What can I say about Dementia?

My mother has dementia. I think the first time I knew something was wrong with her was when one day she asked me what I wanted for Christmas about a dozen times or more. After the first time I showed her a pair of fleece slippers from LL Bean and even gave her the page out of their catalog so she could order it. Then with the catalog page in her hand, she kept asking me what I wanted for Christmas. It was so unnerving. I turned to my dad and asked when did this start. It was a shock to him too.

It was probably the change in her routine that contributed to this episode. She probably didn't remember my home that well since I hadn't live in it that long. They only visited me once a year and I also did likewise. We live 500 miles apart so it's not like we can get together whenever we want.

My mom probably had been hiding what was going on for awhile, who knows how long. This is another illness, like mental illness, that people hide their symptoms because they don't know what to think or are afraid of what it means. Her case is as classified as early onset (before age 65 and in her case closer to age 60).

Getting my mom to go see a doctor to find out what was going on was very difficult. She refused for close to a year. Then finally we get her to a doctor who turns out to be a quack and affirms to her she's perfectly fine except for the mild diabetes and high cholesterol. The mini mental exam they give is such a joke. By the time someone fails this test, it's too late to start effective treatment to slow the progression of the disease and improve the quality of life for the parent or spouse. This test should not be relied on. If you can believe it, the doctor didn't seem to take my concerns and examples into account. In fact, it seemed that since she passed the mini mental test, he was satisfied that nothing even remotely like dementia or alzheimer's was present.

Of course my dad was satisfied with this pronouncement but I wasn't. I was glad she was getting treatment for her mild diabetes and high cholesterol but I was the still concerned that her mental status was being overlooked.

Flash forward a year and my mom is starting to get lost driving home. My dad has to call the police to help locate her so he or them get her to follow them home. Even at this point my dad is in denial that anything is wrong with her mental status.

Where am I going with this? Dementia and Alzheimer's are debilitating and cruel diseases. What I mean by cruel is that they destroy the mind before they destroy the body. So the family experiences the death of their loved one twice. Watching their loved one disappear, little by little day by day, month by month, year by year. It's not all bad. I've had some wonderful moments with my mom. There are fewer moments now because there's far less of her there than there has been.

I cried a lot in the beginning, sometimes at the strangest times. I could be driving to work or watching a tv show and the tears would just begin to flow and I could't stop. I haven't cried as much lately and I'm not sure why. Am I used to the idea that I'm losing her, that she's dying before my eyes? I doubt it. It's probably that it's been going on almost 12 years and I don't know when the end will be. Not that anyone knows when the end will come. I think it's because I have to be strong for my dad who's started the grieving process recently. It's so hard for him to realize that she is going before him and he'll be without her. How will he manage? That's why I cry now, because of the pain it's causing him.

Guilt and it's not anyone's fault

I teach a NAMI Family to Family education course every fall. The course meets for 12 weekly 2 1/2 hr classes and the course is always full (20 participants). One of the goals of the course is to let family members know that mental illness is not their fault, that they need not have any guilt. To let go of that guilt they feel.

Try telling that to any mother from any culture and you' might be blue in the face before they let go of that guilt. Even though they come to understand that mental illness is partly genetic predisposition in nature, a biological process, they still view it as they gave their child those genes that are part of the cause, as if that it's their fault. No one has a choice in which genes they pass on to future generations. (At least not yet.) IT IS NOT ANYONE'S FAULT!

If only mothers (and fathers and siblings) could realize that it's more important to deal with the reality that their loved one has a treatable illness that is the fault of no one. People are born with all kinds of predispositions to illnesses such type 1 diabetes or muscular dystrophy and we don't blame them for this. It's the unfortunate luck of different combinations of different genes that are either on or off. We are just beginning to understand how this happens.

The important message I'm trying to get across to mothers (and all other caregivers) is to focus on the present and future and assist their loved one in how to effectively manage their mental illness so they can live a productive and happy life just as anyone else would. Don't dwell on the past that can't be changed; just accept it and move on. The sooner you do this, the sooner you learn everything you can about the illness and treatments and services available so your loved one can too and be on the road of recovery, a lifelong journey for many.

If you get stuck in the past your loved one is likely to also. What's the expression, "like mother like...."

This is all meant in the most loving and understanding way from a sibling who became the caregiver in her family. Happy Mother's Day.