Every once in a while events lead me to reflect on my decisions. My family chose to care for Mike. I chose to uphold my marriage vows out of the love for my husband. There is NO DOUBT that Mike would have done the same for me. For better or for worse......There are times when I think about other families in similar situations. They have decided to "place" their loved one in homes or divorce their spouses so that they can live their life to the fullest with their children. These spouses chose to live their lives for their children. They have seperated themselves from their ill spouses and moved on. In each of those cases, the families are thriving. They have moved on emotionally, financially and physically. It's difficult at times to look back at my decisions when we are still struggling SO MUCH. My faith is tested on a daily basis but I want so much to believe that the lessons I have taught my children are so much more inspirational and enduring than ANYTHING tangible. I am being honest when I say that it's very difficult sometimes to see how much we are suffering and struggling even though I believe we are doing the right thing - the very choice that I know God would have wanted us to make. I see these other families "moving on" without their ill family member in their lives and I wonder how they feel.
Courtney and Brandon were 7 and 9 years old when Mike was diagnosed. Alzheimer's Disease has been their life, and they have lived with it 24/7. They have rode with the ambulance to the hospital, witnessed Mike getting Last Rites, change his diapers at night, fed him and washed him. They have been true caregivers, in every sense of the word.
Despite all they have given and sacrificed, they are now teenagers and they have the same needs as other teenagers with regard to what they could use in order to make their lives easier. These needs are much bigger and more expensive than the items they wanted when they were younger. So many people thought that we wouldn't have a problem with tuition because of our "situation", including myself. Reality is that I was wrong. I guess that's because on the financial aid form I indicated "married", and that would be assumed that my spouse is contributing financially. Having an ill spouse is like being in limbo. I am a "married widow" without the benefits of being a single mom. If in fact I was a widow, my children would be considered for more aid. Where on these forms do they list: married to someone with a terminal illness who cannot contribute financially???
My daughter has a license but no car. My son is learning to drive and his day will soon come when he will get his license, yet he will not be able to get a car. We simply cannot afford it. I KNOW this aspect of our situation is not unique, especially in this economic climate, yet I cannot forget about those families that have "moved on" and how well they are doing. What exactly is that showing my children? I am not a materialistic person in the least, but there sure are times when knowing you have a cushion to fall back on, is all the security one can use.
I pray EVERY DAY for strength. I pray for an angel to enter into our lives to help guide us and support us in the everyday issues of those facing a young family living with the unique challenges of Early Onset Alzheimer's Disease.
I would NEVER change the decision we made, as a family, to keep Mike at home with us and I am reminded of that every night when I go to bed and lie next to him. I just wish that SOMETIMES things would be easier for me and my children.