Lbd

[TinaT]

My husband & I lived in Spain and he was diagnosed with alzheimer's disease last June. By Christmas it was obvious that we had to get back to England a.s.p as I was not only working but coping with a husband whose disease was rapidlty getting worse and he could not be left alone. He was prescribed Halperidol to help with his extreme agitation which lasted all day and for days on end
as he imagined that he had lost his keys. We got to England in April of this year and I continued to give him halperidol, at first in very large doses but now we have found a home and he is settling in he is on a very small dose.

He was tested at a Manchester Teaching hospital and last week I was given the diagnosis of Lewy Body disease. I was asked if he was still being given this medication and told the specialist he was on a very small dose now. She did not tell me to stop the halperidol. I visited my GP later in the week and he did not tell me to stop the halperidol

Tonight I logged onto the Alzheimer's web page and discovered that Halperidol can be very dangerous for him. I am bewildered that I was not told this by either the specialist or my GP.

Obviously I will not give him any more of this medication and will contact my doctor tomorrow to ask his advice. My problem is that if I stop giving him this I am afraid his anxiety will return and I hate to see him in such an agitated state. Can anyone advise me on this problem please?

 

[TinaT]

Update dbl

Just to update on my husband's medication. Phoned his specialist at the local hospital. She said that he had been taking halperidol without side effects for a long time and that he was now on a small maintenance dose so continue as before.

 

[Amy]

Hiya Tina,
Well done getting that sorted out so quickly. In fact, you have done really well getting things sorted so rapidly since your return to this country. Are you both adapting to your new lives?
Love Helen

 

[TinaT]

Dbl

Hello Helen,
Many thanks for your reply and your good wishes. When you are faced with as many problems as I have had this past year, a little praise is very, very, appreciated.
I was teaching in Spain in an international school and Ken didn't work but kept house for us both. By June of last year he had done so many strange things that we visited our Spanish doctor and Ken was diagnosed in September as having Alzheimer's disease. From then on Ken's decline was supersonic and by January I knew we had to return to England and get as much help as we could. I left my beloved job in February, sold everything in Spain within a couple of months with the help of a very good friend and her husband (lost a lot of money doing it all in such an emergency situation) and booked our flight with the dog and cat back to England. Our Spanish vet had mixed up the date of the rabies injections with the date of the blood test so the night before they were due to fly to England with us I was telephoned with the news that the dog and cat were not allowed to fly. I hurriedly arranged kennel care until June when they could legally be imported into England, left two very bewildered animals at the airport and cried all the way back to Manchester.
We slept on mum’s sofa bed in the living room the first few weeks and then rented a tiny 1 bed flat just up the street from my mum as a temporary measure. Although my mum is 81 years of age, she was terrific and I just couldn't have survived without her help. As I had no washing machine, cooker, fridge etc., I used her home as if it was my own. I was so glad to have the little flat as it gave mum some relief from our situation. Ken continued to deteriorate and soon needed 'pull ups' I was put in touch with a local care worker. What a wonderful man! He arranged for Ken to go to a day care centre on Saturdays and Sundays and put me in touch with a mountain of useful help and telephone numbers.
That lasted several months whilst I searched for a new home. After a few false starts, I saw a lovely little detached bungalow, put in an offer which was accepted and here we are, more or less settled into our new home at last, despite my breaking a wrist badly enough for me to be rushed off to hospital for an operation to repair it on the day I got the keys. My brother and sister in law worked like slaves helping with the move as I was almost useless because of the wrist! One small criticism of my local social services. When I was admitted as an emergency to the hospital, Ken had to be put into respite care as there was no one to take care of him. I have just received the bill for his care which is substantial. I have no money left now as I have had to spend our savings on buying us a home and furnishing it but somehow I have to find the money to pay this bill.
After 18 years in Spain I am now fully conversant with living in Bolton again: swinging a hover mower around the lawns, public transport, the astronomical cost of living here (especially eating out), buying ‘ready meals’ from Marks & Sparks, the fickle British weather, meeting friends and relatives I haven’t seen in years, having an old pupil of mine as my solicitor, ditto the estate agent I bought the bungalow from, not mangling the Spanish language when I phone up to complain about something, and finally, quite a nice feeling of understanding and appreciating the local humour which amuses me no end! I miss Spain, working, and the good life I had for all of those wonderful years but I do confess to a sneaky feeling of belonging here and am fairly happy to be back (so far).
Although poor Ken is deteriorating quite fast, I am impressed by the medical and social services care we are getting (apart from the worrying respite care bill). He has been for tests to the neurology department of a large Manchester Teaching Hospital under the care of a Professor who specialises in and is at the cutting edge of research into brain diseases and we finally have a proper diagnosis of Ken’s illness. He has Lewy Body Disease which apparently belongs to the Parkinson family of diseases. Two areas of his brain are dying: one is deep in his brain and concerned with motor movement, the other is in his Cerebral cortex and seriously affects his speech, memory and general functions. The mental effects of the disease are almost the same as Alzheimer’s and apparently it is usually diagnosed at first as this. His prognosis is not good. I now realise that the move to England was the only one that I could possibly have done under the circumstances. The only good thing about the disease is that he is almost unaware of his total dependence on other people (mainly me!) for all his bodily functions. Despite all this he is still the kind and gentle man he always was and we do have rare, lovely moments together which touch me tremendously and keep me going.