What do i do now?

Fodla

Registered User
Jan 1, 2008
1
0
Sunderland
Hi, my mother has Alzheimer's. I recently started working part-time instead of full-time to spend more time with her, and Social Services go in for half an hour morning and night on the days I can't be with her. She can remember who I am less and less and is sure she is not in her own home. Whenever I am there she asks me to take her to her own home. She has lived in her home for over 30 years and I find this heartbreaking. She has now asked me about six times since Christmas to move in with her. I honestly don't know what to do. ~My common sense says not to move in (my job helps me stay sane and I would have to give it up because it would be too far to travel; also I need to sleep at least a couple of nights a week and my mother wanders around the house; she also just roots through things day and night - including my things - and i would have absolutely no privacy or time to myself) but my heart says to be with her. However, her disease is progressing and I worry about what will happen if she goes into a home; her house will need to be sold and I will end up homeless. We live in different local authorities and I have applied for housing in her authority but am not finding them open to this and social services say they don't have any influence in this. I feel that living a short distance away would be a good compromise. How on earth do people whose partners have Alzheimer's cope? Please can anyone give me any tips? And why are carers like myself given no guidelines or help by the local authorities, social services or the like? I feel I am dancing in the dark. Also, when someone sets fire to three electric kettles in a row (we are now onto using a kettle that goes on the gas and a couple of large vacuum flasks) is the social workers answer just getting an isolater fitted to the cooker? I am all for tagging if it would keep her safe, but an isolater fitted to the gas cooker will not stop her putting tea bags and water in her toaster, which she has done. Any suggestions from those more experienced than me?
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Dear Fodla,
Welcome to Talking Point.
Unfortunately, we nearly have all started the same way will little or no information. People will come on line with advice.
As for living with your Mother and you become a 24/7 Carer is so very hard.
Contacting the Social Worker to arrange for more support for your Mother's safety.
Do you actually live in the same house?
Do you have a Local Alzheimer's Branch near you?
There are facts sheets available, The Princess Royal Trust, Crossroads,Helped the Aged and Age Concern.
I wish you all the best. Christine
 

elaineo2

Registered User
Jul 6, 2007
945
0
leigh lancashire
Hi Fodla,
Christines post gives the best advice,there are so many arms that you can reach for with this illness.don't ever be afraid of needing help,its here whenever you need it.
love and the best elainex
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi Fodla and welcome to Talking Point.

I suppose it's no consolation to hear that very few carers get the support and information they deserve when they first set out on this journey. That's one of the reasons for a place like Talking Point.

From what I understand from your post your mother owns her own home but you live in LA accommodation in a different LA to your mother. You are now considering whether it would be wise to move in with your mother, which would also mean you giving up your job as it would be too far for you to travel. Furthermore, you're concerned about whether giving up your own home would leave you homeless in the event that your mother had to go into a residential or nursing home. Dealing with the last point first - it is possible that if you did this the LA would not require the sale of the home. CRAG (Charging for Residential Accommodation Guidelines) indicate that consideration should be given to a family member who has given up their own home in order to care for someone, but it isn't set in stone. If, however, you are yourself over 60, then you retain your right to live in the home should you mother need to be placed in a nursing home.

It's all a bit open ended though. I have to say that while I admire those people who do take on the task of caring for someone 24/7 there is no denying that not everyone is cut out for it (me for a start) and there is no shame in admitting that that might not be the best solution for your own mental health.

I have to say that when someone starts the unsafe behaviour that you describe it may be that the time is coming close for a residential placement. Do not assume that such a placement is giving up - many people have found that such an arrangement allows them to enjoy being with their loved one rather than spending all their time with them dealing with problems, and all their time away worrying, while for the person who is placed, having many other people around obviates the loneliness that can so often occur.
 

Kayla

Registered User
May 14, 2006
621
0
Kent
Dear Fodla,
Living nearer to your mother wouldn't necessarily help the situation that much. My mother only lived a mile or so from my house, in fact it was easy walking distance across the fields, but she still used to get very confused and muddled over the time of day and when to take her medications. Even if several people had been in to see her during the morning, by the time afternoon came round, she thought she hadn't had any visitors all day.

Overnight, Mum forgot how to use her washing machine and thought her carer had damaged it and gradually Mum became less and less able to cope in her own home. She also lost her sense of balance and found steps very difficult to negotiate.

After several falls, she went into a care home in the village where she lived and was very happy. The routine seemed to help her sense of time and her medications were given regularly. Mum had vascular dementia and went downhill quite quickly, in sudden steps. Within a period of about six months or so she went from living safely on her own, with support from a carer, a home help and family, to becoming dependent on 24 hour care and needing help to walk, in case she fell.
Mum later went into a nursing home after breaking her hip and died unexpectedly of a heart attack seven months ago.

I think it would be a mistake for you to drastically change your lifestyle, in order to care 24/7 for your Mum, because her condition could become much worse over a short period of time and then you could be without a job or a home of your own, having perhaps just spent a few months looking after her. I wonder if she would have expected that, if she was able to think clearly?

In a residential home, there are trained staff available 24 hours a day and I admire their patience with the elderly, because I used to find it very hard not to get irritated with my Mum, when she did odd or strange things.

I hope you are able to find a solution to your care problems soon. At times I really felt at the end of my tether, as problems seemed to crop up quicker than my ability to solve them.

Kayla
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
I have to say that when someone starts the unsafe behaviour that you describe it may be that the time is coming close for a residential placement. Do not assume that such a placement is giving up - many people have found that such an arrangement allows them to enjoy being with their loved one rather than spending all their time with them dealing with problems, and all their time away worrying, while for the person who is placed, having many other people around obviates the loneliness that can so often occur.


Hi Fodla, welcome to TP.

I have to say I agree with Jennifer here. I don't think you should give up your job to care for your mum. It sounds as if her dementia is fairly well advanced, and there is no knowing how long you would be able to cope.

By far the best solution in my opinion would be to try to get your mum into a care home near you -- although as your mum owns her home that would have to be sold to fund care, apart from the first 12 week disregard.

As your mum is in a different LA from you, you'd have to negotiate this, but it can be arranged.

I realise there are all sorts of financial implications for you here, but it does sound as if your mum is unsafe to be living on her own, and you have to weigh up the loss of your job and freedom against the cost of a home. Not an easy decision, and one that only you can make.

Sorry, it's an awful decision to have to make, and I don't envy you. But either way don't feel you have let your mum down. You are trying to find the right solution for you both.

Post again if you want to talk it through some more. I know other members have been in a similar situation, and may be able to advise.

Good luck,