I'm tired and emotional.....

Thank you again for all your thoughtful and helpful posts. I am a little calmer today and I am beginning to see the road ahead.
Indeed, I do have a few months before I need to kick 'a**' and in the meantime we need to gather knowledge that will help us to move forward. There are 30 people in the VSH scheme - many of whom need 24/7 care. I guess the first thing we do is lobby the council with the needs and expectations of these people. The scheme can no longer be referred to as a Very Sheltered Housing scheme if they don't provide 24 hour cover...... and if some of the residents need full time care in a nursing home etc...the costs could be much higher than providing the 24/7 care they have been used to.

I have to say I feel a chill go through me when I think of my 'old age' (although at 64 there are many who would say I am already there!) I plan to be ready - ready as I can be - I never want to get to the stage where I need others to make decisions for me - I am in the throes of doing just that now - my kids can hardly deal with their own lives (both personal and working) I do not want to add to that burden.

All of your advice is taken on board regarding my mum and is filed in my brain for future use....
Thank you all so very much xxxxx

Have been down this road with MIL .Started out as multiple infarct dementia and then she developed Alzheimer's as well (they present slightly differently) .She had to go into care after a fall (the last of many-we worried about her living iindependently though we were only a ten minute drive away )tipped her over into full blown dementia.Had it been only physical fraility she would have had to have been dragged kicking and screaming, so ironically the dementia made it easier .She was 91 though and lived for two further years
I too nearly chose a "posh'home as she was a terrible snob but eventually went with gut feeling for somewhere much more homely The care was exemplary
The worst bit for me was when she seemed to withdraw completely from the world .For the last year of her life she said only 'please' and 'thank you '.And she recognised no one.I made my children (her only grandchildren) stop visiting as it was so upsetting .
You have my sympathy .Had it been my own mother it would have been unbearable. .DH has a terrible fear of dementia and found it hard to visit (they were not close) so I was the one who tried to be 'there'for her So hard .

No help just sympathy, as you said things should have been easier now. We should hope for the best and expect the worst.

Me too, jg, I think maggie is right, if you can concentrate on making today as good as it can be that might help, but of course easier said than done. Take good care of yourself with the travelling.

And from me. Try not to worry too much about what will or might happen in December, jg. There are always so many twists and turns, tos and fros, argies and bargies with committees and public bodies that all the plans currently being discussed might well come to nothing. Let's hope so, anyway.

I know it's so hard, but try just to concentrate on the here and now, and carry on as you are doing so ably, supporting your mother to settle into her new environment.

((((hugs)))) from me too

Its sad really, that the way to end ones life with dignity is not allowed. I hope this helps.

jg, what a worry for you. (((hugs)))

It took my mum a fair while to settle into the first home we found but we realised quite quickly that it wasn't exactly right for her. If you have followed my posts about my mum, you will know she is a real snob and we convinced her to go into that particular home because it was brand new and looked like a hotel.

With hindsight we should have picked a home which offered much more care and, when we did, mum was much happier.

Have you been given a list of homes that are registered for dementia patients? We found that lots of homes which would cope with residents who got dementia while they are living there it was better for mum when she went into a home specifically for dementia patients.

It's a sad fact that deterioration happens faster than families would like and it is a good idea to look at homes that can look after your mum as the dementia worsens.

I hope the above makes sense. Pm me if it doesn't. I'm only on my first cup of tea.

deep breath, shoulders back,head up and a big fat ((((((hug))))) because I just can't think of anything to help make things better.

Just when I thought it couldn't get more difficult .......

A meeting today at the VSH scheme that my mum has just entered ... the news is that the care company who provide 24/7 care are pulling out in December. Their contract with the local council will terminate on the 15th of that month. The local council are suggesting that full time cover is replaced with domiciliary care which is NOT 24/7....

The deciding factor for this move for my mum was the 24/7 care....
After just 4 days in her new home (and she is struggling) I am now having to think 5 months ahead and the worry and the stress begins all over again.....

I have a very heavy heart tonight ?

I do think that is one reason we are sent GC, (if you are lucky enough to see them) to balance dealing with the older generation. It brings back the innocence of life, the charm and loveliness of the young.

It was very overwhelming to have my dad have dementia. Apart from some one here, I was lost at sea with it all, no support from the NHS or anyone in the health care community. I had no idea what would happen, how he would react to things, how his temper would be, anything. He demanded his finances back in his control at Christmas last year, and even though he was an adult, he was behaving like a child, kept cancelling his cards every week etc. But I still had no choice but to let him do his own thing. I can understand that it must feel confusing in more lucid moments when he maybe felt like he was being taken over, but that wasn't my intention at all, just to care and make sure he was being treated right off everyone. There were benefits he could have applied for , DLA for one, as he was terminal, but no one tells you these things until it was too late.

jogging and morethan Would it not make it easier to move your mother and MIL to somewhere nearer to you now? They don't know really where they are and you are both travelling for a good while to go and see them. Maybe it would be easier on you both to find somewhere nearer and then you can get more rest yourselves. I moved my dad to a care home near me, it made it easier on me to be nearer for any emergency. When you are travelling each way for an hour and then visiting, it can be really draining and driving while so tired out isn't good for anyone. Part of all this is making sure that you are looked after too. Are either of you in touch with any dementia society? Or are you being left to just get on with it, like I was?

My heart and thoughts go out to you, it is incredibly difficult to go through this dreadful disease. Me and my dad did it with humour and I hope, still some dignity. He died with cancer in March, thankfully the dementia had not got really bad, which is the only thing I have to be thankful for. But up to then he would get frustrated, tell me he keeps forgetting things and be sad about it. I used to play it down and say that I do that too and then tell him a funny story to cover it up. It's no wonder my DS is going kicking and screaming into adulthood when there is all this responsibility to deal with as a grown up. Take care, all of you. Xxx

That brought a smile to my face morethan - thank you. You are right - the simple pleasures certainly lift your spirits - I'm away to DG's room right now ?? xxx

jogginggirl you and your mother have my sympathy, I've been on a similar journey
Just to echo what silverlining said about music, here's a link to a charity started by Sally Magnusson, after she found that music was the only thing that helped her mother.
Hope it helps you a little too, I wish I'd known about it for my mum.
www.playlistforlife.org.uk/#2946
www.bbc.com/news/uk-scotland-north-east-orkney-shetland-33787628

Night night jogginggirl nip into your granddaughters room and watch her sleep for a few moments it'll lift your spirits a little and hopefully you'll get a fairly decent nights sleep.

Thank you all so much for your words of wisdom and sound advice ❤️ I would like to respond to each of you individually but I can't - still many thanks for your input.

I know it has only been a few days but mum is finding it terribly hard to settle. She is leaving her flat often and cannot find her way back - even wandering into someone else's flat the other night! The care team are wonderful and are doing their utmost to help her feel comfortable.

I don't know whether others have experienced this complete and utter bewilderment which becomes so overwhelming that the affected person (my mum) cannot take in even the simplest information. We talked often about this move before it was made and visited the flat probably half a dozen times. Mum was included and made her choices - but of course she then forgot ?

I have been each day (I live about an hour away). Today I met with the care supervisor who advised me that mum needs more care than we first thought - this may be down to her utter confusion or a progression of the dementia - who knows...? I'm pretty sure I have made the right decision to move her but it doesn't make it any easier - I do feel that she needs more care and certainly overnight.... my big fear is that where she is now - they will decide that her care needs are more than they can deal with and I will have to move her again....?

I really don't think I am making good choices/decisions at this time because I am tired, (exhausted) and overwhelmed by the responsibility of it all. Tonight I have my 8-year-old g/d staying and she is a delight and has forced me to think outside the box (she's a wise old girl). Tomorrow I will start again with my mum but tonight my g/d is exactly what I need.....

I send my heartfelt thanks to you all - it's reassuring to know that there are others out there dealing with the same issues. I wish you all well with your individual tasks and I will certainly be posting on here regularly.

Night night xxxx ❤️

for you all. My MiL is in the same position so I recognise some of the things you've all said. My heart goes out to you all. I feel I'm neglecting my MiL but I'm torn between her (200miles away) and my terminally ill DiL who has young children. Mum and I are very close. She has confided in me a lot over the years and now she keeps asking for me. Before she became very confused she told me she enjoyed being in my home more than anyone else's. I wished I'd known that at the time. We were the 'poor' relations and I always felt a bit of a failure that we couldn't spoil her as much as others. She was a much better MiL than she was a mother. She still drove me to distraction at times. She always wanted her own way, she was determined and cantankerous. My daughter once described her as eccentric and she's right. She's escaped two or three times from the home (I wasn't surprised,I can read her like a book) but more worrying is she attacked the staff with her stick and they've called the police.! I'm worried they are doing that so they can document her behaviour so they can move her to a more secure unit. She behaving in this way because she's angry. She's stuck in this awful room they won't let her in the garden it's worse than prison. She's so unhappy. I feel it was her very frail state of health and not the dementia that prevents her living alone. The family are continually running too and fro and being called to meetings. How will it end? It's just so sad and we all feel so helpless

Sincere apologies jogginggirl for taking over your thread, but it's nice to share our experiences.

Ann, you are maybe going to have to be strong and make dh accept help!

I would but he just doesn't think he needs any help at all, he even says he will be fine on his own when I go for my TKR!!!
He thinks apart from having no memory at all, which he accepts , he has no problems.

Annsixty would you consider DH going into a nursing home for 5-7 days once in a while so you can have a short holiday? It would do you good to recharge your batteries.

kitty's right, very sensible post.
I do hope you can organise some help and have an occasional break annsixty.

Oh, ann, maybe you should think about organising more time for you and your own life now. It's important that you keep things going for you. Your situation is so sad from all points of view. Please get more help. You've said that your Dh has said he doesn't need any help but you do and it's not all about him.

It must be a strain, which will take a toll on your health which is not good.

Thank you both, for myself I have adjusted and now, just deal with it but I have to admit very honestly at one time I thought there might be a life beyond this . That must sound dreadful and uncaring but realistic for me. However I now face the fact that H could outlive me, he is so fit and well and now I am not.

I'm full of admiration for anyone managing this horrible illness. Sending hugs and a wish for a day without worry.