General Chat

Hi Imelda,I have been where you are now. Cutting along story short my mum went in a home last Oct. She went in for respite care, against my wishes as my dad was having a knee op. Within a week the social & care home were saying that she had to move as she got out twice at night. I say she was just confused & looking for a toilet & saw a door & went through it. Anyway, she then went into another home, we looked round it before, turned up un-announced. Everything seemed to be ok. Activities sheet up on wall. My dad then excercised his right to keep her in there. I am now split from my dad because of it but I went through 4 months of agony & anguish. Was in tears, getting up at 2.30 in the morning in tears. My mum just wandered around aimlessly. She lost nearly 2 stone in weight as well. I still hate going in the place to visit. I have watched all of them go down but mum seems to have found her level now. She also has taken up with a fella in the unit. Like a teenager, holding hands, kissing. She calls him by my dad's name, he calls her by his wife's name. He was our blessing, I dread to think where she would be physically & mentally now if they had'nt got together. They are both in their 80's.
Now got a bug in unit & been asked not to visit for a few days. All the new ones that come in seem to be like your dad. I do hope he settles down after a while but I do understand your anguish. There never seems to be enough time & carers for the activities. Still breaks my heart at the things I see in there.
Hilary. xx

Imelda, my heart goes out to you as you struggle with this dilema. My mother was sufferer. It came on gradually at first and we thought it was just a sign of old age. I encouraged my father to have her assessed and she was give a psychriatic nurse who came regularly to visit her. My father's health was failing but he continued to look after her at home. He died suddenly of heart failure but my brother had already agreed to move in with Mum to take care of her. He did this for 5 years until it was no longer possible. I could see how distressed he was getting and we made the decision together to approach Social Services to find her a place in a home. She was again assessed and within a week they had found her a place in a Care Home which was a short distance outside of the village she was living in. It is an old Manor House which has been converted and it is set in lovely grounds. The staff were very caring and yes my mum did wander around the house but they were always keeping an eye on her. She was going blind and almost deaf. The only way she recognised people was by their touch. She did not know their names but she was able to tell who each person was. She did not know me for the last few years of her life and I felt completely deserted. Her health gradually failed and she was admitted into hospital. That was an awful time. She was very frightened and as is often the case with the elderly was not treated kindly. They told us that they could not keep her there as they needed the bed. We were at a loss to know what to do for the best. I live with my daughter and she offered to bring her here to London, but she would not have survived the journey. However, I spoke to the Care Home, asking for advice. They just said to me 'your mum is our patient and we will continue to care for her.' They gave her a bed with a water matress to help with bed sore and made her comfortable. She died peacefully in her sleep a week later. The staff loved my mum, she used to make them laugh with the outragous things she used to say. She swore like a trooper. When she was well she was quiet and refined, always neat as a pin. That's what the illness does to some people.

Because my brother was living in my parents house we did not need to sell it. The home took both of Mum's pensions and we paid a half yearly fee on top of that. The home is in Cardigan in Wales. I don't know if that makes a difference. Many things are different since the Welsh Assembly came into being.

They did have activities in the home and I do know that the home was adopted by various local organisations. Maybe you could find out if this is possible where your father is.

I do hope that you will find a peaceful solution and I pray that your father and you and your family with have strength to endure.

Issy

I work with Alzheimers and it is truly a sad disease process, and it IS a process. The hardest for me to watch is when the person KNOWS they are confused and is frustrated. Once they cross that line and are no longer aware of it, they can become much more content in the own confusion.
I took an excellent course called Validation therapy, the idea being that one validates the person where they are - eg if someone age 95, is asking for ther mother or their husband, who have already passed on, it simply creates huge anxiety and frustration, to orientate them to reality. 'if my mother had died, someone would have told me, I want to see my mother". We were taught to make some kind of comment which does not upset, because the moment will pass. eg 'I'm sure she'll see you as soon as she can', some will say 'she's busy making supper', or 'I haven't seen her today, come let's have a cuppa'.
Where I work we have an excellent activation programme, every morning Mon-Fri, every afternoon, and a couple of times a week (Fri and Sun) there's an evening programme.They love it when a children's choir come to sing for them, when a local church youth group come to lead them in Christmas carols, when we have 'pet day'. They have a craft room Mon-Fri and make handicrafts for a yearly bazaar, we even have a few ladies who make a quilt every year for the sale. Ongoing jig saw puzzles on a table on every floor, "exercise" classes where a beach ball is tossed among them or a bean bag throw; on thesecure Alzheimers unit (58 patients) they have access to a fenced-in garden area with paths and benches, several of the patients were farmers and/or gardeners and love to go out and weed or help planting in the spring. They also have a quizzes circle, and they are asked a variety of questions, amazing what some remember, they seem to retreat to a time where they felt good about themselves. For some that's childhood, for other's they are a young wife on a farm waiting to feed supper to their family.
You are an advocate for your parent, meetings with the staff should be held after admission, and yearly, more often if necessary. Topics addressed at the meetings should include, nursing care, are there any concerns, likewise with dietary, activation and housekeeping/laundry. That's the best time to express your concerns. It's all documented so you have something in writing to fall back on, if issues are not followed through in an appropriate time frame.
Another thing which helps the Alzheimers is to have a quiet room (proper name a Snoezelen room) where there may be a raised sandbox (with lid!!), soft toys, dollies and blankets, soft music, water therapy (trickling fountain, paint and paper (supervised), a fish aquarium, etc etc. Sometimes the quiet room is used when someone is agitated, fish are very calming, sensory items such as a sandbox are also calming. We also have a variety of hats and handbags and a small mirror available.
hope this is some help.

Mary

Hi Imelda

I really empathise with you, Mum is in a Care Home and it really is the hardest thing I and others have ever done by making the decision.

I really hope you find things will improve, there are many lovely people on here who will listen and give advice to you when needed.

Take care
Frances xxx

dorothy, my nan had dementia, and the same as kitty had sell her home to pay for the care home, your friend is very wrong or on the fiddle, our accountant looked into help so did our mp (labour), its only free or part paid when savings go down to a certain level, the day my nan was assesed for this help as her savings reached that level, was the day she passed away................. my nan had dementia for over 15 years and the last 3 she was in care home..........
imelda, i feel for you, check the home is able to meet your dads needs if not find another one that can, maybe a smaller home............ take care, kaz xx

Divine intervention has happened today!!!
Had a call this morning at work from Mum. The care home had just informed Dad's Care Manager that they can no longer cope with his behaviour and he is being returned to the Mental Health Unit at the hospital. They told the Care Manager that he has been aggressive towards some staff over the last few weeks (nobody at the home has said anything to us about this - and we're there every day).
So anyway, left work early and went to view one new nursing home and one which we had previously looked at but which was full up at the time.
We've put his name down for the latter one, but for now Dad will stay in hospital.
I feel a great sense of relief that the decision as to whether Dad stayed at the old care home or not was taken out of our hands.
As I've said before, we were never completely at ease with it there, but we were too scared to put dad through the trauma of moving again. Now though, the decision has been made for us.
Hopefully, as the new place is a nursing home, as opposed to a care home, it will be more suitable for him.
I'm still worried that once he gets there, it may not work out well, but time will tell.
At least the unit at the hospital is very good. The staff there are very understanding and Dad seemed happier than he has been for a long time, when we took him there this afternoon, but unfortunately it's only a stop gap.
I'd just like to thank each and every one of you for your kind thoughts, good wishes and helpful advice.
It's more appreciated than you will ever know.
God bless you all.
Imelda
xxx

So pleased we could help a little bit..............no matter where he goes, I'm sure it will be in his best interests.

Good luck with everything.

xx

HI my mum has alzheimers she has been in a care home for 4yrs after my dad died he was her carer as i lived over 200 miles away never realised how bad she was i know she is in the best place but even now it breaks my heart to leave her there & i often cry when we leave.they do have some activeties there that they join in with if they want many times we have been to see her to find them playing bingo or snake&ladders christmas they have a carol sevice &party garden party coming up .it is upsetting that sometimes she does not know who i am &she thinks she at a hotel on holiday she often packs a bag to go home &staff just unpack again when they have time.but the staff are lovely and she likes to clear away the tea cups which they let her she is 84 this yr .so even if you are upset try to remember he is getting the best care possible my daughter takes her childern into the home to visit &they chat to the other people there it really brightens there day.

The main thing to remember is that your Dad will have the right care.I know it is not what you want but there was a limit as to how much your mum could do.They will be his carers now and as long as you can see him often you can still keep an eye on his care.Don't be scared to say something if you are not happy about something.
I wish you well and your mum,as it is her husband
Helenx

I hope my PM has helped a little.

I am living with this horrible disease as my husband was diagnosed nearly five years ago now and bit by bit I am losing him a slow but relentless process!

There is a lot of help and support out there and sometimes you do have to find it.

See if there are any Admiral Nurses in your area (they are like Macmillan nurses and are for the carers and family).

Contact your local branch of the alzheimer's society, Princess Royal trust for carers and other agencies they are all there to help support and advise.

Lastly do go on the Alzheimer's website and use their "talking point" forum lots of carers there going through the same thing and you will get support there from a carers angle not the professional, they really do understand and care.

Take care.

Love Linda x

Imelda, that sounds like very good news. Thank goodness you may be able to rest, in your mind and body...... because all that stress of thinking about it, takes its toll on your body too. I'd lost nearly a stone by the time I got my husband sorted.

Kaz - I'm certainly not wrong! And my Accountant friend is certainly not on the fiddle or anything else! He is a well respected Financial Adviser. His advice led me to the Social Services person who confirmed what he had said, and as I said, I got 80% funding! And it wasn't just her say-so, it went through the PCT system.

Unfortunately, as I said earlier I found the local Alzheimers branch useless and also the supposedly helpful Carers Groups. They did offer that I could go and talk things through with other people in the same situation, but what I wanted was practical advice!

For instance, the Psychiatric Hospital that my husband was first sent to was, as I said 25 miles away, in a remote area in the country. There was one bus a day and the train service stopped at a village 4 miles away. There no other properties near it. Due to my husband's massive stroke, I was badly injured and could barely walk, let alone drive. When I asked how I could get to this Unit, one Care Group said ''I should realise that the Mental Home was built where it was to ensure that any escapees were far enough away so as not to endanger others!'' So I asked about any transport.......''well there's a train to XXXX, you can walk from there!'' End of conversation!

My experience was 4 years ago, not 40 years ago.

However, thanks to my friend I uncovered the scandal surrounding a Ruling made over 10 years ago about Fully paid care for dementia patients, that has rarely been applied. For the reason that local Councils have ignored it so thousands of people are being forced to sell their homes unnecessarily and a lot of vulnerable people, both patients and carers are being put through torment.

I also found out that there are several Lobby Groups who have been campaigning to get this put right. One person in particular who's mother had been forced to sell her home started this research and found out about this Ruling and eventually it has been acknowledged - to date the outstanding debt to people like him is several £billions of pounds owed by Councils - I was very fortunate!! Largely I think because coincidentally that chap was in this area, and the local PCT wanted to avoid more unwelcome publicity - so, if you like I was bought off!

The Daily Telegraph has been reporting on this ongoing situation for some 4 years now, and the Government Body who's dealing with it keeps saying ''oh yes, it'll be sorted by xxxx'' and that day goes by, and another date is set........ and so on.

But I won't deny it was a battle and a lot of research!

Dorothy you are not the only one that has fought and won that battle there have been several challenges in recent years.

Well done you.

Linda x

Good news Imelda, I hope you'll be able to relax a little now. Trust he will be cared for, and if you have any concerns, speak up quickly so the worries don't escalate. Love your Dad for as long as you have him. My Dad was spared the indignity of growing old by his early death at 66, I'd give anything for one last hug.
Love,
Mary