Life is a process and since I have been in ADland for years now, I think it is fair to say that I have processed a few things. When my husband was home (he has been in a dementia ALF for 18 months) I did not have the mental or physical reserve to process much at all other than getting through the day without going crazy.
The other day I was reading the description a mother wrote of her life with an autistic child. It struck me that there were many similarities to my life with an AD spouse: being nonverbal or having unintelligible speech, emotional lability including outbursts, inability to dress, eat, sleep, the need for constant monitoring, etc. My heart went out to this mother because although I do not have an autistic child, I related to the life of constant vigil, responsibility, frustration and fatigue that she experiences.
The difference is that my husband had 58 good years of life, doing the job that he enjoyed, driving, cooking, being a part of a family, raising children, mowing the lawn. The autistic child may never do those things. If I die, my husband is placed and the family will assume his care. The mother surely worries about what will happen to her child if and when she dies. The mother knows that there will never be a "normal" life for her child.
This helped me see that as terrible as AD is, and we all understand the toll, there are other, different situations that are terrible too. This perspective allowed me to feel gratitude for the things in life that did go right and stop ruminating about the tragedy YOAD and what it did to my husband, our marriage, our family. At least for today.
Hi marche, I agree. What you said reminded me of a comment I posted in January on the "Spouse on Residence" thread. I have cut and pasted it here: - - - - - I think it's a mistake to expect friends to understand our reality and then feel shortchanged when they don't. So what if they don't fully understand what we are going through? I have known many people who have gone through realities that I did not understand. Friends who have been rejected by their parents, given birth to a seriously impaired child, seen a child become psychotic or drug-addicted, been abandoned by their spouses, gone bankrupt, etc. Although I sympathized with them and tried to help (sometimes clumsily, in the way my friends try to help me), I did not "get it." Nor could I possibly have gotten it without going through their experiences.
We make a mistake when put ourselves in one category and put everyone else in the category of "normal" people. AD spouses are not the only ones who have been kicked out of what we think of as normalcy - dinner with friends, vacations, golf, or whatever. The folks I listed above are not in the so-called "normal" category, either. It's just that their unhappy experiences are very different from ours, so they can't fully understand our challenges and we can't fully understand theirs.
During the worst part of my caregiving I read a newspaper story about a Mother whose 20 year old son came back from the war completely immobile, unable to communicate or do anything for himself. It cut right through to my heart. That woman will spend the rest of her life caring for her precious boy and agonizing over who will help him when she dies. I thought of her often in my caregiver days and was awed by her strength and humbled by her struggle. We have a terribly sad and lonesome burden, but so do many others. And when it is a child or a very young adult, it is a true tragedy.
Having an autistic 22 year old grandson, I can see similarities between autism and dementia. Both conditions are stressful. With autism, there is the worry about what will happen when the parents are no longer around. There are very few group homes available for these young adults.
It's really great to notice that in spite of all the horrific problems we ourselves face that we have empathy and passion for others in different but similar situations.
I can barely imagine what it would be like for someone taking care of a loved one in a far away, war-torn country, on the other side of the world.
It is Soo true that there are so many different situations that cause intense suffering. I always feel long term caring for a child of any age is a deep tragedy. Yes, if anything good comes from this journey, it is a deeper sense of empathy and compassion. You are so right George.
My 46 year old son is not autistic but has Downs Syndrome and is profoundly deaf. We cared for him at home until he was 7 years old, but then the school for the retarded could not handle him because he was deaf, and the school for the deaf could not work with him because he was retarded. A catch 22. After a lot of research and visiting many facilities we found a facility that could deal with the muli-handicapped. He has been there for 38 years, but that was the hardest thing I ever did. Who would want to place their youngest child and only son at the age of 7? We have been his advocate all these years but are still concerned about the future.
So yes, there are a lot of problems that many of us may not think about.
Many times during the rough caregiving years, I compared myself to a single parent of a child with a disability. I think there certainly are parallels. Much of my sadness, though, was seeing the huge decline and how a once sharp, capable person was reduced to a mere shell of the man he had been. I'm sure that parents of children with disabilities mourn the lives that their kids will never have. Both situations are extremely tough.