Help on the journey


Registered User
Jul 30, 2003
My father-in-law (aged 74) was diagnosed with Dementia two years ago - on the same day that another consultant diagnosed his prostate cancer. Following radical surgery his cancer is stable, but his mental state continues to deteriorate.

He was prescribed Aricept after a private consultation with a neurologist - the psychogeriatrician did not have the budget to fund this medication on the NHS. After letters to his MP funding did eventually become available. However, only six months or so afterwards my father-in-law was refusing to take the tablets and their efficacy seemed to be diminishing.

He has successfully managed to live at home on his own until last week - despite being unable to clean, shop, cook and look after himself. This was depite Social services failure to provide adequate care and support. We live 25 miles away and it has not been easy to keep an eye on him. Daily telephone calls would often be ignored and we had to rely on neighbours' reports on his welfare. It took over a year - and one official complaint - for the social worker to generate a care assessment and plan, and my husband and I had to liaise directly with the care provider to obtain cover for a hot meal to be provided each day - only 6 hours per week were eventually provided by Social Services. My father-in-law subsequently decided to refuse the carers entry to his home and Social services left him with no care since mid May 2003. Indeed, they didn't attempt to try to reinstate any care. We managed to shop, clean and maintain the house while a local agency provided one meal a day. However, but my father-in-law had reached the stage where he wasn't able to make a cup of tea for himself. He has now moved into a psychiatric hospital assessment ward. I feel that if he had more help from social Services and a CPN who visited him more that three times in two years we would have been able to preserve his independence and he could have stayed in his own home, where he was happy.

I just wonder now if he can ever return home. We had hoped he might be able to receive more care at home, perhaps 24 hour care - but without social services help this would be difficult to finance. Can any one suggest some options? He has been diagnosed by the psychjatrist as being severely demented and needing 24 hour care.

In frustration...



Registered User
Jul 27, 2003
Hi Chrissie

Hows tricks - you must both be really pulling your head out and feel as though you are banging heads against a brick wall.

Dad is also 76 and always been very independent and self sufficient - more so since mum died 12 years ago. As a family of 4 children we all live around the country - dad was living in Chester and I was the nearest - just over 50 miles away and myself having a family of 4 (2 of them still young). Dad moved to Chester to be close to a female companion he had met and then his Alzheimers was diagnosed about 3 years ago and he was prescribed Aricept - which fortunately he fell into a 'right postal code area'! Following more and more frantic phone calls from his companion we contacted the local Social Services (against the companions wishes) and again we fell lucky and they were very helpful.

About 18 months ago it was becoming more apparent that dad was unable to care for himself and as his friend (a gentlelady) was dependent on him she was unable to cope. Dad had taken to wandering out in the middle of the night and also becoming aggresive towards people he didn't know as well as those he was close to. The difficult decision was made by us to find a suitable EMI residential home where he would have 24 hour care. It was a hard decision to make and dad cried when we left him that first time at the home. He would stand at the secure doors looking lost and forlorn when we'd leave after a visit - he would not take his coat off or kept re-packing his bag every time it was emptied.

Dad has been at the home for 14 months now and is settled. He was taken off his Aricept about 12 months ago as it no longer seemed to be of any benefit. He is going downhill, he rarely recognises me anymore but manages a smile when I ask, we have very gobble-d-gook conversations which I don't think either of us understand - he waves good bye to me and if I am lucky I get a kiss on the cheek - though by some of his gestures I think he sometimes thinks I am his wife!

what I am trying to say is making the decision that dad needed 24 hour care and that this could only be provided by professionals in a residential situation was a very hard one to make and knowing it was not what dad wanted made us all feel very guilty especially living far away and unable to provide the care ourselves. but he is now safe and cared for and we know that it was the best decision to make. We could never of forgiven ourselves if he had set fire to the house whilst trying to boil an empty electic kettle on a gas hob - he tried it once - or caused a bad accident cos he had wandered into the road late at night.

We were lucky to have the good support of the social services, doctors and hospital and it seems criminal (it is) the way yours have and are treating this matter. The only advice I can give you is the experience of dad going into a home and how it has helped us - that is the priority - we did have to search for a suitable home (the internet was very useful) and visited many in the area till we found this one, although were full when they realised how much dad needed it, provided a temporary option which has now become permament.

Your dad needs the care and as much as we love our homes and memories and our home provides us with a safe and secure haven when some one has Alzheimers that home becomes a death trap. You also need to take time for yourselves and your family - Settle your dad and think about fighting the red tape.

Good luck and sorry I have rambled on



Registered User
Jun 27, 2003

Hello Chrissie - I'm sorry to hear about the problems with social services & CMHN. My mum also has alzheimers & after 12 months of begging, some action is being taken. Mum lives in England & I live in Ireland - so you can imagine my frustration & worry.
I've found that the only way to deal with social services etc. is to find out the facts of what services they should be supplying - including time frames etc. give them the chance to do it & then get on to the Team Leader - even threatening with a solicitor if necessary (I had to do this) to get some action taken. I would also suggest keeping a record of contacts.
This information may seem quite clinical & I know that first & foremost your fathers welfare & condition are what you want to concentrate on - I have often felt that I'm concentrating on these aspects & not enough on my mums well being - I often feel quite helpless & useless to mum. But I pull myself together again & just get on with it & do the best I can.
I hope that, like me, you can take some comfort from knowing you are doing the best you can, in a very distressing situation.
Best of luck


Registered User
Aug 4, 2003
Hi Chrissie
I'm sorry to hear of your difficulties with your father. My own story with my Mum is nowhere near as sad. We had to move her into a care home as she couldn't take care of herself. She is settled and we are able to enjoy being with her because we know she is safe and cared for. However, I have to agree with Suz, it is heartbreaking to see one's parents in such a distressing situation, but a care home is the best solution. I know how hard that decision is to make, and again I can agree with Suz, it's dreadful to leave them behind at the door of the home when they are upset. Remind yourself, you have your Dad's best interests at heart.
Good luck with your journey.