Today is Valentine’s Day. The past few weeks have gone down in a blur. I’m not even going to try to give dates, because I really have no idea of time-frames, other than it began between two and three weeks ago.
Before I bring you up to date on the present, I’ll say that I’ve not written in a long time, mostly because, Dad had been pretty stable. He was fairly independent. He could dress himself, walk, eat, even be left alone for short periods of time if someone was close enough to check on him occasionally. He didn’t like mom being gone to run errands and such but knew it was good for her to get out and was comfortable with me being just upstairs. He could still make a sandwich and get a drink for himself. Things were stable like this from the time of their move into their new apartment, in the walkout basement of our home, until very recently. They moved in October of 2012.
Throughout the summer of 2012, Dad was able to get outside in their yard and ‘putter’. He’s been unable to do any actual gardening, farming or strenuous work for quite some time now but he could still pull weeds…which sometimes was hard as he couldn’t remember what was what and would end up pulling things that should have stayed but he enjoyed being outside and could find things to do.
That’s the past, fast forward to the present. It began by Dad saying he didn’t feel ‘right’ but couldn’t really tell us why. Everything seemed fine that we could check ourselves and nothing seemed ‘out of the ordinary’ enough to tell someone, this _____ is happening. Over a two day period, he kept complaining of this not feeling ‘right’ and he, in perceptively really, started not using his left arm and leg. This went on like this for a couple days and then Dad began experiencing horrific leg contractions. When I say horrific, that’s what I mean. So. much. pain. Given Dad’s disease, we can’t just give him the ‘traditional’ prescription pain medication. Also, given his disease, the hospital is the absolutely last place in the world you want him to have to go.
Over a several day period of time, dad took probably five or six pretty dramatic falls. We weren’t prepared for how quickly dad lost the ability to use his legs and he’d completely forget that they didn’t work. Eventually, they stopped working all together. After much consultation with, and a visit from, the home health nurse who’d begun to come once a week a couple months before, we determined he’d had a stroke.
The contractions in his leg kept getting worse and worse and it was apparent that no one could survive that type of pain for any extended period of time. He was working on several days of no relief by this point. During the night one night, BOTH legs started doing that terrible contracting. That was pretty much the straw that broke the camels back. We knew that the benefits of taking him to the hospital, regardless the outcome, outweighed the benefits of keeping him home, at that point. It was a really hard decision to make. LBD patients and hospitals do NOT make good relationships.
We transported him to Elmendorf Air Force Base ER. Elmendorf is where dad’s records are from his double knee replacement surgery, and the ensuing complications which almost took his life back in 2007 or ’08, I can’t remember which at the moment. We were expecting them to keep him, at least overnight for observation. In the end, after a good ‘going over’ by a good doctor who really spent time with him, they sent him home. They felt it probably hadn’t been a stroke but a worsening of Dad’s Lewy Body. A brain CT seemed to confirm that. With those findings it was concluded there really wasn’t any benefit to keeping him and a lot of risk involved if they did. The most helpful development from that ER visit, in my opinion, was the prescription given for his severe muscle spasms/contractions. This has made all the difference in being able to get him, and keep him, relatively comfortable.
At this writing, Dad isn’t able to care for himself. His left arm is completely without any ability to use it. He can not walk. At times, his legs hold his weight. Usually, they really don’t. If you help him stand to his feet, he can ‘sort of’ stand with MUCH support from someone. He does still feed himself, most of the time. It takes him a very long time to eat. We’ve noticed there are times where it’s difficult to swallow water. Mentally, he is often ‘not ‘present’. He has a lot more delusions than before. Often his delusions work there way into his conversations for long periods of the day. He’s often very confused and needs directing when performing tasks such as brushing teeth or moving from bed to wheel chair.
One of the small mercies in this situation is how truly, truly funny dementia ‘moments’ can be. Mom and I have laughed until we’re doubled over and crying from some of the things that are said or happen. Another small mercy is dad’s laugh. He really hasn’t laughed a lot these last few years, like a head thrown back, belly laugh. Whether it’s an effect of the medicine…likely, or not, it’s such a ‘stressful moments’ reliever! Dad’s sense of humor remains intact! He jokingly says it’s the only sense he has.
We seem to have found some stability in this new norm. Dad seems to have plateaued here. We’ve gotten a hospital bed with trapeze and some other medical equipment which is necessary to successfully care for him at home. We have someone who comes every other night to spend the night with dad so that mom can get as much uninterrupted sleep as possible. On the other nights, I am available if extra help is needed. Things are slowly falling into a new routine.
No one can say what the future looks like. Will any of dad’s abilities come back? Will he take another dive and lose more than he’s already lost? Time will tell. For now, we’re relieved to have better tools with which to meet Dad’s new needs. It’s been a difficult, difficult couple of weeks. Hopefully, especially mom but both of us really, will begin to get a bit more sleep and things stabilize even further.