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First symptoms and diagnosis:
1992, Roger seemed depressed and less confident. He was made to take early retirement from his senior executive management career. It seemed to me that he was in shut-down mode. His usual exceptional sense of humour was very flat and he had lost of lot of confidence.
1993 on world trip he lost his memory in Orlando, totally without warning. He was in hospital for 10 days. This was perceived to be a schematic event. The scan showed small infarcts and a possible blockage from the heart to the brain. He was diagnosed by the US doctor as an alcoholic! This was amazing considering the doctor (psychiatrist) was a well known expert on Alzheimers Disease in Florida!)
1993/4 visits to psychiatrist, counselors (in Australia), needless to say he was not an alcoholic, and no depression was found. The heart specialist found no cause for concern re his heart. Eventually, in early 1994 a psychologist sent him to another psychiatrist who had an MRI done. This showed brain cell atrophy, and some small infarcts. The diagnosis was Alzheimers Disease.
In 1995/96 a neurologist and neurological consultant expert diagnosed cortico-basal degeneration or possible Diffuse Lewy Body Disease. CBD was eventually confirmed due to Rogers alien limb syndrome and general apraxia. His left arm seems to not belong to him.
Symptoms: Since general slow down and some memory loss, symptoms have included severe aphasia and apraxia, inability to plan or organize, wandering (not away but from one room to another).... There has been no treatment prescribed, only TLC, calm atmosphere and routine.
He has had considerable care since 1995, including home visits by government subsidized carers, outings with carers; day respite twice a week; eventually daily carer for dressing/shave etc. Roger did not like people coming to the house to dress him or shave him. He thought he could do it by himself.
respite on occasion and hostel placement August 1996.
Contact the Alzheimers Assoc. from day 1.
Seek advice from anyone with knowledge of the disease or as a caregiver for someone with CBD (for early onset spouse it is very important to seek knowledge, form a bond with someone in a similar situation). I found that comparing notes with carers of parents, or older spouses was not very useful as their situation is so very different.
Always make a list of questions and ensure the doctor answers every one, each time you visit a doctor or specialist.
Always take notes during doctor visits.
Establish a good relationship with all medical professionals and care providers.
Seek legal and financial advice immediately.
Keep a journal of the disease progression and your own health and feelings.
Keep a circle of friends... you will need lots of TLC.
Make a list of the things the patient likes, before the disease progresses.
Do a family history if possible before the patient stops communicating.
Check out all care support options including day care, respite, hostels and nursing homes.
Do not resign from your job if you like it, if there is any other alternative.
Think of others who need you to be OK (apart from the patient) e.g. children.
I was able to get my husband a disability pension, which pays for the weekly hostel/nursing home care. I had to pay a bond, which was a significant amount.
Relations Manager, IBM Asia Pacific, c/- IBM Australia