Caring for loved ones suffering with dementia

[Gemini]

I am creating a new thread with posts which are on my day out with my mum thread. They will be better here. Easier to find!

[WeeGranny]

Sadly it's not always easy 'living in their world'. Some days you need the patience of a saint, especially when you have no one around to take the pressure off, if only for a few hours.

[Daisy]

WeeGranny - that is the hardest thing, I'm sure. When my FIL was living in his own reality he and my MIL used to come and stay with us for a couple of weeks every so often, and I'd try to be with Dad as much as possible so she and my mother could go out and give her a break. Much as I loved him, I found it very hard and very frustrating, especially when say, you were trying to do a simple job like get the washing in and he would panic because he didn't know where mum was. To this day, I don't know how MIL managed. It's so sad.

[WeeGranny]

Daisy, it was the feelings of guilt that got me. I'm still asking myself whether I could have done things differently almost 9 months after OH's death. As there was no medical experts around to advise me, I just had to do what I thought was best. Websites are all very well, but as they kept pointing out, not all forms of dementia present in the same way, so what works for one person might not work for another. A case of trial and error on the carer's part! It is the cruellest of illnesses not only for the patient but for those around.

[Clover]

WG I know only too well what you feel like. Though it’s over two years since I lost G to Alzheimer’s the guilty feeling still comes over me from time to time. Did I do all I could have, did I do the right thing etc.etc..? I agree totally it is the cruellest of illnesses.

[Gemini]

My heart goes out to anyone caring full time for a loved one with any form of dementia.

I am very aware that my couple of hours a week visiting mum and the occasional day out are nothing compared to full time care.

Even the carers, who do a wonderful job and are not paid nearly enough can go home at the end of shift, and have the option to change jobs.
It takes an awful lot to care for your loved one when this happens, and none of you who have done this have anything to recriminate yourselves for.

I agree, a very cruel disease, and sadly the one my mum dreaded.

[Nanto2girls]

Fortunately i've not had to care for anyone with dementia,and i hope i never have to.
I also agree,it is a very cruel illness.

[Daisy]

It is such a cruel illness and is totally indiscriminate.

WeeGranny and Clover - whatever you did you did from love and caring as best you could for someone with an uncharted and unpredictable illness. I suppose it's hard not to look back and think should you have done anything differently, but honestly, you did what you thought was best at the time, and on-one can do more than that.

OH's oldest brother is suffering from vascular dementia, and his illness progressed very quickly to the point where he was hospitalised and eventually went into a specialist care home. My sister-in-law was determined to care for him at home, but it physically became impossible. It broke her heart to have to agree to him being admitted to hospital though. We are all only human and as you say, there is very little help and guidance.

Gem - I agree. Carers do an amazing job and are grossly underpaid.

[Oma]

Like Nanto thankfully not had to care full time for someone with dementia
although last few months of FILs life wasn’t easy
We we’re only the helpers his Mother and sister plus night nurse were there constant
That was bad enough so I take my hat of to anyone caring for dementia sufferers, it’s a damn hard job and I’m sure you lovely ladies did everything humanly possible ,
Dont beat yourselves up about it you did a good job xxx

[grannyjules]

Hi, sorry to hear both Clover and WeeGranny, have lost their husbands to dementia, such a sad way to go and not easy.
I have my Mam living with me, it’s been over two years now. Sha came because she had a mouth problem that took the doctors two years to get under control and sorted. Now she has developed Alzheimer’s and can no longer go home. We’re just at the start of it really, but hey ho we’ll soldier on, together. After a quick break next week.

[Gemini]

I wondered if your mum was still OK or had developed dementia GJ. I am sorry to hear that it is the latter.

My mum has never been officially diagnosed and as the care home manager says, why would we put her through that now?
She has deteriorated a lot.

Enjoy your much earned break GJ.

[Gemini]

A difficult visit to mum today. I never know how it will go, sometimes it is lovely.

Today, after she admired the sweet peas and ate the Solero I took her, it was all pretty negative. Try as I might I couldn't get her off the topic of leaving there, and where she should go next, and what 'they' would say if she said she was leaving?
She can't really make much sense of my answers and forgets anyway so it makes for not so happy visit.

Also the lady in the next room has passed away We didn't tell mum as she only knows her when she sees her so won't miss her.
This lady was 3 years younger than my mum, and although her DD had recently told me she had early stages of dementia she always seems very 'with it' to me. I have had lot of chats with her, and will miss seeing her as I pass her door and hearing Countdown coming from her room at loud volume!

[Nanto2girls]

Oh Gem, sorry to hear you didn't have a good visit today.

[Plantaholic]

Gemini, you must come out feeling very sad and frustrated when your mother isn’t up to having a chat and is troubled. My mother was in a care home for the last years of her life, my sisters tried to look after her but it became impossible. When I went to see her, she was quite a distance away, I always came out crying, I felt it was unfair.

[Daisy]

Gem, it must be so hard when visits are like that. Do you think she picked some 'vibe' about the lady next door passing away and it's played on her mind in some way? On the other hand, it's probably impossible to tell what she is actually thinking. I hope she has calmed down and relaxed a bit after your visit. xxx