Debra’s Reaction to “Every Minute Counts” PBS Documentary.

On Wednesday January 25th, PBS aired a documentary about Alzheimer’s Disease. Debra and I are both going to share our feelings about the documentary. This post is Debra’s reaction:

Mike and I were asked to be part of a panel to discuss “Every Minute Counts” after we viewed the film for the first time.  The forum was put together by the Alzheimer’s Associate and several home health care providers.  We were all there to have an advanced viewing of the film.

I will tell you this right off the top:  I had a totally different opinion about the film than Mike did!  It has been interesting to talk about the film as we put more time between the viewing.  If I had to summarize the bullet points of our discussions since the viewing I’d say I’ve softened my views and Mike is growing a bit more concerned.

My feeling is that the film was designed to have a shock value.  Alzheimer’s is a very expensive disease.  Who knows what it’s actually going to cost us because we have only been living with this disease for a year and a half.  The film was VERY clear that the costs are going to bankrupt our society if we don’t put some pressure on the government to make money available for research.   Medicare picks up some of the costs but the actual cost for caring for Mike will be in how to pay for nursing care in our home as long as we can and then potentially nursing home care.  The costs are huge.  The costs keep going up exponentially as we have more and more Baby Boomers aging in the US.

Mike and I are in a good place right now.  His disability insurance is keeping us out of financial harm. So far.  We have no way of knowing what our future holds.  However, after the film I felt like my gut had been punched over and over again.  I wasn’t sure I would be able to add anything to a panel discussion.  I wasn’t sure that my brain and mouth would cooperate!  I felt like my future was in the palm of my hand and what I was holding was burning my flesh.  Not a good feeling at all.  The film was doing a very good job of painting a very bleak future for Mike and me.

Once you see the film you will understand that the two women living with Alzheimer’s were at the end of their lives.  One woman was elderly and her son was faced with a fact that Mom could no longer live by herself and had to place her in a residential setting.  Huge costs looming in front of him

The other lady was a 60 year old Hispanic woman who has genetic Alzheimer’s  Her daughter is her main care giver and she too has the genetic marker and knows that soon enough she, too, will be in the same chair as her mother now sits.  Horrible situations.  Horrible.

Mike is in the early stages of Alzheimer’s I feel we were lucky that we caught it early.  I don’t think anyone can perfectly tell us how long it will be before we see dramatic change in Mike’s health.  But we are looking at something that will be in perhaps 10 years or even longer.  The film did not talk about how Alzheimer’s affects his group of folks.  I suppose it would not have made as a dramatic picture seeing Mike making coffee in the morning.  Or getting his grocery list ready for the week, doing the shopping, working on his blog, etc.  He is doing well.  We certainly know that he has Alzheimer’s.  There is short term memory loss we are dealing with, but it is just the two of us for the most part and we are coping.

For those of us living with Early Onset Alzheimer’s we are in the beginning stages of this disease.  The film was calling for us to understand the huge costs of taking care of everyone that will be affected.  It was not a feel good film for me.  And that is an understatement.  However, I live my life with Mike one day at a time.  I can’t look to the future.  And as the film was being shown I saw my future and I wanted to run. Mars didn’t seem far enough away at that point!!!  Today, as I’m writing this, I don’t have the same feelings.  Mike and I  are fine and are living our lives as fully as we can!  We love each other very much and will continue to work together on this disease for as long as we can!