Caring for a parent or loved one with Dementia

For the past two + years myself & hubby have been caring for my Mum at our home I got all essential equipment required including strait lift so covered the practical aspects. After nursing people with all types/aspects of mental impairment I was positive we'd be a.o.k. however recently the pressure is starting to tell on me, she has had respite care in the past now though she is in danger of falling every time she has to mobilize I'm extremely reluctant to risk having a holiday, I'm fully aware of the stress on care staff & mum is beyond understanding that she might have to wait for assistance especially when it involves going to the bathroom. I do know that things could be far worse she isn't distressed and sleeps fairly well now with medication thanks to an understanding GP. She does call/shout for nurses all day long sometimes you'd think it was a real emergency usually it's nothing at all which can be very frustrating. We never go out anywhere together as mum can't be left & the cost for day care is appalling. Residential fees are extortionate (done that) ! I expect things to get easier from Spring time longer brighter warmer days. My thoughts & Prayers go to all other carers, Bless you all.

Hello Suzy,
What a remarkable woman you are. I take my hat off to you.
Your care and love for your parents is more than admirable, but I would advise giving yourself a little time too. You must be running on empty some days. Occasionally, it might be good to let someone else take the strain. I’m thinking of respite care, where your loved ones might have a few hours safely watched over, to allow you time and space for important self care, such as doctor’s appointments or a trip to the hairdresser.
I’ll be thinking about you and remember you in my prayers.
Dani.

My father is 88 and was diagnosed with Alzheimer's about 7 years ago. I've been taking care of him and my 89 year old mother who was diagnosed with lymphoma about 5 years ago. In December my brother died of what is called a pons stroke and was buried a week before Christmas. I was also taking care of my sister until she died last month (August) with a rare form of cancer called mycosis fungoides. After my brother died, there was a notable increase in my father's Alzheimer's as well as my mother's health. After my sister died both of my parents have gotten even worse. My mother is under Home Hospice now which is a great relief for me because when mama had a doctor appointment I would have to convince my daddy to go with us because he can't be left alone. Twice a week now nurses come out to check my mother's vital signs and make any medicine adjustments needed, including to keep her out of pain. It's no longer necessary to take her to the doctor because Hospice has their own doctor on call.

Other than the obvious stress in going through all these things, I have a fear that goes through my head almost daily. If my mother were to get worse the next step would be to put her in the hospital under Hospice care which means she would be given her standard meds as well as much stronger pain meds to keep her out of pain until she passes. My mother was in the hospital at the same time my sister was in ICU (Intensive Care Unit). Over the years daddy has always stayed with my mother when she was in the hospital but the nurses said I couldn't leave him there unattended. I completely understand their liability issues but I had a hard time convincing him to leave mama there alone. He couldn't understand it. When mama takes a nap daddy is constantly walking in to check on her, sometimes waking her to see if she wants something to eat or drink of needs anything. In taking care of both of them it is getting almost impossible to deal with situations where they are away from each other. My fear is that, with mama getting worse and daddy getting harder to control, I'm afraid that if my mother passes that my father will become impossible to handle and will have to be put into a home for Alzheimer's patients. Or he won't be far behind her because it would just be too much for him.

When I have a doctor appointment I no longer feel comfortable leaving them home alone so I call one of my nieces or nephews to 'drop in' on them. My mother has also been diagnosed with Alzheimer's and she has a hard time dealing with daddy because she can't understand what he is trying to say sometime. I sometimes wonder if the year will end with me losing not only my only brother and my only sister but also losing one or both of my parents.

Sorry if this is too lengthy but I do feel a little better just sharing my fears.

Good afternoon , I have a elderly aunty with dementia , shes in a care home now , for rhe last few years , over rhe time , I have sen a lot of changes , in trying to show people I understand I wrote a few poems about it .

Patricia

I am new to this site, I am finding it difficult to find live in carers that don't cost the earth!. I have one at the moment through an agency, this was an emergency act on discharge from hospital. Does anyone know of private carers to live in or can suggest any information about this. The person concerned lives in Essex. Thankyou.

I am a full time carer for my partner who is fifteen years my senior, has early stage dementia and has suffered a major stroke that has left him helpless, apart from the use of his left eye and left hand. As he has no property and has been living in my house I had no choice but to take responsibility for him as the residential care offered by social services was the most basic care home. Our families all live far away and have their own lives and difficulties. Is there anyone out there in a similar situation? It would be good to be able to talk over our experiences and ways of coping, both practically and emotionally.

Dementia is such a cruel disease. My 85 year old father has it and is gradually becoming a shadow of himself. My mother is his carer and does exceptionally well, even although she has her own health problems and now has a pacemaker. My father suffers from "sundowning syndrome" and my mother no longer is able to take interest in tv in the evenings as my father goes on and on about having to go home and that his wife will be wondering where he is. I just wish to god that he won't get to the stage where he has to go into a care home, but worry about my mum, also ...................:-(

We are just going through the stage of getting a home for my mother-in-law. The biggest problem we had looking after her at home was that my husband and I are both getting old and it takes us all out time to look after ourselves. She has been losing her memory for the last year and kept forgetting to eat etc.

My m-i-l is 100yrs old and lived at home until she was taken into hospital a few weeks ago with a water infection. It was the social services who made the decision she needed to go into a home where she could get 24hr help if needed. We were grateful we didn't have to make the choice, so we do not feel too guilty.

Try to get this person on a vitamin program or at least a good one a day. This is to try to keep him as healthy as possible.

Please contact your local office of the Alzheimer's Society, you can find details on www.alzheimers.org.uk. You can also find information on what services are locally available and factsheets covering a variety of situations you may come across including looking for homes and feelings of guilt.
The Alzheimer's society has Dementia Support Workers who support carers with their caring role. This includes helping to access the correct information and signposting.
Please don't feel that you are on your own.

Thank you Gilly, can't help feeling guilty but like you I work full time too. Such a difficult time ahead 🙁

Yes, had to find home for my mother suffering from early stages of dementia. Looked at loads, considered that if it was somewhere I would be happy to live in, then fine, if not, look elsewhere. Also dismissed straight away any that smelt of urine. Found one and she has been there for 18 months. Dementia has got worse, but she is well looked after, and can't think of anywhere that would be better. Expensive, as self funding, but then what's the alternative! I work and other family live abroad. Difficult time and good luck

Does anyone have any experience of care homes from parents suffering from dementia?