JOAN’S BLOG – WED/THUR, FEBRUARY 15/16, 2012 – NEVER PREPARED ENOUGH

Two more occurrences last week that made me realize I am not as prepared as I think I am for taking care of my Alzheimer husband’s needs.

First, I was given the opportunity to fill out an application for respite care for the both of us. Since the respite place would be providing respite for Sid at home, one of the questions was – Caregiver Responsibilities – under which there were 3 lines. Another light bulb moment for me!  3 lines – are you kidding? I realized that not only would I need an entire page to list my responsibilities, but that I had better make a record of it in case I get hit by a truck or some other unforeseen disaster strikes me down. How would anyone know which pills to give Sid when, and based upon what blood sugar readings. How would anyone know how much gastro-intestinal medication to give him based upon which bathroom situation? How would anyone know when and how much pain medication to give him based upon his pain level? I make these subjective decisions according to his blood sugar levels, bowel issues, and pain levels. How would anyone know how to calm him down if he becomes agitated? How would anyone know anything, unless it is in writing. I pride myself on being as prepared as possible, as all the legal papers were done 6 years ago, but I did not have this particular book written in advance. A complete detailed list of my caregiver responsibilities is next on my “to do” list. I found this book that may be helpful - http://astore.amazon.com/wwwthealzheim-20/detail/1932021124  in preparing that list.

Second, a friend of mine, whose husband has Alzheimer’s Disease, went into the hospital on Monday for a knee replacement. Everything went fine, and she was back home on Friday, with one of her daughters holding down the fort. The plan was to have one daughter for a week, and the other daughter for another week. Then she and her husband, with the help of driving friends, could manage. Talk about “unforeseen disasters”. She got up in the middle of the night to go to the bathroom, and both she and her walker ended up on the floor. The walker was fine. She broke her hip, is back in the hospital, had hip surgery (same leg as the knee replacement), now has an infection in the knee, and will be going to rehab for about 6 weeks. After the initial two weeks of daughter duty, both of whom work, they are scrambling around trying to figure out Plan B for AD husband (whose behaviors can be quite challenging).

This unfortunate situation woke me up to the realization that I have no Plan A, B, or C if a disaster such as my friend’s, should strike me. I have no funds to send him next door to the ALF for respite; I have no nearby relatives who could or would stay at the house with him; I cannot ship him 3000 miles across the country to my son in San Francisco, who lives in a small apartment. He has one relative, who works full time, and lives in Massachusetts. After I finish making a list of my “caregiver responsibilities”, I will call my social worker, and try to figure out at least a Plan A.

My family and I have discussed and made a plan for my unexpected demise, but not for my sudden, emergency, temporary disability. What about you? Have you given any thought to these issues?  It seems that no matter how much we prepare, we are never prepared enough.

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