self preservation has to b paramount I'm learning the hard way. Take from all the advice you will receive here and good luck x

 

[Cag34]

Thanks Elizabeth.The forgetting to let dog out yes! And coming back from a holiday early also!
We did try Age UK an hour or two each week where someone came round with the plan of going out for a walk with mother and dog....My mother would just insist that shewas quite capable of taking the dog out herself, and would do later...so unless I was physically there to persuade her to go, which I couldnt always manage, it became poinless eventually.
Thanks again for your help.

 

[spuddle]

im not really in a position to give advice but i too am in a similar situation (apart from the dog). sister living abroad and me doing the day to day stuff. also the dissapearing freinds. mum also used to run around giving everyone lifts etc. she still drives but only drives to the shops now, when she bothers to get dressed. i spoke to one of her friends that she used to go out with regularly who now seems to avoid her, she said 'oh its hard work, your mum isnt much fun anymore. it made me really angry as i know if it were the other way round mum would have done everything to help her friend. grrrrrrr to alzhiemers and all it entails

 

[cathv]

keeping mum at home

Dear Cag34

I understand your feelings totally. I have kept my mum living at home with dementia for 8 years. It has been difficult and had a huge affect on my own personal family life. Unfortunately, if you are just one year into this, things will not change. The way you describe your life now has been my life for the last 8 years. You will continue to avert disaster, get phone calls and make mad dashes in the middle of the night.
I have been fortunate enough to have one carer who has been really kind. On a negative note, most other carers I had found to be only really interested in the money and in fact disgusted to witness many occasions of carers actually using my mum’s mental incapacity to their own benefit eg being paid for one hour and leaving after 15 minutes. I could write a book on the lack of adequate care for people with dementia in the UK. It’s despicable. As in your own situation, I have 2 siblings, both live abroad.
Recently, I have employed a full-time live in carer and think that for the first time in 8 years I may be able to get on with other aspects of my own life (hopefully, it’s not too late).
At the end of the day, it’s a very difficult decision. I hadn’t and still do not want to put my mum into a residential care home. It’s one of those things, it could go either way. The person could get on fine or deteriorate faster. Regarding my own mum, this is a choice I made and looking back I’m happy that I’ve done the best I possibly can for my mum. She has remained happy at home and not experienced significant deterioration over this timeframe. However, it definitely has had an effect on my own family life and maybe my own family should have been considered more. On hindsight I wish I had gone down the route of the full-time live-in carer from day one. Regarding a residential home, it’s a very difficult call. If your mum settled and was happy it could be a good solution. I had taken my mum to a care home for a visit but she was terrified and sobbed, clutching on to me. I can only offer my current and previous experience. At the end of the day, whatever decision you make you shouldn’t beat yourself up. You are in a difficult position and you can only do what you can do, nothing more.