General Chat

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

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

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!

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

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

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.

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

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

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

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

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

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

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 - Do look into it further! You MAY be right in thinking it was because my husband was sectioned - but I don't think so, as the qualifying principle was that he was unable to dothings for himself by fulfilling 3 or 4 questions on a form I had to complete. For example he could feed himself (after a fashion) but couldn't prepare it; he could just dress himself, but not very well. and so on.

When he first went into the Hospital he was reckoned to be only in there for 6 weeks, but it was the result of a visit by a Psychiatrist and the Scan and completion of that form which determined he would be long-term.

Dorothy I am so sorry to hear about your husband.

When you say

""But an accountant friend of mine did a lot of research and found that patients with Dementia - whatever their means!! - were entitled to paid 24hour care, provided by whichever home was chosen. All homes come under the 'eye' of the local Service.""

It isnt the case here in Sussex..............we had to sell Mum's house to pay for her care.............she gets Attendance Allowance and a stse pension, the rest she pays for herself.

The state only pay when her savings get down to £21.500, at over £2.500 a month on fees, it won't be long now.

You probably got it paid as your husband was sectioned...............that warrants NHS funding.

Alzheimer's doesn't ................I have applied and appealed 4 times, they still say no.

Imelda - what Kitty, and others have said really sums it up.

My (late) husband developed Dementia fairly quickly - like someone else here, far too young - he was 63.

I really didn't appreciate what was happening for the first few months, except that he was ''difficult'' - but he'd always been very independent and had a mind of his own, so it was impossible to distinguish at first........ but it turned out he was suffering from mini-strokes which were gradually knocking out his brain cells. After a couple of years of trying to look after him - a very fit and active 6ft4ins - I was on my knees and in despair! (we have no family)

I'd read all those leaflets you spoke of - and quite frankly they were not of this world - so impractical, they were a joke (though it wasn't funny!). My GP wouldn't talk to me of him, ''patient confidentiality''!
and there was no way I could get him to the surgery. Alzheimers Society locally only has a part-time volunteer, who was less than interested! So I struggled on.

Then one night (2am) he literally ''went-mad'' - absolutely terrifying! Out of hours Doctor came at 6am, and sectioned him into a local ''asylum'' - 25 miles away. With a friend's help I got him there - and I tell you, it was horrendous! Built in the mid-19th century, it was vast, with stone corridors etc.etc.

Anyway they finally got him a scan, and it transpired he'd had a massive stroke, which had wiped out 98% of his brain..... he was booked in as a permanent patient.

However, the staff there were wonderful! So kind and friendly that after a while I was content that he was okay.Then the NHS decided to sell the place - for property redevelopment! The staff were appalled, horrified and in tears.....they'd all been given 1 month's notice. The patients were going to be split up into whatever place could take them...... the relatives weren't consulted at all. I was so angry I threatened to write to the papers etc.

At that point I resigned myself to the fact that I'd have to sell our house to pay for him to go into Private Care.

But an accountant friend of mine did a lot of research and found that patients with Dementia - whatever their means!! - were entitled to paid 24hour care, provided by whichever home was chosen. All homes come under the 'eye' of the local PCT.
I was advised to contact Social Services and they gave me a list of Private Homes near our home. After visiting, the one I chose was just 3 miles away and was literally like a 5star hotel. I got virtually full-funding and my husband moved in there - and it was a pleasure (well, sort of!) to visit.

But like Kitty said - there was no recognition - he was effectively a vegetable....... which was mind-numbing, but I had the comfort, like you all, that I'd done my best. He passed away 6 months later in loving surroundings.

So Imelda, they are out there! Contact your Social Services again. You and your family should have peace of mind in this dreadful situation.

The saying goes If you've met one person with Alzheimers...............you've met one person with Alzheimers.

It is a progressive disease that rapidly destroys the brain cells and the effects on any individual are complex and unpredictable.

That makes the care of Alzheimers sufferers so difficult. No-one can predict how long the sufferers are going to live or what the next stage might be.

We relatives have to search for advice and guidance and fight every single day to get the best possible care for our loved ones.

I wouldn't wish this disease on my worst enemy.............the effect on the whole family is absolutely devastating.

The very first time my Mum looked at me and hadn't a clue who I was, I felt completely rejected, the shock and hurt are indescribable.

My comfort is that she knows nothing of the torment we go through as we watch her fading away and is oblivious of the fact that her beloved husband has died..................she has no memory of any of us and for that I have to be thankful.

Hello,

Is carers at home for your dad, etc not an option? I know they can put a very comprehensive care package together for people with Alzheimers so thy cn stay in their home, have you explored this avenue?

Please take things up with the care home you and your dad are the customers, dont settle for second best.

All the best. Jayne

I am sorry that I cannot think of things to say that would make you feel better.......you and your Mum have done your best, and now you feel it was the wrong decision........I can only feel for you and hope you can get some of the useful advice from the other boardmembers on here who have had personal experience of relatives in care homes....

x sally

My mum was in residential care for a couple of years with Dementia.She lived in Plymouth 6 hours away from me.We brought her up here and found a lovely home for her.She was so unhappy and had no visitors other than me as she knew no-one.Ended up moving her back to Plymouth to care home where mums sister had been.She wasn't happy but had regular visits which was better for her
It is such a strain on the family and my OH used to have rows as he felt I was taking on all the worry that is was taking over all our lives.Which it was.
I hope your meeting goes well.I think if you were to move your Dad now you would still find him wandering about.
The main thing is that the staff are kind ,respectful and care for him in the way you would like .It will never be like it was when was in his own home but your Mum could not carry on forever especially looking after others too.

It's a horrible business and know just how you all feel but I'm sure given a little time things will settle for you.

I have 2 good ears for listening anytime.
Helen