Expert: Mary Gordon - 10/27/2004

Question
My mother has had several small strokes which have left her in a condition similar to that of Alzheimer's.  She lives in a fantasy world and is quite difficult to manage.  My sister cares for her.  I have only heard these things indirectly from my sister.  My mother receives Social Security and has Medicare.

I am a University lecturer in South Korea. I am a single man.  I have lived in Asia for 20 years altogether and lived in Hong Kong for 15 years where I worked as a volunteer for a charity.

I am very inexperienced when it comes to dealing with my mother's situation.  I must say that I often experience much guilt, worry and anxiety.  I absolutely love what I do and doubt seriously that I could find the same opportunity in the US. I teach English as a Second Language, I am an MA TESOL.  Also, I love Asia.  But, I often feel I should be in the States with my sister and mother?  I doubt I would be happy there and I am not sure I could even find fulltime employment in Oregon.  I, myself, do not have a pension and looking forward to a meager retirement.  I need to work and I have also been able to help my family out on many, many occasions.  

I have an income of about 1500.00 a month which is a lot for the local economy, but not enough to place my mother in a manage care center.

Could you please advise me?  I really need some help here.  I love my mother and feel it tragic that at some level I may have already lost her.  Also, the guilt is overwhelming at times.  

Any advice or counsel would be appreciated.

Thank you

Robert


Answer
Robert,

I'd like to suggest you purchase and read a book called The 36 Hour Day by Mace and Rabin, published by Warner. It is available in paperback, is not expensive and will really help you to understand the problems and behaviours that go with progressive dementias. You can find it on amazon.com and it is the single best book for caregivers I've ever seen. Perhaps you could send your sister a copy as well.

You will find it full of lots of good advice that will help both you and your sister. I'm sure you and your sister have realized that arguing with your mother, or trying to correct her mistakes and fantasies gets you nowhere. She has a damaged brain, and it will not let her be logical. The best course of action is to change the subject, reassure her, divert and distract her, cajole her, anything but confront her, correct her, argue with her. All arguing does is upset the person, which they remember long after they have forgotten what the argument was about. It is also helpful to  take advantage of idea that works, even if it isn't the routine way of doing things in your sister's household. For example, if your mother is easier to deal with in the morning, perhaps more activities should be planned for the morning than the evening.

Your mother has what is sometimes referred to as "multi-infarct dementia", which is from a series of small strokes. It is the second most common cause of mental decline in the elderly, after Alzheimer's disease.

Commonly, the person continues to have tiny strokes with time, most so small that their family will not even be aware that they are having strokes (i.e. no real symptoms), but over time, the damage accumulates and shows itself in declining mental abilities.

I know how difficult this must be for you, and your worry is completely understandable. It is a truly terrible thing to be far away from loved ones and wonder how you can help. I know there are cultural factors involved, but I am sure your mother was very proud of you and would not want you to sacrifice your livelihood and your happiness for her, particularly since the sacrifice will not bring her back to health. She will continue to decline no matter what you do. You did not cause this. You cannot fix it.

It is agony - the woman you knew is already being dismantled by progressive brain damage. The pain you feel is grief - her body is still alive, but the real "her" is disappearing, and you are mourning her loss.

It is unfortunate that your family went to the US, because as you know, other countries such as Canada (where I am) and the UK have goverment health insurance that make it quite affordable for families to get support to provide good care for the elderly.

You don't mention what your sister's circumstances are, but in short order, your mother is likely to need round the clock care, 7 days a week, which will make it very difficult for your sister to work or look after her family (if she has one). The real issue the need to get affordable help with care that may be beyond her ability to provide.

Does your sister understand the services that are available to her locally? Are there ethnic based support organizations where she lives? Has she contacted the local Alzheimer's Association for information? Many people (particularly if english is a second language) are not aware of all the options there are available to help a caregiver. It takes a lot of research and perseverence to navigate the US health insurance maze. Your mother may qualify for Medicaid as well as Medicare. The rules and programs vary from state to state.
http://www.medicare.gov/LongTermCare/Static/Home.asp

You can find a LOT of information on the internet if you do some google searches by state for senior's services, medicaid, medicare, long term care etc. This might be a very good way for you to help your sister - to give her some leads on who to call or e-mail to get more information.

Would it settle your mind to visit and see what you can help your sister to set up (i.e. while you were there, you could help with making calls to government agencies etc. A gesture like that might mean a lot to her. Since your mother will continue to get worse, don't wait too long if you are able to go for even a short visit - now is what matters, not after a funeral when it is to late to say goodbye.

You are a good son. It is so unfair that your poor mother should have had this happen to her.

Mary Gordon
Toronto