General Chat

Anne I am so sorry, how awful for all of you. <3

Feeling for you <3

I can identify with much that is said here as my MIL went into hospital about 8 weeks ago and we then discovered just how bad 94 year old FIL's dementia was, now diagnosed with both Alzheimers and Vascular dementia. He already had carers coming in as he was unsteady and needed some help dressing etc. He'd had a bad memory for years, but then who wouldn't if they had a wife who did everything? He'd started wandering off up the road and was complaining he needed more company a few weeks before. Anyway, after hubby staying with him overnight, he clearly couldn't be left on his own, so hubby found him respite care in a home the next day, despite him always saying he never wanted to go in a home. It was the only way to keep him safe, as he also had osteoporitic fractures and had had several falls. Once he realised he was in a home he got in an awful state, shouting and trying to hit my hubby, which was very upsetting for both of them. Then within a week we had to tell him his wife of 64 years had terminal cancer. Then he was crying and fretting to go home as he thought he should be there caring for her. He thought he was fine and had nothing wrong with him. She's been in and out of hospital. Then he wanted to go to a different care home to be near to her if there was an emergency. Things calmed a little and he started to settle and made a friend of a new resident at the home. Then a 'do gooder' from an organisation thought she knew best and said he should be taken to visit his wife in hospital, people's rights etc (which he hadn't asked to do) and that he should have family photos for his room. We were going to suggest photos to him, but further down the line when he'd had longer to settle. Anyway, despite being dubious about it, we did both things, got him photos and took him to the hospital and the visit seemed to go well. The next day in the home, he was in floods of tears and inconsolable and this carried on for the past few weeks, resulting in 2 falls and a stay in hospital. He was saying he must be moved nearer to his wife and his house, even though we told him she wasn't there now. When OH visited him in hospital he thought he'd been to OH's funeral as well as thinking his wife was dead now and thought he was all alone in the world, poor man. As for the photos, they upset him too, to the extent he was not even wanting to sleep in his room. They've been put face down now and to one side, so he can see them when and if he wants too. Luckily, the last time we went to see him he was happy with his new pal and chatted happily to us about his time in the forces and never even mentioned his wife. It was their anniversary this week, but (probably against what the 'do gooder' would think) we decided not to mention it to him. We aren't even sure whether to tell him when his wife passes away shortly as we know this will trigger more awful upset for him. His dementia is worsening and he has no sense of what time has passed now and the last time he mentioned her we just reassured him she is being well cared for and he seemed happy with that.

I think the important things we have learned is that the dementia can be worse than it appears on the surface, as conversation can be quite sensible, but actually wrong in content if you know the person! As you say you could almost think nothing is wrong! Also symptoms do vary day to day so don't underestimate the need to keep someone safe. FIL got very agitated with the need for company and 'someone to talk to' and didn't like his wife napping in the chair in the evening as he couldn't talk to her, so the demands on your cousin will become very difficult to deal with and she must think of the toll on her own health too. Also I would listen to but not always act on the well meaning advice of others as you know your relation the best. Finally, although we had POA set up for both FIL and MIL years ago, bear in mind that registering it for it to be active has taken 8 weeks, so do it sooner rather than later. It is a very cruel thing to have as you say.

Det. My best friend is a retired social worker and knows my Aunt very well. I have the utmost respect. For the work they do. At this stage we are just trying to respect her wishes. Auntie. actually said herself this morning that she knows she will become worse.

There is absolutely nothing wrong with contacting Social Workers even at this stage. While she is reasonably aware, her wishes not to be placed in residential care will be listened to.

The S worker will be able to give your cousin a whole raft of contacts and point her in the direction of a specialist day care centre. Come to think of it, Aunt's GP or Geriatric Consultant can do the same. When my mum was diagnosed, they even arranged a twice daily carer to help with her personal hygiene and to surreptitiously keep an eye on Dad.
When he had his stroke, the Carers fed the info up the line and an emergency placement was found for her within 12 hours.

Its easy to 'knock' interfering Social Workers, but if the system works properly, they are worth their weight in gold.

I know it is a really difficult subject. If your aunt is anything like my Dad she won't see any need to go in to residential care because she won't realise she isn't coping. Does your cousin or anyone else have Power of Attorney for your aunt? If not, and if your aunt is still capable of understanding it, try and get it set up. Then if the time comes when decisions have to be made for your aunt at least it will be someone who knows and loves her making them for her, and not some anonymous official.

Unfortunately it is an expensive process these days but, if it is affordable, I am sure it would give you and your cousin a bit more confidence about your aunt's future.

Wishing you well <3

Back home now, Auntie was still in bed, but got up and sat in the lounge in her dressing gown. She was happy chatting to me, and for a moment one could almost think that there was nothing wrong. Except, she is taking her sleeping medication before going to bed, then falling asleep on the sofa, waking up at 2.am . She is skipping meals. We are taking things a day at a time, whilst my cousin is able to cope, both of them are reluctant to talk about residential care or social workers. It's so difficult to what to say or do for the best. We are all going out for lunch one day next week.

Thank you so much for your comments and co concern.

We had to have Fred's girlfriend sectioned and she went into residential care.

He visited every day because he decided she was going to get better and I would go with him sometime.

In all my visits I never experienced any distress or unhappiness in any of the clients. It was a lovely settled atmosphere. Not one of them had any worries and those who wished to walk would join the group who were walking round the corridor together.

They may not have had the capacity to think cogently but they still recognized companionship.

I wouldn't mind going there.

Having seen my Mum struggling with AZ for 10 long years, I feel for all of you.

I understand her saying she won't go into residential care, but I have told all of mine that if I get dementia, they HAVE to place me somewhere for 24/7 care.

I would not wish to put any of my family in the position of struggling on trying to cope with me at home.

I promised Mum when she was first diagnosed that I would make sure she would always be safe and looked after wherever she was.

With no regrets I kept my promise until her peaceful end in a local nursing home on Boxing Day 2011 <3

you really need to get in touch with GP or Social Services to get some sort of care package in place - e.g. someone to go in a few times a day <3 <3 <3

Thank you all so much, its early days for us yet, but having had my late MIL suffer, I guess I am looking at longer the term implications,

You are all very kind.

Its so difficult when they've expressed a wish not to be taken in to residential care. The flip side is that if your cousin's own health suffers, your aunt may end up in a not ideal emergency placement.

As Barbra has pointed out, there are support groups and day centres around. They would give your cousin a break.

My heart goes out to anyone who is watching a loved one in the throes of dementia. We had this with my father who was already in semi-sheltered accommodation and was becoming a danger to himself and others. My brother gave up work to share a house with Dad and look after him and it was a terrible strain.

I would emphasis what PatinCyprus said about music. There has been quite a lot of research into the effects of music on dementia patients and it was certainly helpful with Dad. My brother made up some CDs of all the music Dad had loved in the past and, if he was becoming too stressed or aggressive, we would put on a CD and before very long Dad would have calmed down and be singing along with it.

As you say, life can be very cruel. Just be there as much as you can for your Aunt - the lovely lady you knew is still in there somewhere under all the confusion, and be a listening ear for your cousin as she will need someone to whom she can offload the stress.

And don't forget to look after yourself <3

My Dad went to Day care 3 days a week .it helped & relatives can have a break & you know they are safe & being looked after .also they get lunch &.afternoon tea, .hairdresser .& most of all company Gp is first contact don't be alone help is there Barbra

My cousins went through this, they tried to cope with someone who was active and still quite strong. All went ok for a while and she behaved and did what she was told. Then aunty started going walkabout, she'd just slip out unnoticed. She would go local shopping without money, just take things off the shelves. The local shopkeepers were very good and just took most of the products back but some had to be paid for.

In the end Aunty had to go to a secure home, she hated it but only for a very short time. Within days found a friend there and then she was settled. She lived there about 3 years before she died after a series of mild then a severe stroke.

When she went to the home she was only distressed because she didn't know the place as they hate change, it frightens them.

Music of the 40s and 50s would be a great help to take the stress away from your aunt. It will take her back to her childhood/teens. This has been talked about recently on radio.

Your cousin needs to be allowed to go out so having someone to look after your aunt while she can go out, if well enough, would help a lot. Do you think a rota of several relatives could help. Might only mean each giving up a few hours each month. Keep your aunt where she is comfortable and at ease. If they need help with housework look at what the council (I know about the cuts but could still be a good avenue to go) offers as that may help your cousin. Might their GPs have advice?

Others on here may also have come across the problem in their family and can offer more helpful advice. :-)

Thank you. I am hurting a bit today <3 <3 <3 <3

Thinking of you Paula <3 <3

Paula .it is Hard when you see a relative not well .you will make the right decision .a lot of us have had Alzheimers in the family its Heart breaking .just give her a cuddle & maybe take some family photos & talk to her about the people in the family Take care Barbra <3

Thinking of you Paula.

Paula <3 <3 <3