Saturday, June 29, 2013

Dearest Blog....I have neglected you for low these many weeks.  I should have written many times, but something stopped me. When our son, Andrew, was a child he would go somewhere for several hours or for an overnight visit, and when he came home we would ask what all he had done.  His usual reply was, "Mom, it's just too much to tell." That is how I feel right now. I have too much to tell, so instead of playing catch-up, I will share the here and now and very recent past. Then over the next several posts, I will share some of the highlights and lowlights of the weeks between early May and now.

How is Billy doing?  My usual answer is "about the same"....but that really depends on the last time I've talked to that person or written. I notice changes in Billy in increments of months. He has been about the same for the last 4-5 months. His weight has stabilized at a good number - 180 pounds give or take a few. His lowest weight was about 165, and he didn't look healthy at that weight. With the weight he lost, he lost a good deal of muscle mass. He eats well if he is fed. He is physically able to feed himself, but he will not finish a meal on his own, and he doesn't mind being fed. If we put a bite on his fork, and sit it down on the plate, he can get the food to his mouth. That takes so long, that I prefer to feed him. I go most evenings to feed him and visit, but I take Sundays off. On Saturdays I pick him up and take him to our Saturday evening service at church.  He enjoys being with us, and his behavior has not been too disruptive to do that. Afterwards we have dinner out with family or friends. I usually have him back to the nursing home by 8:00, and he's ready to get back.

Billy's balance and mobility are noticeably shaky. He sort of does the old man shuffle, moving so slowly that the only way he could be slower would be to stand still. His perception is way off, and he struggles with stepping up on curbs. He steps off of them a bit easier, but I hang on to him so he doesn't fall. It seems his depth perception is off, too, and that may have something to do with him not bothering to eat.  When he starts to take a drink, he gets his lips ready for a sip long before the cup reaches his mouth, and as soon as his lip feels it, he knows to take a drink.

One of the hardest things to grow accustomed to is his silence. Billy has always been a talker and a cut-up, and he got tickled easily.  I so miss his laughter. I can remember so many nights when I would go to bed earlier than he and I would hear him guffaw at David Lettermen. It usually made me laugh because he enjoyed it so much.  He talks so little now, and when he does speak, it makes little sense.  Some of his sentences are made up of only nonsense words, but usually they start with sensible words in the correct order and turn into nonsense.  I haven't decided if the nonsense words are usually nouns or adjectives, but he usually gets the verbs correct. When I picked him up tonight, he said, "I like your schlactallack." Or something like that. His mom did the same thing...she used a lot of alliterative nonsense words at the ends of her sentences. He also blurts out complete sentences that make sense, too. Last week, we were having dinner with family, and my nephew got up from the table. Billy looked at him and said, "Where are YOU going?" It surprised all of us. One thing he still says with clarity is "I love you." He doesn't always say it without prompting, but he gets those words correct.

For the most part, Billy has many more good days than bad days. He's pleasant and everyone I talk to at the nursing home comments on his good nature.  One of the other residents who is much more aware than most of the others often tells me that "he's nice." He does get agitated at times, and he doesn't know how to express that, so he has hit at staff members before. On Fathers Day, we took him and my dad to a restaurant for dinner. They had rolls of paper towels in the middle of the tables in very heavy holders. Billy decided to pick up one and squeeze it, and Shelley tried to take it from him. He tightened his grip, and started to tuck it under his arm like a football!  I finally convinced Shelley that it was not a life or death issue, and he was not using it as a weapon. A few minutes later, he released the paper towel holder.  Like most of the residents in the memory unit, Billy's actions are toddler-like. He picks up things he should not like trash. He reaches for other's food or drink. That is the reason units like this can look so sterile and lamps, pictures on walls, or items sitting around. I love that the unit at this nursing home has fabulous murals throughout that are realistic and homey.

My hope and prayer is that we can keep Billy at this point for a a long while. I've noticed a practice at the nursing home that as residents become less mobile and are not able to wander out of the the residence, they are moved out to the main area. I've learned from some more experienced caregivers, though, that if I don't agree to do that, they won't move him. I want him to stay where he is because he is accustomed to it. He has a routine and the staff to resident ratio is lower, so he gets more attention.

I plan to write more frequently this summer. I have more time right now as I'm off for a few weeks. I remain faithful and give God the glory for giving me strength to face all things with peace and courage.