A Word Of Priase


Registered User
Sep 27, 2006
I know how hard some people here on our TP site have had to fight to get social services to recognise their needs. There have been very upsetting and harrowing reports from families who have definately not had their needs met at even a basic level. In writing this thread I would like to tell my unfolding story of the help and support we have been given.

Ken and I returned to England from Spain about a year and a half ago. We left Spain because of Ken's illness. He did get treatment and we did have a wonderful family doctor there but there were language difficulties. I prided myself on what ability I developed in speaking Spanish but sadly and probably because of early alzheimer disease, Ken never did manage to get beyond very rudimentary phrases.

After a rocky start when we first arrived back in England, help started to appear for Ken and for myself as his carer. Within weeks we had a tiny little rented local council flat on a sheltered development which we stayed in until I bought our present home. Over the following months I had enormous help and support from my social worker, an occupational therapist, a wonderfully caring Hospital Consultant, a psychiatric nurse, visiting podietry service, admiral nurse, a person employed specifically to care for carers, and, surprisingly enough from the local Social Security office who sent a lady to help me to fill in the various forms needed to claim Ken's pension (he had just reached 65 years of age)and any benefits she thought we may be entitled to. After being assessed by the incontinence team, I had regular supplies of free incontience pads delivered, a new wheelchair which was measured specifically to fit Ken, a care worker for 12 hours per week, and a centre which Ken attended for a few hours at weekends. The level of support given was so very gratefully received and was invaluable to me as Ken's sole carer.

In May I asked for and was allowed what they term 'rolling respite' which meant Ken could go into a respite home for two weeks every eight weeks or so. Sady Ken's anxiety and behaviour led to the respite home phoning and asking me to take him home as they could not cope with his behaviour. Then his weekend centre phoned with the same problem asking me to take him home. I found the strain of caring was overpowering me. Ken's consultant thought it best for him to be admitted to an assessment unit at the local hospital.

I needn't tell my emotions when I took him there. I had read other TP members very bad experiences of a loved one in 'assessment' but I had reached a point where I knew I could not go on caring for Ken in our home. The ward was Dickensian; double locked doors, long, barren corridors, 4 people sharing a bedroom, and one central room for eating and relaxing in all the waking hours of the day. Some of the other patients were extremely disturbed, screeching out all day long, some having to wear protective head gear because of head banging behaviour, some unable to walk at all, some wandered up and down the corridor tapping on walls, banging on doors, moving chairs . The staff seemed to be stern and cold. I thought we had reached our own personal HELL. One night he fell out of bed. When I saw him the next day my stomach turned over. He looked as if he had been hit in the face by a bus. His clothes often went missing. Another day when I visited he had been very badly cut about the face when given a wet shave, despite the fact that he had his electric shaver in his locker. Ken was in great distress and constantly asking why was he there, what had he done wrong! My heart broke over and over again but I had to reassure him (and myself) that things would get better for us both.

And they have. Slowly day by day, week by week I have got to know the staff and some of the other patients. I have seen the humanity and kindness the staff show to their charges. I have seen not just severely disturbed and frightening men, but fathers and grandfathers who are suffering from this terrrible disease. I have seen Ken slowly calming down and not suffering from the agonising anxiety which had previously crippled all of of his waking hours.

Today Ken and I went down to the ground floor to see the opening of the new ward which Ken and his fellow sufferers will be moving to on Monday. It has single bedrooms, lots of little sitting rooms, a separate dining room, lovely artwork on the walls and not a corridor in sight, but little linked areas with stained glass windows covered in designs of footballers, or cricketers etc., and - best of all - a wonderful, overgrown, jungle of a garden with a covered seating area.

Ken will be here for a long time, may be for ever! This is a very sad and hard thing to have to face. I visit him every day. We share a few hours of loving, special time together. I no longer torment myself with the guilt that it is my fault he is there. I just feel so grateful that he seems to be having some measure of peace and I value this new phase in our lives together so very much.

xxx TinaT


Registered User
Jan 31, 2004
near London
Hi TinaT

the sad fact tends to be that most people will describe the bad things that have happened, and not feel it necessary to praise the good.

That's why the TV news and newpapers are often miserable things to behold.

Therefore is is particularly good when someone like you takes the time and trouble to post a story here that, while being sad because of the dementia aspect, also lends hope to others who are, or will be, in the same boat.

I recognise much of what we have experienced in your words.

thanks for posting here, and please let us know how Ken settles in his new room.


Registered User
Feb 28, 2005
west mids
Hi Tina,
it is lovely to hear that you have had a positive experience of the "system".

Likewise, since my mum was diagnosed 4 years ago , the support Ive had from the SW , day care , and social services has been fantastic.

The new ward sounds wonderful and its reassuring to think that some money has been spent on improving services for Ken and his ward mates.

Love to you both
Ally xx

Grannie G

Volunteer Moderator
Apr 3, 2006
Dear Tina,

What a wonderful account of your time since returning from Spain.

Because you have provided so much detail, it helps to give a very good idea of what you have both been through.

Ken`s initial time in the Assessment Unit sounds terrifying, and all credit to you that you were able to stick with it because you could see through the horror, to the individuals and the calibre of the staff.

It is so rewarding to know there really is light at the end of the tunnel, with the new development. I hope from Monday, you will share many hours of pleasure.

But even so, there`s so much sadness in what will be your final years together.

On TP, for couples, it is a shared experience.

Take care

Love xx


Registered User
Aug 29, 2006
SW Scotland
Dear Tina, thank you so much for your post. John and I are not yet at that stage, but it is encouraging to know that assessment units are not all awful.

I think it's a great credit to you that you have come to terms with the siuation, got to know the staff and fellow-patients, and turned what started out as a negative into a very positive experience.

The new ward sounds wonderful, cheerful surroundings can make such a difference. I do hope things continue to go as well as possible for you and Ken.