care

Ruthy

Registered User
Dec 26, 2003
8
0
Hello eveyone. I lurk here sometimes and I posted a newbie message at Christmas when my mum was diagnosed with Alzheimers Disease. I have to smile when I saw the letter I posted then, as my greatest problem seemed to be with mum waking us up at 8am at weekends. My, little did I know..........

Since then things have worsened rapidly. My mum is 93 and lives with me. She is increasingly hostileand verbally aggressive to me and my partner who shares the caring. Mum is sad and depressed most of the time and does not know what is happening to her. She also has little sight left and she is becoming cut off from her surroundingsWe have come to the end of our coping abilities and I decided yesterday that I would have to find a way to have my mum cared for elsewhere.
Today has been spent talking to the 'Caring' professionals and trying to sort out some emergency respite for us before we break down completely.

I won't bore you with the details of my dealings with the social worker and the GP involved but it was traumatic. Silly really to think that anyone would get their act sorted on a Friday.

Of course I feel like I am betraying my Mother by planning this and looking at her tonight, she is acting wery'normally' and you would not know anything is wrong. I think of her out of her own room, away from her TV and without her own duvet and most of all in an unfamiliar place away from us and it is breaking my heart.

I have to remember that she has driven me and my partner to distraction and will do this again. Right now it does not help.

Sinking fast, Ruth.
 

Geraldine

Registered User
Oct 17, 2003
143
0
Nottingham
Dear Ruthie

Sorry to hear you are going through such a hard time. I had similar problems with my Mum last summer after living with us for 8 years and gradual problems with Parkinson's and Dementia, she went down hill rapidly. To cut a long story short I nealry had a breakdown on holiday and Mum ended up in a Devon hospital. I swear they thought we were granny dumping! She transferedback to a local hospital 2 days later and from there went to an EMI Nursing home a month later. I started to get some sleep after 9 months of getting up several times a night. I could not believe the speed at which she had gone downhill, I had mentally given myself 6 months to a year before I needed to look at care but when it happened so quickly, friends GP, professionals all said they did not know how I carried on for so long. The trauma at the time was awful with feelings ranging from relief to utter despair. Like many I wish I had found this site earlier.

Good luck in finding the right care for your Mum

Geraldine
 

Ruthy

Registered User
Dec 26, 2003
8
0
care.

Thanks for your reply Geraldine.
I am sorry you had such a hard time with your mum. It is one of the hardest things I have ever had to face.
I mentioned to mum today about her going into hospital to " get some help with her memory" and now she says that I am putting her in a home and my Father would turn in his grave and she would never have had a daughter if she had known, & etc..........
Pretty accurate really.
It has been a great help knowing people have gone through and are going through this same experience. Not that I want anyone else to be suffering, but I don't feel so isolated now. I know there is no easy way through this. I just have to do what I think is right. I just can no longer carry on this way.
My next task on Monday is to see what accomodation is available and if a nursing home is the best option for Mum in view of her deteriorating physical condition. I don't know about funding either, so that is also an issue. Mum has little money saved and she is on Income Support. I feel like I am being turned inside out emotionally and the sense of betrayal is overwhelming.
Ruth.
 

emscub

Registered User
Dec 5, 2003
124
0
Bath
Hi Ruthy,

We are having similar problems in my house at the moment, with my Nan going downhill and my parents trying to decide what to do for the best. We are lucky though in the respect that my Nan is still very amiable.

I (and my Mum) have spent a long time feeling as though we're selfish for wanting to get help with my Nan, but the other day (by accident) I found a book called 'The Selfish Pig's Guide to Caring'which I thought sounded perfect for me! It might not be everyone's cup of tea as it is very matter of fact and quite humourous with the subject, but it has really helped me to see that we aren't so bad after all - just normal. The book (unlike most others) is entirely about you as a carer, and although it doesn't focus on dementia specifically, I have found the advice invaluable.

You really must look after yourself, and if you feel that you cannot continue as you are, it is in everyone's best interests if you seek help.

Hope this helps, if just a little.

xx
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
As everyone agrees, it is the most difficult of a host of difficult things to take the step that means "this loved one will never step inside their own home again".

I finally felt comfortable when:

1) I saw very quickly that the home was far better equipped to care for my wife than I was.

2) I visited late one night in January and Jan was asleep in the special bed we had obtained for her last year [before which she had rarely slept except through pure exhaustion], and saw her fast asleep, at peace and looking absolutely normal and as if she would open her eyes at any moment, look at me and say "Hello Bruce, I'm starved, bring me a cup of tea and a Welshcake, will you, love?".

Please don't sink! You have a partner to help you - I didn't, and for a time sinking was a definite possibility. [the challenge of Early Onset is that the person you would automatically turn to for support is the one who most needs it, and there may be no-one else to turn to]

Now I have a new partner and a new life that still embraces Jan's needs fully, so I'm through the worst. Better than that, for the first time in years, I can look forward without a feeling of impending doom!

A final thought - never believe anyone who says to you "I know just how you feel", or "I understand" who has not been in a similar situation. You can't learn any of this from books, though you can very importantly learn from the experience of others who have been there. Even at this late stage, I've just this moment ordered "The Selfish Pig's Guide to Caring" - thanks Emma!
 

emscub

Registered User
Dec 5, 2003
124
0
Bath
Only hope it helps Brucie. I'd recommend it to anyone.

The other good thing about the book that I forgot to mention is that the author is a carer himself, and so the difficult topics he covers are fully understood by him. He covers issues that are usually not even mentioned on this site, and brings them to the forefront, which can only serve to make those who care feel a little easier with their feelings.

xx
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
The Selfish Pig's Guide to Caring

Thanks to Emma I ordered from Amazon, and received "The Selfish Pig's Guide to Caring" today.

I haven't had time to do more than simply skim the pages but it looks remarkable. Every page I open has something that is relevant. It addresses and comments on so many of the things I thought were peculiar to me.

I have already recommended it to the manager of Jan's home, as a guide for her staff.
 

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