Sharon here. I thought I would take a second to update everyone on my Dad's progress. Sorry that we haven't been updating this blog anymore. In days and weeks immediately following Dad's stroke, things were constantly changing -- his care, his progress, his location, etc. As things have settled into more of a "normal" routine, it is harder for those of us close to the situation to see the daily changes that would warrant an update. In addition, most of us have our own young families, jobs and responsibilities. So, between our normal lives and caring for our Dad, we don't have a whole lot of spare time. But, because several people have asked for an update, I thought I'd post one so everyone would know what my Dad's new "normal" is.
On June 10th, my Dad came home from Woodland. It was a great day! Very exciting for him and for me, since I was the one that got to drive him home. The day was full of ups and downs, because he was happy to be home, but exhausted from the trip.
A typical day for Dad at home is quite different from what it was in the hospital or the care facility. He went from having multiple sessions of therapy (sometimes 5-6 a day!) to only one session, if that. The physical and occupational therapists switch off days that they come. He has a nurse that comes to evaluate once a week and a CNA that comes three times a week to help my mom with the more difficult tasks. He still has good days and bad days, which are hard to predict. On his good days, he seems to be stronger, more upbeat and wants to do as much therapy as possible. On his not so good days, he is more quiet and wants to keep to himself and not do as much.
Physically, he is still very limited. He can move his right arm and leg slightly when he concentrates hard, but neither are really functional at this point. Once we help him get to a standing position, he can support himself for a few minutes, which is very helpful when helping him get dressed and things like that. He usually wants to stay in bed throughout the majority of the day. We know that he is very tired and his brain is still healing, so rest is very important. And now that his room is all set up with a hospital bed, a flat screen TV and a bell to ring when he needs/wants something... I can see why he's comfortable and wants to stay there! :)
The hardest thing for him (and us) continues to be his inability to communicate. His speech has improved very little over the past few weeks which has been really hard to see. After living a life full of making smart, witty remarks on Facebook, writing poems, teaching Gospel Doctrine and communicating with friends and family daily... that has been taken from him almost completely. A couple of times a day, we will hear him say a full sentence or two that is super clear and it always catches me off guard. But for the most part, his speech is still very garbled and hard to understand. I cannot even begin to imagine how miserable this is for him. Its so hard for us to see him get so frustrated with himself when he can't say the words that he is thinking. An example is that when the grandkids come in to say "Hi Grandpa" to him, he will sometimes repeat back, "Hi Grandpa!" instead of using their names, though he clearly recognizes each of them. Or sometimes he will substitute a word or phrase with something completely unrelated, which makes it even harder to guess what it is that he's talking about. For example, he wanted a drink of water, but kept saying "squirrel" over and over. Whats funny about that (but still frustrating for him) is that once we figure out what he is trying to say, we will explain what he just said. Then he will look all confused and surprised that he did that. Some days, when he's feeling a little better, he will just laugh it off. But other days, its really gets him down. We try to remind him that we know that he is "still in there" and that we understand how frustrating it must be to be imprisoned in your own mind. I think maybe it helps a little bit to know that we still get that. The good thing is that he IS still there. I would say that he comprehends and understands 90% of what we say to him. So that is wonderful! He is definitely still in there. Now if we can just get his darn body to cooperate!
As a family, we have continued to support my parents in as many ways that we can. My mom has taken on the bulk of my dad's care and is a wonderful "nurse." She has sacrificed almost all of her own time and has completely given up anything she wants or needs to care for him. I'm sure this will surprise no one who knows her. A few of us visit at least once a week, but those that live in Grantsville are able to help quite a bit more and I am SO grateful to them. Susan has been going on Sundays to stay with my Dad so that my Mom can go to her church meetings. This has been a huge blessing for her, since she has had to miss a bunch over the past few months. Karen spends most evenings and a couple of full days a week there. And Ryan stops by pretty much daily, if not several times a day, to help or to visit. Karen and Ryan have also taken it upon themselves to supplement physical therapy by working with my Dad most evenings. Amazing. I am truly grateful to them for their efforts. And I know it makes a huge difference for my parents.
As for Dad's long-term prognosis, its hard to say exactly what that is. I went with my parents to his latest neurological exam, which was a couple weeks ago. His doctor took a look at his scans and said that his brain still hasn't completely reabsorbed all the blood from his hemorrhage. She said that it would take an additional 2-3 months to do that, and then they can properly evaluate what damage was done to his brain. The good news is that it opens up the possibility of him regaining even more as the blood continues to reabsorb. That's not a guarantee. But we'll take it and hope for the very best! Other than this, its just going to be more of the same every day. More therapy. More taking care of his needs/wants. More trying to keep his spirits up. More of finding a way to break through the monotony. And balancing that with making sure my mom's needs are met as well. Overall, I do think that he is glad to be at home, even if it is a reminder of how much his life has changed. So I am grateful that he is there.
I've had several people ask what they can do, if anything. Other than prayers, I think that he would love to have a visit or phone call. He can't always talk back to you in the way that he would normally, but he can usually respond well to "yes" or "no" questions. He does seem to be encouraged by visits and phone calls, so please feel free to do so. It would be best to call ahead of time and coordinate with my mom, to schedule around therapy and other care visits and make sure it's a good day. Thanks to everyone for your support and prayers. Keep them coming!
