Tender Moments

Today I silently stood in my dining room, unnoticed, while observing my sweet nine-year old daughter read a book to her grandma. Anna read the little board book with all the tenderness, patience and expression that one would use with a toddler. She pointed to the pictures and counted the animals. Then she placed the book gently on my mother's lap and took her hand, patted it and gently said, "I love you. Do you know that?" She smiled and kissed her hand then my sweet little girl started to stroke my mom's head and tell her how beautiful she is. I could not ask for a sweeter manifestation of love and tenderness, and it was all done in what Anna believed to be utter anonymity. Tears rolled down my cheeks as I watched the tender exchange between my daughter and my mother. Love freely given--all Anna received in exchange was an occasional smile. When I talked to her about the interaction later, she shyly smiled and replied, "That's what grandma used to do to me."

I have tried to look for the good that can come in this difficult situation and there have been quite a few good things emerge. One of my hopes has been that my children will come out of this experience better people. It hasn't always been easy on them. I have missed events and out of town trips with them because I had to stay home and care for my mom. They have helped me move her and feed her. They have waited as I changed her and dressed her. They have watched her thrash in seizures. They have felt the loss of their grandmother, and they have watched her change into a vacant person. But I believe they are learning patience and compassion. I hope they are learning the joy of service. 

Add caption

Today was a moment that I do not want to forget.  I was so pleased with my daughter who has come a long way from the day when she confessed to me that the changes in Grandma scared her. We talked later that day about some of the things she remembers about my mom from before the dementia. Anna reminisced about "grandma play dates" and the pajamas that my mom sewed for her. It is a struggle sometimes to keep the memories alive when the present shadows the past. I'm grateful that my kids have a few memories still of how my mom used to be.

Qualifying for Hospice Care through Medicare

It has been awhile since I posted. Life has continued on and taking care of my mom and my family has just become so routine that I haven't had much to say. That being said, however, daily life is still an adventure.

We finally arrived at the point that we qualified for hospice care paid by medicare. I called the hospice agency when I was convinced that my mom was in her last days. They were so helpful getting things set up and were, quite honestly, a godsend. My mom rebounded ie. didn't pass away, but the team was in place and we set it up so that I would have help getting her bathed and dressed 3 days a week. Most comforting to me was that I finally had a support team for when the end does come. One of my worries has long been having to call the ambulance, who may or may not, listen to our end of life decisions, and then proceed into a hectic end rather than a peaceful passing with people who know and understand the situation.

My mom doesn't recognize anyone as far as I can tell. Sometimes she will give a greeting of recognition but then she gives that same greeting to complete strangers. I wish all the time that I knew what, if anything, is going on her mind.

The largest measure of her decline in the last 4 months has been weight loss. Regardless of regularly eating, she continues to lose weight. She is barely 100 pounds. She is skeletal. That is one of the most difficult things for me to watch because I am in charge of feeding her. I struggle, all the time, asking myself if there isn't more I could do to prevent her from wasting away. The hospice nurses assure me that it is part of the process, but that is one part that is painful for me to watch. (ok--all of them are painful to watch, but not all of them can be linked to something that I am solely in charge of, such as feeding her.) I can be pretty hard on myself when it comes to accepting that I am doing all that I can/should be doing.

Here is a link to the medicare hospice page. http://www.medicare.gov/coverage/hospice-and-respite-care.html