Bedlam

[jude1950]

For those members who may not know our circumstances.I will give a brief update.

My Husband has been in care since August last year when it became impossible for me to look after him at home...I am disabled because of Rheumatoid Arthritis and angina and my poor Jim had become so aggressive in his behaviour.

He has been in his new care home for three weeks now after spending the previous 12 weeks on an assessment ward when he had to leave his last care home because they could not handle him.

This new home is for later stage dementia patients and also for people like my Jim that can be aggressive and unpredictable.

The Care he is getting seems to be very good the home has an excellent report from CSCI. He also has one to one care during waking hours.

Because of the type of resident the home has some have very off putting behaviour some will shout out, one screams one laughs in a manic way some are in poor phsical health as well as having dementia. In the middle of this is my poor bewildered Jim.

I am finding it difficult to visit him I cry at the thought of what his life has become I cry when I am with him I feel so guilty that I cannot care for him at home.

I am sorry to burden you all with this but I put on a brave front when I people ask how he is.

T feel so helpless I cannot move him yet again as this distresses him ..besides there are few places that will take him because of his behaviour and as I say his care is fine the meals are good his room is clean ... I just hate seeing him there.

I visit him every other day he is a 40 minute drive away I don't know how much more I can take but what else can I do

Thanks for listening and sorry it is such a long and depressing post.

Judith

 

[TinaT]

Hello Judith. The shock of seeing your lovely husband in such a situation is heartbreaking. My Ken was on a particularly violent ward at the hospital for 9 months and I never cried so much in all my life.

My Ken was not violent. He was anxious, frightened and in a world of his own. He suffered black eyes, lumps and bumps on his head and his clothing went missing on a daily basis. His glasses were smashed. Some days I couldn't take him off the ward because someone else had been taken off the ward with his shoes on or his coat on.

There were some very frightning men on the ward. Men who screamed out if you went anywhere near them, men who shuffled up and down, up and down all day long. men who would throw a hot cup of tea at you. I was frightened and hated the thought that my husband was being kept in a place for such people.

The weeks passed into months. I visited him every day. I got to know some of the men, learned to understand them better. They became people, not monsters. I could talk to some of them, have little chats. I began to like these men. I began to recognise when they were going to have a flash point and I began to see when they were kind and courteus to me. Slowly I began to accept the situation. I made friends with other wives, learned their sad stories.

The ward became a 'normal' place to be and I had become absorbed into the fabric of the place.

Ken has now left the ward and is in a specialist dementia home. This is a mixed sex home with more lady residents that men. Within a few weeeks I had developed a fondness for several residents. Yes they caused problems because of their illness but they also had their own individual personalities, some of which made then very endearing and loveable. I met their relatives and slowly this place has become 'normal' to me. Here he has a room of his own, so his clothes don't go missing,his glasses don't get broken and he has managed to keep a watch on his wrist for 6 months. I am treated kindly by all the staff as are all the residents. Two fiesty ladies had a fight yesterday and knocked each other on the floor. The staff dealt with this in a kind and sensible manner.

What I'm tryingto say is that my poor man is one of many who have dementia. They all display similar symptoms but their own individual personality is also a part of the mix.

Two years ago neither Ken nor myself would have dreamed that we would be now living under such circumstances. We were very private people who enjoyed each other's company. Now he lives in a large mixed community. Ken copes with his new life as best he can, given that he is sufferring from dementia himself and cannot always control himself. I am coping as best I can. He is still at the stage where we can get out a little together and go to the shops for a few hours in the afternoons. Afternoons are his 'window of opportunity' where the illness is not ravaging him. These are our magic times when we find what happiness we can for a few hours. These are also times of sadness because we both know that he must go back to the home soon before the 'witching' hour when his demons take over his mind.

It is so hard to adapt but if we don't adapt and keep our heads high, then we may miss some very good, special times which we can still thankfully have.

Whoever said that the older we get, the less able we are to adapt to new situations? It's necessity which forces us to adapt and who knows, turn out to be better human beings than we were before we were so sorely tested.

xxTinaT

 

[Tender Face]

Judith ..... (now having stopped sobbing after reading Tina's beautiful response!) ... my heart absolutely goes out to you. My mum was only briefly in a home and more for nursing than dementia needs ... but I felt desperately - much as the home was lovely - she just didn't belong there and the guilt of not being able to keep her in her own home ........ even though I knew logically it was impossible .......

Other residents with what were probably EMI nursing needs on the unit used to distress some of the staff - although my mum was oblivious mostly (or occassionally rude to them depending on her own mood!) ..... I know I surprised staff at times when I acknowledged that those people causing a commotion simply had their own health needs - and actually I was 'lucky' that mum's dementia, alongside her physical health issues, turned her into someone frail and vulnerable rather someone who was aggressive and verbal and therefore did not pose an 'issue' to others ...... I was always very aware that it could well have been mum creating the disturbances .....

Perhaps you need a break from visiting? If you are happy with Jim's care, perhaps you need a little time out for some TLC for yourself?

Love Karen, x

 

[Grannie G]

Dear Judith

It is so difficult for you. I had something similar for 19 days and will never forget it.

I managed to get to know some of the other patients which made me feel better, but sadly Dhiren was unable to. He did not want close proximity with these people, he did not want them to sit by him, to touch him or to try to communicate with him.

I spent the mornings full of anxiety wondering how he`d be when I visited, the afternoons full of anxiety wondering how he`d react when I left, and the evenings full of anxiety wondering how he was and what he was doing.

I have no answer for you Judith. You are going through the hardest time and I can only sympathize.

Dear Tina,
Once again, from you, a most moving and wonderful post.

Love xx

 

[Skye]

Dear Judith

My husband too in in an EMI unit.

When he was first admitted I was horrified by the lounge area. People were shouting out, shuffling up and down -- yes, it did appear to be bedlam.

But once I got to know the residents, that didn't matter any more. They are people, and if you can go and spend a few minutes with them, talk to them, hold their hands, you'll get to know their individual personalities, and they will greet you as if you have come specially to see them. Let's face it, many of them have no other visitors.

I love them all, and the staff are so kind, to them and to me.

John has now no mental health care problems now, apart from the fact that he can't speak or understand. I could have him transferred to the nursing section if I wanted, but that's the last thing I want. They are my new family.

My advice would be to visit as much as you can, and try to get to know the other residents. I'm sure you'll be happier once you do.

Love,

 

[connie]

Dear Judith,

You have been given advice from fellow members who have been through just what you are experiencing. There is no easy way.

Our husbands/partners are unable to live with us, so we must embrace their world. Tina's post, as ever, was spot on.

I can echo Hazel's words:

My advice would be to visit as much as you can, and try to get to know the other residents. I'm sure you'll be happier once you do.

As well as the other residents it is always good to try to build up a rapport with the carers, acknowledge the staff too as people. Lionel has been in care now for two years.

I know when many of the staff have birthdays, or are going on holiday. All helps to pass time, especially when residents are having birthday parties too. They are now all his family. I have learnt to embrace them as such.

Take care, and be gentle on yourself.

 

[jude1950]

Thankyou all for you caring responses.

I do know that the other residents cannot help their behaviour and if I am approached by any of them I always treat them with the respect that I would hope others would have for Jim. He does have the aggression and I worry that he will lash out more in fear than anger he gets annoyed when it is noisy, in particular the poor lady that screams out seems to upset him the most.

IT really is catch 22 he cannot be placed in a care home that is not registered for dementia yet he responds better when the enviroment is calm. He is on Halperidol at the moment three times a day with the usual side effects! when they try to lessen the dose he becomes aggitaded again.

Perhaps I am worrying too much.... the staff are very kind and they tell me he sometimes sings and laughs with them I tend to think of how my James would react but of course he is not my James anymore he is Jim who is a totally different person.

That is the hardest part and sometrimes when my "James " shines through it makes it even harder.