Expert: Mary Gordon - 2/23/2009

Question
My dad had a pace maker installed in 2006.  The day he came home from the hospital we noticed he had no short term memory.  He could not find the bathroom in the house, he asked questions repeatedly, forgot the date, the day, but now long term memory is sharp...he can tell you what wire nut he used on a customers house 25 years ago.  My mom...is just the opposite.  She does not remember ever eating certain foods that we eat regularly, she does not remember seeing or doing things from the past, she gets up frequently at night to go to the bathroom, forgets to bathe, had to quit work because she forgot how to do her job. My dad has cancer and will be taking chemo and radiation on a weekly basis....she wants to care for him....and I am a bit concerned...I have talked with the cancer center and gotten his schedule and done a calendar for her...When do I put my foot down and take her independence away? He is 83 and she will be 80 in July.  They live with me.  I just want to know what to expect.

Answer
Hi Karen

I don't think there is a way to sugar coat this, so I won't try. I think it is extremely likely that your mother has a progressive dementia. She should be properly evaluated and diagnosed so you know exactly what you are dealing with, and what, if anything can be done to slow it down. A good examination will include an assessment of her deficits - which are very likely to be far more extensive than you suspect.  Her issues are very likely to go far beyond memory - her ability to reason is very likely impacted as well, her judgement, emotional control - everything you need to make good decisions and look after yourself and another person.   

She should not be in charge of your father's medications - or her own, for that matter. Hopefully, since they live with you, you can come up with an alternative - which might be to leave only doses of meds that are meant to be taken while you are out, and keep the big bottles out of sight and reach. It's not a matter of taking away independence. Its a matter of making sure both of them are safe.  

You can do a little demonstration for yourself. Get out the calendar. Tell her the date and ask her to show it to you on the calendar. Ask her to show you a week from today, or two days ago. Ask her if this is February, what month will it be two months from now.  I'm willing to bet she can't understand a matrix like a calendar, or understand sequences. She is probably having a lot of trouble understanding time and reading a clock. Ask her to make up a medication chart with days of week across the top and put times down the side, and get her to show you what times she should write in for pills that have to be taken four times a day.

I hope you aren't suggesting she can drive or even escort him to appointments on her own. Between the two of them, they have no short term memory, so you can't expect them to manage planning and getting themselves out the door to appointments on their own. That requires intact "executive function" to achieve. Here is definition of what that term means.

Sheldon H. Horowitz, Ed.D, Director of Professional Services at the National Center for Learning Disabilities (NCLD) offers a description that reflects the views of many experts. He says, "Executive functioning involves activating, orchestrating, monitoring, evaluating, and adapting different strategies to accomplish different tasks … It requires the ability to analyze situations, plan and take action, focus and maintain attention, and adjust actions as needed to get the job done." This is one of the things that is impaired in people with a dementia, that leads to major problems with daily living.

On your father's front, his issues at the moment appear to be related to short term memory, which could be from a progressive dementia, or from past damage, such as a mini-strokes. What does his doctor think is causing this? If his doctor has not investigated this, and referred him to a neurologist or other geriatric specialist, its time for another doctor. You need to know what is going on with him as well, so you know what to expect.

Rather than confront them, find face saving ways to support them. We were able to sell my mother in law on a half day housekeeper by presenting it as her humoring us. The housekeeper was actually a homemaker/caregiver from a specialized agency. She provided the prompts my mother in law needed at that relatively early stage of her dementia - she made sure my mother in law had some breakfast, bathed, put on clean clothing. She prompted her to make and eat an appropriate lunch. She unobtrusively watched the medications. She did the laundry and some basic cleaning. She'd walk to the corner store with her, making sure my mother in law got what she was after, and the correct change. She even would help her get into a cab at the right time to go to her appointments (and the doctor's office knew to put her back in a cab to get home - we had a special account with the cab company so the bills came to us and my mother in law didn't have to pay cash).

Even though the homemaker was only half days, five days a week, it was HUGE and really helped us keep my mother in law independent longer. It was an independent set of eyes and ears on what was going on when we weren't there.

You might want to look into what supports are available where you live. Can you get help from your faith community? Are there agencies and programs that might provide services where you are? Are there other relatives or family friends or neighbors who might be able to assist?

I'd strongly advise you get some answers from their doctors on what in specific is causing the symptoms you report.  That is the only way to be able to anticipate what comes next, and what you need to prepare for. If they do have progressive dementias, you need to be preparing financially and legally for the storms ahead.

Here is a really good article on the experience of dementia that may give you some real insights on what your parents may be going through.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Hope this helps. I know this is tough. Just keep telling your mom, the one thing she can do better than anyone on earth is love your dad, and that is her real job - to be with him and hold his hand. So, she doesn't need to be the one doing the physical labor to look after him. What he really needs and wants is just her, sitting by his side, being there, being his comfort and companion.  

Mary G.