Hello, I'm new to the Talking Point

[Tig]

I have registered with this forum in the hope that I can meet with people who are trying to cope with a relative with Alzheimer's.

My mum has just been diagnosed; although it has been apparent for some time that this only needed confirmation. This is a very difficult thing to cope with, as I am sure many of you are also experiencing - you just wish you could just make everything right again. My mum and I have never really experienced a mother/daughter relationship, I was the oldest and had two brothers who were far more dependent on her - so bit of a black sheep really as I went out into the world and did my own thing. My mums life has never been easy on an emotional level and I think she enjoyed the dependency of my brothers; sadly the youngest died a few years ago as the result of an accident aged 22.

My other brother now lives several miles away and is not a regular visitor, so I have been trying to manage this myself but I am finding this increasingly difficult. To make matters worse her husband (my stepfather) has been in hospital for the past 6 weeks and it looks unlikely that he will be going home as my mum is basically not fit to look after him.

My mum now has a case worker through the community mental health team and hopefully this is going to help a little. I was able to visit her twice a week, as she lives about an hour away but I have just started a new job, which is not only demanding but needed after being made redundant about a year ago - so this has been reduced to one day. The guilt I feel is unbelievable but I can't spend any more time with her and after the time that I do I am emotionally and physically shattered.

I say that my mum now has a case worker; she actually has had for just over a month - it is just that things are starting to move on a little now. I have been trying to get someone to spend some time with her (they mentioned that this was a service they offered) and get her into day care (which they thought she needed as she had no mental stimulation at all) - and I'm still waiting for something to actually happen! I have a meeting with the case worker tomorrow as I eventually expressed my anger - I was continually being told that she needed socialisation and stimulation and what the service could offer - what has actually happened is that apart from the time I have spent with her she has basically seen no-one else!

There is also a problem in that she will not move out of her house - its hers, paid for and she's not going anywhere! Life would be so much simpler if we could move her into sheltered housing, she would be probably be much safer - and her husband would probably be able to get home (the layout of their house is not particularly suited to a person who is not steady on their feet/needs a zimmer, as he does) - but stubbornness prevails - I do however fully understand her need for familiarity/security and why she would not want to move out of the house.

I hope I have not come across as a moaning Minnie in this, my first post! I am just finding it a little difficult to cope just right now and I thought if I included some of the background I'd be providing a more rounded picture.

I would appreciate hearing from anyone. Thanks for reading my post. Take care.

Tig

 

[DeborahBlythe]

I hope I have not come across as a moaning Minnie in this, my first post! I am just finding it a little difficult to cope just right now and I thought if I included some of the background I'd be providing a more rounded picture.

I would appreciate hearing from anyone. Thanks for reading my post. Take care.

Tig

Hello Tig, welcome to TP. You are certainly not a moaning Minnie. You have come to the right place and your problems are very similar to many other people who post here. You are trying to do the best for your mum and understandably finding it hard going as many people on this site do, myself very much included. You are at the edge of a very complicated web, trying to sort out some challenging care issues, at a distance, juggling your working and home life, and with added complications of uncertainty about your step dad's situation. For goodness sake don't apologise or think that you are somehow trespassing on anyone's good will here. We are keen to help as you'll soon see.

In a nutshell. Push them on the day care, push them on the stimulation. But above all, make sure they know about your step dad's situation and get them to do a full Community Care Assessment of your mum's needs taking into account your stepdad's impairments. See the AS factsheets for this. http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htmmeon Someone at the hospital should be fighting to get the right adaptations in place to allow your step dad to return home and sorting out a care package for him. I don't understand why this discharge process hasn't been started. Any chance you can get the Social Worker to look into this further, or that you could contact the PALs officer at the hospital to report back on what discharge plans have been made?

It is not just about mental stimulation, it is also about her safety, her mobility, her physical needs and personal care needs. Does she need assistance at night? If you have time, I would ring the AS helpline in the morning for some advice about benefits, Attendance Allowance etc.

Sheltered housing may sound like a good step at the moment but dementia doesn't tend to improve. Things tend to go downhill sooner or later and sadly it may be that your mum deteriorates faster than the sheltered housing set up can accommodate. Best to try and arrange as few moves as possible. For the time being I'd try to get as much help as you can wring out of Social Services, to allow your mum to stay where she is, emphasising and if necessary over-emphasising your mum's vulnerability and any deterioration in her ability to understand.

If the assessment is that your mum cannot stay at home under any circumstances, they will want to try and place her in care, I guess, which is another set of issues to think about. In the long run it might be more of a relief for you if your mum went into residential care, especially if the home was closer to you, however at this stage I'd still be pressing for a full care package to allow her to stay put in her own home and something tailored for your step dad too. ( Does he have any useful relatives you can discuss things with?)
Kind regards Deborah

 

[CHESS]

Hi, Tig,

Welcome to TP! Just to let you know you will NOT be thought of as a Moaning Minnie. I have to say that, although I have been a member of TP for a couple of years, this is my first post. I read other people's posts and think I am so very lucky. Yes, my Mum is probably in stage 6 of Alzheimer's (I had only heard of 3 before reading this forum!), and I do encounter problems. In my favour, I live with my Mum, I don't have work to worry about, or other dependants (apart from my dog, who is an absolute Godsend!) and I have always enjoyed an extremely close, loving relationship with my Mum.

I can only admire how well you seem to be coping with your Mum in your particular circumstances. I know some other members will come forward with more practical ideas of help for you (they can always be relied upon!!) but just wanted you to know you are not alone. You are amongst friends.

Let us know how you get on.

Chess
x

 

[Taffy]

Hi Tig,
Welcome to TP, you didn't come across at all like a moaning Minnie quite the contrary. Your concerns about the welfare of your mum and step dad are quite valid and Deborah's reply seems very helpful advice. I hope that everything works out well for you. Take Care. Taffy.

 

[DickG]

Hi Tig

Welcome. You are nowhere in the league of Moaning Minnies (or Mickys). This is the place to expess frusration, fears, anxieties etc. Just give it both barrels, we have all been there and understand.

I cannot add to the good advice you have been given.

Dick

 

[Tig]

Thanks

Just a quick thanks to you all for replying to my post, it has meant a lot to me.

A decision has been made that my stepfather will go into residential care, he has too many needs for my mother to be able to cope with him at home; one of these is double incontinence, so not only is he currently having to be toileted every two hours but changed through the night too. This was concluded after a meeting with his case worker, OT and physio. My mum was there but didn't really understand what was going on, as was my sister-in-law (she and my brother have been divorced for a number of years) - but that was a great support for me. My stepfather will be visiting the home on Tuesday and I have requested that my mum goes with him - I think it is important that he feels he is not being cast aside and this is only because my mum cannot cope. I may have been able to press for a fuller care package but I think that this may have been too stressful for my mum who believes that it is her responsibility to look after her husband.

Now that has more or less been decided this has meant that my mum will be living on her own on a permanent basis - will until she deteriorates further and requires more care, then the situation will have to be reassessed. I know that she will have a care worker from the Mental Health Community Services going in for two hours each Thursday and that arrangements are being made for her to attend a daycare unit two/three days a week which specifically caters for people with Alzheimer's - she actually had someone visiting from the unit on Friday to assess her - and had gone out to visit an elderly neighbour!!! Arrangements will also be put in place to enable her to visit her husband on a regular basis. My sister-in-law will also be more involved (time allowing), having attended the meeting and we are trying to get my nieces more involved, even just to sit with granny for a while, even though that is not really what cool teenagers want to do!

Hopefully things are looking up.

I realise that this will only paper over the cracks for a while and that we have a longer road to travel. I also know that it will be hard work, I have just come back having spent the day with my mum and am emotionally and physically exhausted - it was a toss up between a glass of red wine and a cup of tea when I came back and the wine won by a mile!

Thanks again for your support. I will visit this forum often and hopefully will be able to support others in the future from my own experience - although I believe I am still in the early stages of traveling the road through this just right now.

Quick question, if I may - does anyone know where I can find anything out about power of attorney? Should I start another thread to ask the question?


Best wishes.

Tig

 

[Tig]

Power of Attorney

Just a quick footnote to my last post - I found the fact sheet on the AS website so have printed that out to read, I expect that will answer all my questions.

Best wishes.

Tig

 

[Nell]

Dear Tig,
There have been numerous threads about Power of Attorney.

If you go to the first page of the forum and find the menu at the top of the page, you will see a "search" option. That will take you tothreads with POA as their topic.

Be warned though!! It is a bit like opening Pandora's Box!!