Mom and Dad made an unplanned visit to my house on Sunday afternoon. Unplanned, but certainly welcome. While we sat and talked, my girls were able to catch them up-to-date on all of their girl scout weekend stories. My youngest had been unavailable to help on Saturday, so she provided us all with entertaining stories.
Most significant during this trip was the absence of Dad's wheelchair. He walked from the car to the living room. Later during their stay he walked from the living room to the kitchen for a quick dinner. He isn't ready for the 100M hurdles, but he's really doing quite well. Balance and lifting his right foot higher are still his biggest obstacles, but he's proceeding very nicely. He is using a 4-footed cane and a little help from one of us, but he can move at a slow pace without too much assistance.
We kept them longer than they intended, but I understand they were still able to pay a visit to my sister after leaving our house.
Sunday, April 19, 2009
Saturday, April 18, 2009
The best laid plans...
My eldest daughter and I started with a filling, but not so healthy, breakfast at the Cracker Barrel. After that, we made a quick stop at the storage unit and rearranged all the 'stuff' until it was safely and much more efficiently stored towards the back of the space. Feeling rather good about ourselves, we took off to Mom and Dad's house.
In all fairness, we probably assumed too much. I was planning on taking as much as possible to the storage unit in hopes of making their house easier to sell. Mom was thinking more in terms of emptying the contents back into the house. You can imagine the disagreements and confusion this caused until we all sat down and talked about our options.
Mom has a good point on the need to move back in. However, she also needs to get a couple loose ends wrapped up before we can make any significant progress on bringing furniture back into the house. She's going to work on that this week. My brother conceded that he could use the help in wrapping up the lingering items around remodel. He really deserves kudos for several reasons. Primarily for the devotion and effort he has put into making things right over the last few weeks. I'm sure it's been a difficult battle and I respect everything he's done to finish it. With a little help, I think all should be complete in a short time frame.
At the end of the day, we cleared out enough that Mom felt better about her current situation, if not great. We agreed to reconvene next weekend and try again, hoping that enough will be done on the house that we can actually empty it all out. I admire how Mom has endured and what she has accomplished over the last few weeks. She has compromised, conceded and used creativity to provide a safe and manageable situation for Dad, and still managed to retain her dignity and sanity.
Throughout the day, Dad was in the middle of everything. Sometimes pointing out what needed to happen, sometimes simply intervening between "lively discussions". We may not have always understood what he said, he may not have been able to walk everywhere he wanted to go, but he was clearly on top of the whole process.
In all fairness, we probably assumed too much. I was planning on taking as much as possible to the storage unit in hopes of making their house easier to sell. Mom was thinking more in terms of emptying the contents back into the house. You can imagine the disagreements and confusion this caused until we all sat down and talked about our options.
Mom has a good point on the need to move back in. However, she also needs to get a couple loose ends wrapped up before we can make any significant progress on bringing furniture back into the house. She's going to work on that this week. My brother conceded that he could use the help in wrapping up the lingering items around remodel. He really deserves kudos for several reasons. Primarily for the devotion and effort he has put into making things right over the last few weeks. I'm sure it's been a difficult battle and I respect everything he's done to finish it. With a little help, I think all should be complete in a short time frame.
At the end of the day, we cleared out enough that Mom felt better about her current situation, if not great. We agreed to reconvene next weekend and try again, hoping that enough will be done on the house that we can actually empty it all out. I admire how Mom has endured and what she has accomplished over the last few weeks. She has compromised, conceded and used creativity to provide a safe and manageable situation for Dad, and still managed to retain her dignity and sanity.
Throughout the day, Dad was in the middle of everything. Sometimes pointing out what needed to happen, sometimes simply intervening between "lively discussions". We may not have always understood what he said, he may not have been able to walk everywhere he wanted to go, but he was clearly on top of the whole process.
Friday, April 17, 2009
Lunch with Mom and Dad
Not so many updates recently. Sorry about that, with Dad home I've gone back to working on my house and haven't been the diligent son/blogger. Let's see if I can do a little better this week.
After a call from Mom, I stopped by McAlister's and picked up a light lunch to share with the folks. It was pleasant, relaxing and something I plan on doing more often. In hopes that you never need the information, baked potatoes are almost the perfect food for somebody recovering from a stroke. The food sticks together, helping keep everything on your fork. It's easy enough to chew and swallow, and it still has flavor.
So are cookies, by the way.
After a call from Mom, I stopped by McAlister's and picked up a light lunch to share with the folks. It was pleasant, relaxing and something I plan on doing more often. In hopes that you never need the information, baked potatoes are almost the perfect food for somebody recovering from a stroke. The food sticks together, helping keep everything on your fork. It's easy enough to chew and swallow, and it still has flavor.
So are cookies, by the way.
Saturday, April 11, 2009
Getting out of the house
Apparently, after 6 weeks of fighting to go home, it only takes 3 days to want to get back out. At least, that was the case this Friday. We all met at the Olive Garden and had a quiet and enjoyable lunch. Dad has been fighting to regain an appetite the last few weeks, but did well with a plate of fettuccine alfredo. He's trying to get beyond the thickened liquids, but clearly still has to be careful with water consistency.
24 hours later, we celebrated my youngest daughter's birthday with the extended family. A houseful of guests including Dad. He seemed genuinely happy to be at the festivities, but had to work through over-stimulation with all of the noise and commotion. Through no fault of his own, I think he might have been the real hit of the party. He was certainly greeted warmly by everyone.
Overall, he's clearly much happier than he was prior to coming home. And that's understandable. I'm not sure that he's progressed substantially in terms of independence related to mobility, and his ability to handle most day to day tasks without assistance. On the flipside, he's resting and eating better. By better, I should qualify that it isn't necessarily the nutitional quality of the food that's improved, but his attitude and appetite.
Things are only starting to gear up as it relates to continued rehabilitation. He received a visit Friday from the home health folks. He's still getting around in the temporary wheelchair, and my brother has helped tremendously with an improvised ramp and other necessities. I'm confident that as his strength continues to improve, he'll make more gains towards independence.
24 hours later, we celebrated my youngest daughter's birthday with the extended family. A houseful of guests including Dad. He seemed genuinely happy to be at the festivities, but had to work through over-stimulation with all of the noise and commotion. Through no fault of his own, I think he might have been the real hit of the party. He was certainly greeted warmly by everyone.
Overall, he's clearly much happier than he was prior to coming home. And that's understandable. I'm not sure that he's progressed substantially in terms of independence related to mobility, and his ability to handle most day to day tasks without assistance. On the flipside, he's resting and eating better. By better, I should qualify that it isn't necessarily the nutitional quality of the food that's improved, but his attitude and appetite.
Things are only starting to gear up as it relates to continued rehabilitation. He received a visit Friday from the home health folks. He's still getting around in the temporary wheelchair, and my brother has helped tremendously with an improvised ramp and other necessities. I'm confident that as his strength continues to improve, he'll make more gains towards independence.
Wednesday, April 8, 2009
Dad goes home
6 weeks, 3 days and 12 hours after leaving for the emergency room, Dad has returned home.
Ironically, it wasn't to great fanfare or celebration. We were strongly encouraging him to stay in a 24 hour nursing facility for another few weeks. Doctor's orders, and our own concerns in terms of his care.
He reluctantly gave the facility a 24 hour try, but refused to stay any longer. So we scattered in all directions to locate a wheelchair, shower seat, etc., to assist in his home care. Mom is bravely adopting the role of live-in nurse, knowing full well that she still has a home remodel to finish, and a career that has been set to the side for the last 6 weeks.
My younger brother has agreed to help out during the day, in hopes of giving Mom some time to attend to business, as well as her own mental health. I'm sure that we'll make things work, and confident that as time goes on, Dad will need less assistance.
I'll admit that he is already much happier than I've seen him since this all began. Happier, more content, relaxed and even healthier. We all converged on the house this evening, kids in tow, and talked with him as time allowed. As we left the neighborhood, it was my 12 year old that spoke up and said, "I like Granddad better at home."
Me too honey, me too.
Ironically, it wasn't to great fanfare or celebration. We were strongly encouraging him to stay in a 24 hour nursing facility for another few weeks. Doctor's orders, and our own concerns in terms of his care.
He reluctantly gave the facility a 24 hour try, but refused to stay any longer. So we scattered in all directions to locate a wheelchair, shower seat, etc., to assist in his home care. Mom is bravely adopting the role of live-in nurse, knowing full well that she still has a home remodel to finish, and a career that has been set to the side for the last 6 weeks.
My younger brother has agreed to help out during the day, in hopes of giving Mom some time to attend to business, as well as her own mental health. I'm sure that we'll make things work, and confident that as time goes on, Dad will need less assistance.
I'll admit that he is already much happier than I've seen him since this all began. Happier, more content, relaxed and even healthier. We all converged on the house this evening, kids in tow, and talked with him as time allowed. As we left the neighborhood, it was my 12 year old that spoke up and said, "I like Granddad better at home."
Me too honey, me too.
Sunday, April 5, 2009
Thinking ahead
It's probably Dad's fault, now that I think of it. The fact that I can't get into any situation without automatically running through all of the possible scenarios, and what I should do, or how I should react in each case. Maybe everyone does that, I really have no clue.
In any case, from the moment that I thought Dad was out of the woods, I've wondered how we would care for him going forward. How far would he progress, what level of care would he need, and how would we, as a family, provide that care.
Towards the end of last week, my wife, daughters and I came to the conclusion that the only logical solution was for Mom and Dad to move in with us. To make a long story much shorter, we are in the process of building a new house. Same basic floor plan, same neighborhood, same builder, but that's another story for another blog.
The basic house isn't overly large, somewhere in the neighborhood of 2700 s.f. It's a 2-story home with 4 bedrooms, a study and a 3-car garage. The basic idea is to connect another structure through the breakfast area. We can add over 1,000 s.f. without infringing on any of the building lines.
The addition should have a sizable master bedroom, bathroom and closet. All accessible by wheelchair without feeling like a hospital room or nursing center. Additionally, a full sized living or great room to allow Mom and Dad separation if the chaos of my own family sometimes gets to be too much. All of that connected back to the main house via a wide corridor filled with floor to ceiling windows.
There's still a lot of work to do. We haven't sold our existing house, and Mom and Dad were working towards doing the same thing. They were in the throes of a complete remodel when Dad was stricken with the "brain attack". My brother has done an admirable job of trying to complete the remodel on his own, and the house is really getting close to being market ready.
After visiting with all family members the last few days, I think we're all comfortably in agreement on the plan. Sell both houses first, my family will move into our new house as planned. Hopefully, we'll have all the plans done by the time we close, and can begin construction on the addition immediately. If we're lucky, and all goes well, then we should be prepared for Mom and Dad within 6-8 months. The interim will be a little tricky, but I think it's made more manageable with a long-term plan that everyone believes in.
In any case, from the moment that I thought Dad was out of the woods, I've wondered how we would care for him going forward. How far would he progress, what level of care would he need, and how would we, as a family, provide that care.
Towards the end of last week, my wife, daughters and I came to the conclusion that the only logical solution was for Mom and Dad to move in with us. To make a long story much shorter, we are in the process of building a new house. Same basic floor plan, same neighborhood, same builder, but that's another story for another blog.
The basic house isn't overly large, somewhere in the neighborhood of 2700 s.f. It's a 2-story home with 4 bedrooms, a study and a 3-car garage. The basic idea is to connect another structure through the breakfast area. We can add over 1,000 s.f. without infringing on any of the building lines.
The addition should have a sizable master bedroom, bathroom and closet. All accessible by wheelchair without feeling like a hospital room or nursing center. Additionally, a full sized living or great room to allow Mom and Dad separation if the chaos of my own family sometimes gets to be too much. All of that connected back to the main house via a wide corridor filled with floor to ceiling windows.
There's still a lot of work to do. We haven't sold our existing house, and Mom and Dad were working towards doing the same thing. They were in the throes of a complete remodel when Dad was stricken with the "brain attack". My brother has done an admirable job of trying to complete the remodel on his own, and the house is really getting close to being market ready.
After visiting with all family members the last few days, I think we're all comfortably in agreement on the plan. Sell both houses first, my family will move into our new house as planned. Hopefully, we'll have all the plans done by the time we close, and can begin construction on the addition immediately. If we're lucky, and all goes well, then we should be prepared for Mom and Dad within 6-8 months. The interim will be a little tricky, but I think it's made more manageable with a long-term plan that everyone believes in.
Saturday, April 4, 2009
For your viewing pleasure...
Thought everyone would enjoy a quick video of Dad. One of Dad's nurses caught the footage on his cell phone for us to enjoy. If you can make it out, you can see the hemi walk in Dad's right hand, and some sort of strap that the therapist is using for safety around Dad's waist.
I'll provide another update soon, but I wanted to get this footage out as soon as possible.
I'll provide another update soon, but I wanted to get this footage out as soon as possible.
Thursday, April 2, 2009
Therapy for all
Dad, Mom, my younger brother and I met with the therapists today. A sort of "round table" discussion on Dad. Sort of.. because the table was actually rectangular, but you get the idea.
Leading off the discussion was Ruth, the nurse or assistant to Dad's doctor while at Jim Thorpe. She said that everything relating to his medical condition was good. She went through a variety of medications explaining why each was prescribed. It's kind of funny to think of Dad on Ritalin, but it's actually a common prescription for brain injury patients. Helping to concentrate, etc. They also have him on anti-seizure medication. While I'm unaware of Dad suffering from any seizures, it's fairly common for brain injuries.
In terms of the anti-seizure medication, it makes me think of that old joke. The one about the elephant repellent system. Guy goes on about how well it works, other guy says something about there not being any elephants in town, first guy remarks about how well it works.
Second up today was the physical therapist. Dad is walking better, although he clearly (as is to be expected) is suffering from muscle atrophy on his right side. He actually walked 200' with a hemi walker. I think it's a hemi walker. It's smaller than what you typically picture, and designed for someone using only one arm. So, the 200' is good, but Dad is still largely ignoring his right side without encouragement. They kept referring to it as motor planning, awareness, etc. With a little help, he can get out of his wheelchair. With a little more help, he can walk reasonably well, but not quite well enough to go unassisted.
The really good news at this point in the meeting was the consensus among all of the center employees that Dad would continue to progress for another 6 to 12 months. They couldn't say how far he would get, or what limitations would remain. But it was very good news to know that he hasn't reached those limitations yet.
The occupational therapist "Doni" was up next. She really emphasized the "re-directing" and the motor planning issues. Things as simple as brushing your teeth. She said that just earlier this week, he could brush really well, but got confused when he was told to rinse. He'd just start brushing again. I'd point out that he's really really stubborn, but this is related to the stroke. Either way, he's now rinsing without much confusion.
All-in-all his ability to take care of his own hygiene needs is improving better than expected. He's determined to do everything himself, however he'll always need some assistance, or at least special accomodations as it relates to showering, etc. We've all seen those shower seats, or something like them. He just needs a shower that's easy to get into, and then some safe way to sit down while he bathes.
Kimmie, the speech therapist followed occupational therapy. She said that his cognitive expression is suffering right now. Same stuff I've been saying, only more technical. He gets frustrated with his inability to put his feelings, wishes or thoughts into the right words. He is saying many more 'real' words than the jargon he was using at first. She encouraged him to focus on using one or two words to convey what he wanted to say. Oddly enough, he still insists on forming complete sentences.
I'll insert this as it's appropriate for the context, but my eldest daughter called shortly after the meeting came to an end. She does this everyday when getting home from school. I used the opportunity to put Dad on the phone. He talked to her only briefly, but I was surprised how much of it I could understand. What really made me smile was the bubbly voice on the phone when Dad handed it back to me, "DAD, I COULD UNDERSTAND EVERYTHING HE SAID TO ME!" Her enthusiasm was infectious, to say the least.
As a wrap-up, the case worker "Ruth" ran through their recommendations. They still recommend a 24-hour skilled nursing facility at this time. He's close, but still needs help with most daily functions. He shouldn't be left alone, for sure. If not a 24-hour facility, some sort of an adult daycare, or in home aides to assist with his daily needs.
Dad disagrees, and wants to go home immediately. The center is keeping him through the weekend, so we need a definitive plan by Monday. I don't really know for sure what we're going to do at this time. We plan to talk about it more the next few days. It was a good meeting, and certainly encouraging to the family, if not a little disappointing for Dad himself. He still wants to go home. Obviously, sooner than later.
Leading off the discussion was Ruth, the nurse or assistant to Dad's doctor while at Jim Thorpe. She said that everything relating to his medical condition was good. She went through a variety of medications explaining why each was prescribed. It's kind of funny to think of Dad on Ritalin, but it's actually a common prescription for brain injury patients. Helping to concentrate, etc. They also have him on anti-seizure medication. While I'm unaware of Dad suffering from any seizures, it's fairly common for brain injuries.
In terms of the anti-seizure medication, it makes me think of that old joke. The one about the elephant repellent system. Guy goes on about how well it works, other guy says something about there not being any elephants in town, first guy remarks about how well it works.
Second up today was the physical therapist. Dad is walking better, although he clearly (as is to be expected) is suffering from muscle atrophy on his right side. He actually walked 200' with a hemi walker. I think it's a hemi walker. It's smaller than what you typically picture, and designed for someone using only one arm. So, the 200' is good, but Dad is still largely ignoring his right side without encouragement. They kept referring to it as motor planning, awareness, etc. With a little help, he can get out of his wheelchair. With a little more help, he can walk reasonably well, but not quite well enough to go unassisted.
The really good news at this point in the meeting was the consensus among all of the center employees that Dad would continue to progress for another 6 to 12 months. They couldn't say how far he would get, or what limitations would remain. But it was very good news to know that he hasn't reached those limitations yet.
The occupational therapist "Doni" was up next. She really emphasized the "re-directing" and the motor planning issues. Things as simple as brushing your teeth. She said that just earlier this week, he could brush really well, but got confused when he was told to rinse. He'd just start brushing again. I'd point out that he's really really stubborn, but this is related to the stroke. Either way, he's now rinsing without much confusion.
All-in-all his ability to take care of his own hygiene needs is improving better than expected. He's determined to do everything himself, however he'll always need some assistance, or at least special accomodations as it relates to showering, etc. We've all seen those shower seats, or something like them. He just needs a shower that's easy to get into, and then some safe way to sit down while he bathes.
Kimmie, the speech therapist followed occupational therapy. She said that his cognitive expression is suffering right now. Same stuff I've been saying, only more technical. He gets frustrated with his inability to put his feelings, wishes or thoughts into the right words. He is saying many more 'real' words than the jargon he was using at first. She encouraged him to focus on using one or two words to convey what he wanted to say. Oddly enough, he still insists on forming complete sentences.
I'll insert this as it's appropriate for the context, but my eldest daughter called shortly after the meeting came to an end. She does this everyday when getting home from school. I used the opportunity to put Dad on the phone. He talked to her only briefly, but I was surprised how much of it I could understand. What really made me smile was the bubbly voice on the phone when Dad handed it back to me, "DAD, I COULD UNDERSTAND EVERYTHING HE SAID TO ME!" Her enthusiasm was infectious, to say the least.
As a wrap-up, the case worker "Ruth" ran through their recommendations. They still recommend a 24-hour skilled nursing facility at this time. He's close, but still needs help with most daily functions. He shouldn't be left alone, for sure. If not a 24-hour facility, some sort of an adult daycare, or in home aides to assist with his daily needs.
Dad disagrees, and wants to go home immediately. The center is keeping him through the weekend, so we need a definitive plan by Monday. I don't really know for sure what we're going to do at this time. We plan to talk about it more the next few days. It was a good meeting, and certainly encouraging to the family, if not a little disappointing for Dad himself. He still wants to go home. Obviously, sooner than later.
Wednesday, April 1, 2009
Looking for inspiration
Another transition is closing in on us very quickly. The center has announced that Dad has reached the end of his rehabilitation with them. His last night will be Thursday, and we'll be moving him Friday.
You'd think that was good news. As Dad is still in need of almost constant care, it presents a rather substantial hurdle to taking him home. The center is recommending a 24-hour facility where he can continue to rehabilitate for another 100 days. 100 days is the magic number that the medicare system has placed on this phase of his recovery.
At this time, we're still weighing all of our options. We'd all like to bring Dad home now, but are trying to be realistic as we face our own limitations in providing the care he continues to need today. It looks like we're going to spend a little time with counseling staff from the center tomorrow. We need to ask more questions and get a realistic idea of what is and is not possible at this time.
Hang in there Dad. We're trying.
You'd think that was good news. As Dad is still in need of almost constant care, it presents a rather substantial hurdle to taking him home. The center is recommending a 24-hour facility where he can continue to rehabilitate for another 100 days. 100 days is the magic number that the medicare system has placed on this phase of his recovery.
At this time, we're still weighing all of our options. We'd all like to bring Dad home now, but are trying to be realistic as we face our own limitations in providing the care he continues to need today. It looks like we're going to spend a little time with counseling staff from the center tomorrow. We need to ask more questions and get a realistic idea of what is and is not possible at this time.
Hang in there Dad. We're trying.
Monday, March 30, 2009
Watching basketball
I got my game yesterday. I mentioned a little ways back how much I've enjoyed watching basketball with Dad. I got to do it again yesterday. Mom worked out that day pass I mentioned in an earlier post, and Dad got to come home for a little while.
He arrived an hour or so before the game, and got a quick trip around the house with help from my brother. He was anxious to show Dad all the work he had accomplished during Dad's stay in the hospitals. I heard Dad very clearly stating "wow." Quite a few of them, to be honest. He was clearly happy with what had transpired in his absence.
It didn't take long for him to tire, so Dad only caught the 2nd half of the game. I'm not sure that he didn't get the best nap he's had in a while, as he was able to sleep on his own bed. I'm not sure how often we checked on him during that brief time. You'd have thought someone had a newborn in the house. Regardless, it was good to sit next to him and exchange a rather clumsy high five during one point late in the game. Funny, now that I think about it. There wasn't nearly as much complaining during this loss as you would have witnessed earlier in the season.
My sister supplied us all with chocolate shakes from Wendy's. Since the frosty has become Dad's primary source of nutrition the last week or so, she felt like it seemed fitting that we all eat along with him. He seemed pleased by the sentiment.
I also witnessed him moving his right hand. The movement required intense focus, and it was little more than extending his fingers, and then subsequently squeezing them into his palm. But it was more than I've seen in the last 5 weeks. At this point, you'd have to describe any real motion on his right side in that same manner. It requires great focus and effort. I don't know what the future will bring along these lines. It's nice to imagine him fully mobile again, and able to use his hand as he used to. I don't know if that's realistic, but I'm hopeful for his sake that he'll go as far as he wants.
It was a good day. A nice afternoon spent relaxing with family, watching sports, and eating horribly fattening foods. The kids were running through the house, lots of joyful screaming and giggling. Everyone was relaxed, and Dad was happy. I'm told that he continued that frame of mind as he returned to the clinic. Hopefully with more motivation to rehabilitate and return for good.
He arrived an hour or so before the game, and got a quick trip around the house with help from my brother. He was anxious to show Dad all the work he had accomplished during Dad's stay in the hospitals. I heard Dad very clearly stating "wow." Quite a few of them, to be honest. He was clearly happy with what had transpired in his absence.
It didn't take long for him to tire, so Dad only caught the 2nd half of the game. I'm not sure that he didn't get the best nap he's had in a while, as he was able to sleep on his own bed. I'm not sure how often we checked on him during that brief time. You'd have thought someone had a newborn in the house. Regardless, it was good to sit next to him and exchange a rather clumsy high five during one point late in the game. Funny, now that I think about it. There wasn't nearly as much complaining during this loss as you would have witnessed earlier in the season.
My sister supplied us all with chocolate shakes from Wendy's. Since the frosty has become Dad's primary source of nutrition the last week or so, she felt like it seemed fitting that we all eat along with him. He seemed pleased by the sentiment.
I also witnessed him moving his right hand. The movement required intense focus, and it was little more than extending his fingers, and then subsequently squeezing them into his palm. But it was more than I've seen in the last 5 weeks. At this point, you'd have to describe any real motion on his right side in that same manner. It requires great focus and effort. I don't know what the future will bring along these lines. It's nice to imagine him fully mobile again, and able to use his hand as he used to. I don't know if that's realistic, but I'm hopeful for his sake that he'll go as far as he wants.
It was a good day. A nice afternoon spent relaxing with family, watching sports, and eating horribly fattening foods. The kids were running through the house, lots of joyful screaming and giggling. Everyone was relaxed, and Dad was happy. I'm told that he continued that frame of mind as he returned to the clinic. Hopefully with more motivation to rehabilitate and return for good.
Thursday, March 26, 2009
Stabbed in the eye with a fork
That popular phrase comes to mind when thinking of Dad this morning. Even though we knew he was concerned about losing his vision to macular degeneration, I think we might have underestimated his passion. He was so greatly relieved to learn that he was going to the eye doctor this morning, that he has been described as renewed and invigorated.
Mom and my brother picked him up this morning, and escorted him to the eye clinic, where I'm sure he'll undergo another of the injections that he's received monthly for the last few years. The same injections that he credits with saving his vision. They aren't a cure, but have been an effective treatment for retaining what vision he has left. To put things in perspective, Dad has been such an involved and beloved patient of the clinic, that his eye doctor came to the hospital and visited Dad while he was still in the ICU.
I didn't really go into detail, but those injections are given to him in his eye. Yes, you heard me right. Dad looks forward to going to the clinic for an injection IN HIS EYE. In all fairness, I'm sure he'd speak up here and tell us that the treatment is better than losing his vision.
Dad received another visit from the clinic psychiatrist, as well as an evaluation from the therapists. I haven't heard anything from the psychiatrist, but the therapists have seen enough of an improvement over the last week that they have agreed to keep him in the center for another week. That's certainly good news as it relates to Dad making more progress in such a positive environment.
Finally, Dad has also received a "day pass" to visit his house this Sunday. It's a good opportunity for him to feel alive again, and to see the progress made on his home remodel over the last 5-6 weeks. I'm told that he was thrilled with the news. I'm sure in some small way it serves to validate what we've been trying to get through to him: that message of rehabilitation and recovery and a chance to one day come home.
Mom and my brother picked him up this morning, and escorted him to the eye clinic, where I'm sure he'll undergo another of the injections that he's received monthly for the last few years. The same injections that he credits with saving his vision. They aren't a cure, but have been an effective treatment for retaining what vision he has left. To put things in perspective, Dad has been such an involved and beloved patient of the clinic, that his eye doctor came to the hospital and visited Dad while he was still in the ICU.
I didn't really go into detail, but those injections are given to him in his eye. Yes, you heard me right. Dad looks forward to going to the clinic for an injection IN HIS EYE. In all fairness, I'm sure he'd speak up here and tell us that the treatment is better than losing his vision.
Dad received another visit from the clinic psychiatrist, as well as an evaluation from the therapists. I haven't heard anything from the psychiatrist, but the therapists have seen enough of an improvement over the last week that they have agreed to keep him in the center for another week. That's certainly good news as it relates to Dad making more progress in such a positive environment.
Finally, Dad has also received a "day pass" to visit his house this Sunday. It's a good opportunity for him to feel alive again, and to see the progress made on his home remodel over the last 5-6 weeks. I'm told that he was thrilled with the news. I'm sure in some small way it serves to validate what we've been trying to get through to him: that message of rehabilitation and recovery and a chance to one day come home.
Wednesday, March 25, 2009
24 hour care
That's the phrase that keeps repeating in my head today. The phrase passed on to my mother shortly after Dad arrived at the rehabilitation center. In other words, he won't leave there ready to re-enter his life at home. Looks like we have some tough decisions up ahead.
I talked to him about it candidly last night. Hoping that he could take in the larger picture relating to his recovery. Our own inability as a family to take care of his current needs in the home setting at this time, and the required daily sessions of therapy and rehabilitation. His time at the center is coming to an end. There is some question to precisely how much time is left, it could be a few days, maybe a week. What do we do after the rehab center? We're exploring options, but I don't know that any of those options will include bringing him home at this point in time.
Depression, denial and dignity. The 3 d's currently occupying most of Dad's life. I don't know that denial is a fair word, but it's tough to completely understand what he's thinking or how he feels. It's clear that he wants to leave the center, he made that perfectly clear once again last night. Perfectly clear. I think he views the center as the source of his frustration. The center, and his family. I know that he's feeling abandonment, when ironically, we're a bigger part of his life now than we have been in the last 20 years.
The plan for today includes tracking down his doctor and learning more about their treatment of his depression. I think I explained in an earlier post that depression is normal in aphasia cases. It can be temporary or permanent, but either way it slows down recovery. He's been receiving some level of medication, but I don't think it's working. The charge nurse recommended a visit by the psychologist last night. Mom is going to follow-up today on several fronts. First, she's going to contact the eye doctor that has been treating Dad for the last few years. You can imagine his concern about losing his vision in a world where so many other senses are currently failing him. She's also going to follow-up on the depression front, and see what they recommend. Maybe one or both of these avenues will provide him with more hope and a better chance at returning home soon.
...
I watched Dad eat some chocolate last night. No, not pureed or mashed or chopped up, or any of that stuff. Solid, sweetened chocolate. Apparently, this isn't the first solid food that he's had in the last day or two. Looks like we're approaching the day when I have to make good on my promise and bring in some real food. I'm sure there are still rules, and I'll abide by those. But I'm excited to feed him something a little more appetizing.
I talked to him about it candidly last night. Hoping that he could take in the larger picture relating to his recovery. Our own inability as a family to take care of his current needs in the home setting at this time, and the required daily sessions of therapy and rehabilitation. His time at the center is coming to an end. There is some question to precisely how much time is left, it could be a few days, maybe a week. What do we do after the rehab center? We're exploring options, but I don't know that any of those options will include bringing him home at this point in time.
Depression, denial and dignity. The 3 d's currently occupying most of Dad's life. I don't know that denial is a fair word, but it's tough to completely understand what he's thinking or how he feels. It's clear that he wants to leave the center, he made that perfectly clear once again last night. Perfectly clear. I think he views the center as the source of his frustration. The center, and his family. I know that he's feeling abandonment, when ironically, we're a bigger part of his life now than we have been in the last 20 years.
The plan for today includes tracking down his doctor and learning more about their treatment of his depression. I think I explained in an earlier post that depression is normal in aphasia cases. It can be temporary or permanent, but either way it slows down recovery. He's been receiving some level of medication, but I don't think it's working. The charge nurse recommended a visit by the psychologist last night. Mom is going to follow-up today on several fronts. First, she's going to contact the eye doctor that has been treating Dad for the last few years. You can imagine his concern about losing his vision in a world where so many other senses are currently failing him. She's also going to follow-up on the depression front, and see what they recommend. Maybe one or both of these avenues will provide him with more hope and a better chance at returning home soon.
...
I watched Dad eat some chocolate last night. No, not pureed or mashed or chopped up, or any of that stuff. Solid, sweetened chocolate. Apparently, this isn't the first solid food that he's had in the last day or two. Looks like we're approaching the day when I have to make good on my promise and bring in some real food. I'm sure there are still rules, and I'll abide by those. But I'm excited to feed him something a little more appetizing.
Sunday, March 22, 2009
Change of pace
Dad can lift his right leg. I did a double take the first time he did it, I honestly thought my eyes were playing tricks on me. It started when his oldest brother stopped by for a quick visit. He was tell Dad about his own stroke, and subsequent full recovery. You could tell that it took a great deal of concentration and focus, but sure enough, he was able to lift it around one foot off the bed.
The whole visit was better Saturday. Actually, the whole weekend seems to have been better than the preceding weekdays. Don't get me wrong, he's a far cry from being captain happy, but he seems to be in a better place than before.
We arrived shortly after 2 pm today, and Dad was sitting up in bed in obvious discomfort. He was slumping over, and struggling to explain the source of his distress. He alternated between grabbing his forehead and his chest. I won't go through the litany of disorders that ran through my mind, I'm sure similar things are going through yours as well. Frustrated, I called for backup: Mom and his nurse.
The nurse did a quick vitals check, and put the worst of my fears at rest. After more questions, Dad agreed rather emphatically to a drink of water. And then another. Following that was a third and fourth container of lemon flavored water, the consistency of honey. So, there you go, he was thirsty. Beyond thirsty actually, it looks like he was dehydrated.
After the first pudding cup sized glass of water, Dad felt well enough to move from the bed to the wheelchair. And it was from the wheelchair that he stayed as more guests arrived. It wasn't long before we had a room full.
Dad seemed to enjoy the company, I think it lifted his spirits. Eventually he conceded to being tired, so we helped him back to the bed and left shortly afterwards. As sad as it was leaving, it was good to see him happy and surrounded by laughter.
The whole visit was better Saturday. Actually, the whole weekend seems to have been better than the preceding weekdays. Don't get me wrong, he's a far cry from being captain happy, but he seems to be in a better place than before.
We arrived shortly after 2 pm today, and Dad was sitting up in bed in obvious discomfort. He was slumping over, and struggling to explain the source of his distress. He alternated between grabbing his forehead and his chest. I won't go through the litany of disorders that ran through my mind, I'm sure similar things are going through yours as well. Frustrated, I called for backup: Mom and his nurse.
The nurse did a quick vitals check, and put the worst of my fears at rest. After more questions, Dad agreed rather emphatically to a drink of water. And then another. Following that was a third and fourth container of lemon flavored water, the consistency of honey. So, there you go, he was thirsty. Beyond thirsty actually, it looks like he was dehydrated.
After the first pudding cup sized glass of water, Dad felt well enough to move from the bed to the wheelchair. And it was from the wheelchair that he stayed as more guests arrived. It wasn't long before we had a room full.
Dad seemed to enjoy the company, I think it lifted his spirits. Eventually he conceded to being tired, so we helped him back to the bed and left shortly afterwards. As sad as it was leaving, it was good to see him happy and surrounded by laughter.
Thursday, March 19, 2009
Responding to loss
Dad was asleep when we arrived tonight. It was good to see him sleeping soundly, but also made me more aware of how vulnerable he looks. I hate to think about how much weight he must have lost. And it isn't like he had a lot to work with beforehand.
If you didn't know my father as a youngster, you might be surprised to know that he was once overweight. Like everything else in his life, when he made the decision to lose weight, he simply did. Nothing fancy, no miracle diets, just the internal will and determination to change who he was. To become what he wanted.
I was anxious to visit with him after the last visit. I'd heard of a good visit yesterday, and selfishly wanted to experience some of that myself. But I didn't want to wake him up just to suit my selfishness.
He woke up anyway, and through a drowsy gaze greeted us appropriately. We helped him become comfortable through adjustments in bed, shifting around the covers, and providing him with this crazy sponge thing that functions as a makeshift toothbrush/tongue scraper.
Eventually, he took my arm and began to try and communicate. He was desperate that I understand his wishes. It took some time, and a little help from my brother to fully comprehend.
He wants to go home.
...
Officially, there are 5 stages of grief as it relates to a significant loss in your life:
Denial and Isolation
Anger
Bargaining
Depression
Acceptance
...
I'm no expert on anything emotional. The running joke around my house is "my husband with the cold dead black heart." So, I'm obviously at a loss to fully explain Dad's feelings or where he's at emotionally. It's clear that Dad is working through his loss at this time.
There is a paper on the wall that talks about patients with aphasia and how to interact with them. I don't remember everything on the list, but it all seemed fairly common sense:
Talk directly to them.
Loss of speech isn't a loss of intelligence.
Loss of speech isn't always an inability to understand.
Ask them questions that can be answered with a "yes" or "no."
I think I've heard the term before, but tonight was the first time I've seen "aphasia" applied to Dad.
Aphasia: loss of the ability to produce and/or comprehend language, due to injury to brain areas specialized for these functions, such as Broca's area, which governs language production, or Wernicke's area, which governs the interpretation of language.
I listened intently to everything that Dad had to say. I was honest about the need to stay at the center, and our inability to care for him at home at this time. I promised to talk with my mother and siblings about his care. I acknowledged that ultimately the decisions about his care were up to him.
I think what I witnessed tonight was Dad going through the stages of grief. I hope that what I witnessed tonight was Dad's unwillingness to accept his current situation, and the beginnings of him fully committing himself to rehabilitation.
If you didn't know my father as a youngster, you might be surprised to know that he was once overweight. Like everything else in his life, when he made the decision to lose weight, he simply did. Nothing fancy, no miracle diets, just the internal will and determination to change who he was. To become what he wanted.
I was anxious to visit with him after the last visit. I'd heard of a good visit yesterday, and selfishly wanted to experience some of that myself. But I didn't want to wake him up just to suit my selfishness.
He woke up anyway, and through a drowsy gaze greeted us appropriately. We helped him become comfortable through adjustments in bed, shifting around the covers, and providing him with this crazy sponge thing that functions as a makeshift toothbrush/tongue scraper.
Eventually, he took my arm and began to try and communicate. He was desperate that I understand his wishes. It took some time, and a little help from my brother to fully comprehend.
He wants to go home.
...
Officially, there are 5 stages of grief as it relates to a significant loss in your life:
Denial and Isolation
Anger
Bargaining
Depression
Acceptance
...
I'm no expert on anything emotional. The running joke around my house is "my husband with the cold dead black heart." So, I'm obviously at a loss to fully explain Dad's feelings or where he's at emotionally. It's clear that Dad is working through his loss at this time.
There is a paper on the wall that talks about patients with aphasia and how to interact with them. I don't remember everything on the list, but it all seemed fairly common sense:
Talk directly to them.
Loss of speech isn't a loss of intelligence.
Loss of speech isn't always an inability to understand.
Ask them questions that can be answered with a "yes" or "no."
I think I've heard the term before, but tonight was the first time I've seen "aphasia" applied to Dad.
Aphasia: loss of the ability to produce and/or comprehend language, due to injury to brain areas specialized for these functions, such as Broca's area, which governs language production, or Wernicke's area, which governs the interpretation of language.
I listened intently to everything that Dad had to say. I was honest about the need to stay at the center, and our inability to care for him at home at this time. I promised to talk with my mother and siblings about his care. I acknowledged that ultimately the decisions about his care were up to him.
I think what I witnessed tonight was Dad going through the stages of grief. I hope that what I witnessed tonight was Dad's unwillingness to accept his current situation, and the beginnings of him fully committing himself to rehabilitation.
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