I'm taking advantage of a quiet moment when dad is sleeping to put down a few thoughts for this week's blog. Because when he is awake, our moments are not quiet.
Bless his heart, dad is just uncomfortable in his own skin. He can't sit still and is constantly asking for help, even though he's not sure what he needs help for. He is wobbly but he can stand and shuffle around with his walker enough to make it scary for us, afraid he could fall again, so he can't be left alone even for a minute. He knows us, but not what day it is, by any stretch. Or what he said or did five seconds ago. His sense of time seems to just be gone.
Being here in my childhood home in Virginia with my mom and my brother caring for my dad, thousands of miles away from the place I lived for so many years with my beautiful late husband in Hawaii, is an experience I will never forget. I know, some day, I will look back and be grateful for the opportunity to care for him with love, as he did for me so many, many years. When I finally am able to put him to bed - when he finally agrees to go - and I kiss his forehead and tell him I love him, and he tells me he loves me, it is a moment to treasure. But it will also go down as having been a very, very difficult time. It is physically and emotionally challenging and exhausting for all of us. We are, with great sadness, having to look at other options, because we are now realizing we cannot do it all ourselves. His specific issues and needs are just more than we can handle right now, even with the night sitters we have hired. Most definitely it is more than mom alone can do. So my brother and I are here until we figure it out.
I've had several lovely and supportive conversations with friends, and even members of this Widow's Voice community, about their experiences caring for dementia sufferers. I've learned that every case is different, every person's symptoms are different, and every family situation, in terms of what is possible in terms of care, is different. It has helped a lot. The first few days he was home we all had our own various breakdown moments, but now we have kind of resigned ourselves to the reality. We have found ways to deal with his restlessness, like putting two chairs next to each other so he can stand up, switch chairs, and back again, without physical assistance...but, always with a close eye on him.
We are meanwhile desperately trying to determine whether this rapid change in his mental condition is permanent, or a temporary result of the strong medications he received in the hospital. He was showing signs of slowing down, forgetting things, before this happened, as a slow progression - and it does run in his family, but this last month's decline is rapid and severe enough to really wonder. Because he is so sensitive to everything. Even cold medicines are not tolerated. But those damn doctors gave him an opiate, even after my mom's specific instructions about his allergy to that class of drugs, and then something called Cymbalta. That drug is often prescribed to treat depression, but dad did not have a depression problem. One doctor said well it also calms some people. Well, dad often reacts opposite, which is why we are always so careful about his medications. So we stopped the opioid as soon as we realized what it was, and are in the process of weaning him off the Cymbalta but that takes weeks and then, we are told, perhaps many weeks more before it is completely gone. So we may not know for quite a long time whether dad will come back to the man he was in late September.
We are so angry and frustrated at doctors whose only real job it seems, many of them anyway, is to prescribe more and more drugs but are not available to give any real support or guidance, not taking the time to understand a patient's real issues or sensitivities and look deeper for a more functional solution. Keeping dad sedated is not the answer, but at this point his agitation and restlessness is not only out of character but it is making him miserable and not helping his injury heal and it's definitely exhausting his caregivers. We are just plumb tuckered out by it all. One moment we cry and the next moment we talk about filing lawsuits. I mean, we won't do that, but we'd sure like to, if that was really the cause of this decline.
My husband Mike hated doctors, and he hated all the drugs they prescribed. After his small stroke six months before he died he was in the hospital for five days during which time they pumped him full of so many drugs that made him feel terrible, and fed him such poor quality food, certainly nothing a diabetic should be eating, he told me, honey, you know I'm never going back in the hospital again. I didn't pay much attention to that comment until after he died, when it came back to me with a start. And so he didn't. I still find myself grateful that he didn't have to, and that he passed away so quickly and quietly in his sleep. I wish my dad could find the same peace. This kind and gentle man does not deserve what is happening to him right now.
These past few weeks here have been about my dad, and my mom, and my brother, as we find a way through all of this. I don't think much about myself...I don't have time, or energy, and I don't really need to. The foreclosure on my house is in process in Hawaii, and I want to give everything I have to my family right now. It just feels right. But I want to share that I know my time of blossoming into the self I was meant to be, with my new career in nutrition counseling in a new city with new people and places to explore is ahead of me, so I don't feel totally bereft. I will get through this, as I have also somehow managed to survive the death of my husband. But only with the support of all of you. So, thank you for reading, and for reaching out. It has, and will continue to, make all the difference.