There is a common occurrence in the life of the dementia patient, that of abandonment by friends and family. Often when someone is diagnosed with dementia, people start to pull away. Friends no longer ask you to go out to lunch, family members stop calling, people stop spending time with you.
This is a sad and confusing occurrence, but it happens often for a loving reason. When friends and family start to pull away from their loved one with dementia, it is often because of the underlying love they have for them. It is hard for a person to watch someone they love get sick. People decrease contact because they are afraid. Sometimes the best way they know to handle the situation without causing emotional pain to themselves, is to deny that the person is sick. Or maybe they are scared because they just don’t know how to communicate with someone with cognitive difficulties.
I can understand that. Sometimes I want to leave. Sometimes it is scary and sad and heart wrenching to see Mom as she is right now. It is sad to eat dinner with her and see food fall off her fork when her tremors are bad. It was scary when Mom used to dump out all her medication which Dad had organized for her, and try to re-organize it. Sometimes it’s frustrating on days when Mom is more confused to have to tell her the same thing over and over again. For me though, I am more scared of the day when she might not recognize me or when we can’t communicate at all. I want to spend as much time with her as I can to maximize the good times because, sadly, things will only get worse, not better.
Abandonment happens with many illnesses. I often saw this with patients in the hospital, particularly with kids. Many times a critically ill child would get a visit from their parents once a week, or less.
While it is scary for us, it is also scary and sad for the person with the illness. I asked Mom a few days ago what helps make her feel better and she said she feels better when she visits with friends. She is happy when she sees her kids and grandchildren, or when she get’s to talk to them on the phone. Community is a way to help deal with dementia.
Everyone deals with tragedy in different ways. By writing this I am hoping people know it is ok to be scared, sad, and angry about your loved one’s illness. If you are scared, talk to the rest of us who are in a similar situation, because we are scared too. I hope people with dementia know that even though some people abandon you, which is very painful, it is not your fault they have done so. Most likely it has happened because their love for you brings with it a lot of sadness and fear. I hope the family and friends who are able to keep in contact know what a wonderful, beautiful, and life-saving gift you are giving.
We all do the best we can and if we all keep working together as a community, we will be able to support our loved ones with dementia and support each other.
Blessings,
Rev. Katie
When my father first became ill with a brain aneurism 37 years ago, virtually his entire family abandoned him, out of fear and lack of understanding.
ReplyDeleteWhen I had to move him into a dementia unit 5 years ago, I definitely went through what "they" call anticipatory grief, a term I never would have heard if I hadn't taken a pastoral care class on loss and grief. It was a revelation to me. I had stopped calling, I rarely visit because we live 4 hours away now. I sent photos of the kids, but what to write in a letter?
I continue to struggle with this. It's complicated. I try to take a lesson from my son, who has always loved "Papa" for who he is. My son is content to climb up on his lap and talk. It doesn't much matter if Papa listens, or interrupts. It is enough to hold hands and hug and talk past each other.
It's enough to remember that Papa loves Red Lobster and to remind me to take him out for shrimp when we visit.
Children are often our best teachers.
Hi Kelly,
ReplyDeleteI am sorry to hear about your dad, it sounds like this has been a long journey for you all.
Your point about anticipatory grief is a great one. Sometimes we do pull away because of the grief and how we need to process it to be healthy and whole.
Your son sounds wonderful and I am glad he is such a wonderful teacher for you. Children are so insightful.
Hang in there and do what you can. Sending photos, with just the names of the people on the back and their relationship to the person with dementia is a wonderful idea. It is actually suggested that photos and music are a great way to communicate as dementia progresses and most words and writing just don't work anymore.
Blessings to you and your family,
Rev. Katie
Hi Katie,
ReplyDeleteChris posted your blog and it has a lot of meaning for me right now. The friend I visit in Phoenix is 52, recently moved in with her parents in Sun City West. The diagnosis as of yesterday is early onset alzheimers or Picks disease. (the 2 doctors disagree) but the result is the same. I send cards, usually funny ones. We talk on the phone briefly. and I go visit. I love her, she's my best friend. I feel close to her folks now, especially her mom.
Sharon Hoyenga
Hi Sharon,
ReplyDeleteThank you for supporting your friend and her family. As you know, your presence is the most wonderful gift of all.
Blessings,
Rev. Katie