my story

[Janina]

Mum came to live with us in March 2001 - we spent £1000's on a granny flat. We didn't know anything was wrong - Mum was saying some odd things but we put it down to moving out of the family home. Anyway - it was all a disaster - I had 3 children aged 13/11/9 and a saintly husband. I worked part time. Mum became more and more difficult and demanding and I lost my patience with her so many times.
Eventually Community Psychiatric Nurses came (I was at breaking point and my children were at a loss). The CMPs said she just needed more company - Mum refused to go to day centres - couldn't make decisions about anything. I tentatively suggested to my sisters that if they had Mum to stay for one weekend a month, me and my family could at least have some time together. They didn't offer. My husband's health was beginning to suffer - I tried to find respite care - nothing doing. Finally on Friday 13th June 2003, I tricked Mum into entering a care home. I went on holiday with family and hubby had a heart attack ! (He's fine now). Mum hasn't been diagnosed Alzheimer's but her dementia is worsening. It's heart-breaking to see her constant confusion and anxiety. It's even worse somehow because when she sees me, I get the feeling she believes I will somehow sort it all out.
She settled into the care-home but was moved to an assessment centre recently because (apparently) she became cross and violent with staff. She is now in an unfamiliar environment and her confusion and despair has rocketed. She asks me if she can come home with me and it takes all my strength to walk away - I feel I should put my life on hold to look after her - but it wouldn't be fair to the kids - would it ? Sorry for going on - no-one understands how I feel and I'm constantly trying to put a brave face on things.

 

[Chris]

Hello Janina

You will receive losts of support from this Forum so please keep looking in .

Im so sorry to hear your story - am replying as didnt want you to think people had read your post & not replied.

My Mum moved homes several times for a variety of reasons and it always takes time to get used to the new place. I'm at the end of the journey now as Mum passed away a week ago after 14 years or more with vascular dementia. I'll look back at this thread & hopefully be able to share experiences that may help.

First - do you know where your local branch of the Alzheimer's Society is ? the main website www.alzheimers.org.uk has them listed under 'Your local branch' in the yellow panel. They may have people who can help & support you in addition to this Forum.

 

[barraf]

Dear Janina

Welcome to Talking Point.

I am so sorry to hear of your problems, you must feel that the weight of the world is on your shoulders.

Get in touch with your local branch of the Alzheimer's Society immediately, they deal with all sorts of dementia not only Alzheimer's.

You don't say whether your mum has seen a specialist or not, if she has you should try to have a word with him/her. Write down all the questions you want answering before you go. If she hasn't seen a specialist get on to her GP.

Information is the key to getting the best deal for both carer and caree.

I would think long and hard before taking on the job of sole carer and having your mum back home, even with her own granny flat.

As for the your siblings I'm afraid you will find that the one who takes on the caring is left to get on with it as best they can. This is a constant theme of almost all the carers who contribute to this forum.

The people on talking point certainly understand what you are going through, as most of us have had or are having similar problems.

Don't hesitate to post with any fears or worries or even just to let off steam.

I am sure you will get many more replies and will be able to use some of the advice to get help.

Good luck

Barraf

 

[Chesca]

Dear Janina

Nobody understands how you feel?..........rest assured that on this site you will find many a soulmate. Unless they have experience of caring for somebody with AD they can have no idea of the emotional upheaval, guilt, stress and general mayhem it involves.

The brutal truth is that the only way you could hope to manage at home is if there was constant nursing care, which comes at a very high price always supposing you can arrange it in the first place, this in itself can become a massive task. You probably know this already from talking to the CPN or social worker, but if not you need to arrange to meet to discuss all the options open to you. Finding suitable people whom you can trust to care for Mum in the way you want, when you are away from home getting on with the normal business of life can take a lot......Forget the rest of Mum's family where help is concerned. The minute you took on the responsibility they got lucky. Cynical but true. It's invariably the case.

Don't be alarmed by the aggression, it is all part and parcel of the evil beast that is AD. And bear in mind, when people tell you Mum is aggressive, that SHE isn't, the illness is manifesting itself so. The assessment should provide for some anti-psychotic medication to help calm Mum following which she may be accepted by an EMI nursing home, one specifically staffed to care for AD sufferers - a normal nursing home is not so equipped. Give this treatment time and you may see that Mum becomes calmer and more settled which in itself will be of a great benefit to you; you may feel more comfortable about her living in the nursing home if she is at some level of peace. And don't forget it's not a prison, you can take Mum out for days if she is well enough.

Then there is the call for 'home'. Every sufferer appears to go through this, it starts in the afternoon and is called sundowning. However, the 'home' you think Mum is referring to is not the one of your making - it's her childhood home. My father used to spend best part of his afternoons running up and down to my grandmother's house because Mum wanted to go home to her mother (died 1967). No sooner would she arrive outside the house that she would ask what she was doing there, and no sooner would she return to her and Dad's house and she would want to go 'home' again. I toyed with the idea of buying them a touring caravan - it might have been easier! I jest.

The only ones who can make the decisions are you and your immediate family but you have to make them in the best interests of everyone. Try not to make a decision based on guilt, hard though that is, it will grow into resentment which is so destructive. That is not to say you won't feel guilt, it's always there no matter what you do. I try to not let it rule my life, not always with success. Seems to me you are doing the best for Mum with love, and you can't expect more than that of yourself.

thinking of you
Best wishes
Chesca

 

[Chesca]

Dear Chris

So sorry to hear of the sad loss of your dear Mum.

Have sent you a PM.

Thinking of you
Chesca

 

[karen_white]

Hello Joan
So sorry to hear about your story. YOu wil receive an anbundance of support here at TP. It has been of great help to me and my family and I only wish I had found it when dad was in the early stages.

You say "Mum hasn't been diagnosed Alzheimer's but her dementia is worsening."

I think it would be a first step get your mum diagnosed. There may be some medication that can help your mum. I know when dad was diagnosed and prescribed meds, even though we hated it, it did make dad happier and easier at times to interact with.

What you have gone through must be an emotional rollarcoaster, but try and take comfort in the fact that your health may have deteriorated if you still had your mum at home and your mum wouldn't have wanted that. She is being looked after in the best possible place outside your family.

My thoughts are with you and your family at this hard time.

regards
Karen

 

[Sheila]

Dear Janina, sorry to hear about your problems with your Mum, the others (as usual) are right in the advice they give and by saying you will get support here for you and your feelings. I can only agree with them, don't beat yourself up over this, it is the illness not your Mum that is the problem. It is one of the hardest illnesses to cope with as far as I'm concerned. You are visiting regularly and showing you love her, it is all you can do. It would completely take over your life if you took her home and with three young children it would not be long before you were in a state of collapse. She is having an assessment soon, this will help you to find the right home for her, hopefully once this is done she will settle and you will feel more at ease with the situation. Love She. XX

 

[Sheila]

Dear Chris, so sorry to hear your Mum has passed on, it's a difficult time for you, but take heart in knowing that she is at peace now. Thinking of you, with love, She. XX