A Story about Lewy Body Dementia


Caring for Frank

By Pat Cruse (No published copy right at this publication date)

Edited and reprinted by Natural Medicine Ink for the Elder Care Advice blog.

Caring for someone with dementia?  Become a Certified Alzheimer’s-Dementia Caregiving Specialist online at CertifiedCare.org

Having thought for maybe eighteen months that things did not seem right but blaming tiredness, stress, overwork, anything that would excuse the forgotten phone messages, and being unable to remember where things had been put; the loss of one week’s takings, that should have been taken to the bank but had been hidden in the shoe cupboard; general vagueness and other everyday things that are now symptoms. You feel isolated, have no idea who to turn to for help, or even know if you need help. Frank is my husband, a big, strong, easy-going, hard working man. He is 14 years older than me, but this had never been a problem.

Eight years on from that day there is a big difference. Frank is in a wheelchair and has to have everything done for him. Our retirement, which we were looking forward to so much, was when we hoped we could do the things we never had time for, and go places we had talked about. This is now not an option. We are traveling a very different road. This disease – Alzheimer’s? Parkinson’s? – which is it? Both have some symptoms similar to each other. The doctor does not appear very sure himself. What hope is there for me?

After a couple of years adjusting to the fact that Frank had Alzheimer’s, and still not entirely happy with the way things were going, we then had a new diagnosis – Parkinson’s. Now get your head round that one. I expected to see Frank shaking all over. I think most people think this is the only symptom of Parkinson’s. But Frank still did not fit into this pattern. His movements were sometimes jerky, but he was not shaking all the time. He was hallucinating badly, was joining in with the T.V. programs, and could not co-ordinate his movements. This meant he was having to be fed most of the time. Speech was difficult. He could not get out what he wanted to say. When I tried to move him he was leaning back all the time and appeared to do the opposite of what was required. Falls were many, some resulting in injury. But why on some occasions could he could tell me what the latest news was, remember what we had for dinner yesterday and really went back to almost his old self? Was he putting on the other symptoms? I felt guilty for even thinking this possible.

During all this time he had an operation for an aneurism of the aorta. and a replacement knee joint. He also developed diabetes. Another thing for me to learn about. At this time because he was on so many drugs and the adverse effect of the anaesthetic on Frank, he became more difficult to handle. While in hospital, and appreciating the fact that there were many other patients to attend to, he was being given tranquillizers and sedatives to keep him quiet and manageable. This had a devastating effect on him. At one point he did not know me, was becoming violent, incontinent and incoherent. When he was home with me I was up and down all night, anything up to 24 times in one night, wanting the toilet, hallucinating and falling out of bed.

By now I was finding out more about these illnesses and insisted that Frank was taken off the neuroleptics. This was a difficult time as the doctor and I were head to head on this and in total disagreement. But I won this round, having signed to say I would accept total responsibility for my husband. He then improved a very great degree and I was able to look after him myself. I had to sell our business to devote full time care to Frank. The years rolled on until two years ago when I felt it was time to go into battle again for another diagnosis. At long last I now know what is wrong with Frank; dementia with Lewy Bodies (DLB). Now I know why he had such a bad reaction to neuroleptics. That is one of the symptoms of DLB. But if your reaction to those drugs is bad, you have a fair chance that your reaction to some of the new dementia drugs will be good.

The consultant at the hospital asked if I would be agreeable to Frank going on a three month trial of aricept. This was fourteen months ago. What a change – dramatic is all I can say. Frank’s awareness, conversation, memory and total demeanour is so much improved. He went from this old man sleeping in a chair with a bib on, because he was dribbling all the time, unaware of everything around him, abusive, could not join in anything to this man more like his old self. Everyone makes comment on this. I am very much aware that these drugs do not work for everyone and are not a cure. But surely if the patient’s quality of life improves even to a small degree, then that is of great benefit to their carer and the wider family also. This then must be worth the cost involved. But of course you must find a consultant prepared to prescribe a drug licensed only for Alzheimer’s, being tried on another form of dementia, in this case DLB.

Frank now attends two day centers. One is funded by the Mental Health Trust, and he really enjoys his time there. They organize the days as well as they can by having people at a similar stage in their illness together. This means they can converse and enter into activities suitable to their skills and abilities. This works very well and Frank is always keen to go. The other day center is run by social services. It is a residential unit with a day center. Again this is very well organized and numerous activities are undertaken. They in fact have a cross section of peoples’ disabilities to cater for, from blind people, stroke victims, people with mental health problems and all are elderly. Again it works well due to them trying to keep people of similar mental ability together.

Where does all this leave me? Well, from being shattered with no knowledge of dementia and unable to find anyone to turn to, my life has taken a very different turn, not all bad. I have a very different perspective on life – live a day at a time, and make the most of what you have. Try and turn some of the bad to your advantage – it does work. I have new friends and colleagues who I can turn to. They help me and I in turn help them. I have learned much about dementia and so much about the supporting agencies that are there to help. It’s a big and complicated world out there which we enter but not of our choosing.

Frank is at home with me for six weeks and then goes into a phase care unit in our local hospital for two weeks. This gives me time to recharge my batteries. I do need this time as Frank is wheelchair bound and I have to do everything for him. But because he is on aricept we can talk and laugh and get out and about. Although it is like a military operation to go out in the car one gets used to it.

Our life is so much better now. I will say though. the word guilt is printed in large letters on my forehead. I think like all carers one feels guilty for shouting, having a moan, putting your loved one into respite care or even day care. But that is what enables us to carry on, and a sense of humor is a must.

What of the future – I don’t know what tomorrow will bring but I will optimistically look forward to it, and by so doing will try and improve the awareness of the help available,. and acceptance by the general public of dementia in all its many forms, because we must not forget that any one of us could be the dementia sufferers of the future. Also the realization by the powers that be – N.H.S. and Social Services that we can only move forward if they are prepared to work and pull together to make the road we travel more easily understood. To come to terms with this dreadful disease is bad enough without having to trawl through the endless paperwork, and try and understand if the help we seek is available through the N.H.S. or Social Services. I always thought there was only one pathway, not spaghetti junction.

Caring for someone with dementia?  Become a Certified Alzheimer’s-Dementia Caregiving Specialist online at CertifiedCare.org

By Pat Cruse (No published copy right at this publication date)

Edited and reprinted by Natural Medicine Ink for the elder Care Advice blog.

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Get professional elder care giving advice, advocacy, education and tips for those who care for and about the frail elderly at the ElderCareAdvice blog. We are generously sponsored by CertifiedCare.org. Most posts are written by Cathleen V. Carr, unless attributed otherwise. We welcome relevant submissions. Submit your article and by-line for publishing consideration (no promises!) to Havi at zvardit@yahoo.com, our own editor who will ensure submissions are given the best possible treatment and polish before publication, ensuring a professional level of publication. There is a nominal service fee involved ($45). Allow up to 30 days for publishing.
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