Dave had his follow up CT scan yesterday morning that was going to put my mind at ease that the brain injury he suffered in November was healing well. Well - I should know now to expect the unexpected! We no sooner got home when our phone rang - it was the neurosurgeon's office - I was to take Dave to the emergency room - there were "abnormal findings" and he needed observation. Surprise, surprise.
Dave had a headache beginning Sunday - but he didn't tell me about it. He mentioned it Monday late afternoon - and I knew we had the CT scan on Tuesday, so I suggested we make sure the doctor know about it. Well, turns out he had bilateral subdural hematomas now. On each side of his brain. The blood had apparently been seeping all along. But because of the "room" in his brain with the shrinkage he's already experienced from his FTD, there was quite a bit of buildup before he had the normal symptom of a headache - NOTE TO SELF: Suggest to the medical community that follow up scans be done sooner on someone who already has brain shrinkage due to FTD!!!
So yesterday afternoon, Dave had two burr holes drilled into his head - one on each side - to clean out the blood. The surgery went fine - he has two funny looking drains on each side of his head. His head is wrapped with gauze - he'll have an interesting haircut, I'm sure, when they remove the bandages! At this point, he kind of reminds me of the Breaking Bad guy - a little shaved area showing so far above his beard on each side - not sure what lies under the bandage!
He was scheduled for another CT scan some time over night - to see if there is still bleeding. Not sure what happens if it hasn't stopped. But I guess I'll know later today! Last night he was doing well - eating pizza and ice cream - watching TV - his headache is gone - kind of surprising with two holes in his head!
It's about 6:30 am - just got a call from his nurse from the neuro critical care unit - she said he did well all night - she gave him meds a couple of times for pain - he went at 5:30 for his CT scan - results should be in soon. I'm headed back to the hospital soon.
Silver lining? Well, at least this surgery and the first two days of his hospital stay are in 2014 - and we certainly already have met the out of pocket limit for this year. So my hope is all this new medical expense is covered 100%. Woo hoo!!! Gotta look for the small wins, right?
Wednesday, December 31, 2014
Wednesday, December 24, 2014
Chapter 18 "The more there is of yours, the less there is of mine."
Dave is done with physical therapy this Friday! Yay! And he's allowed to go back to his exercising at the Senior Center. When I gave him a ride for the first time and went in to make sure (at the direction of the physical therapist) he could get on and off the equipment he uses safely, I was so happy to see the response from the people there - they were all so happy to see him, giving him hugs, telling him how worried they'd been about him - it hit me how important that one hour a day is to him - how much the people there really care about him - and how welcome he feels there. It was good. And after spending two weeks with him all day long after his fall, it hit me again how "empty" his life seems to me - just watching game shows and little else. He does not seem to mind - in fact I think he was happy when I went back to work! He could do his thing without me trying to engage him in doing something else.
I've taken family medical leave through all this - part to take care of my husband, and afternoons to help take care of my dad. For the last three weeks, I've worked about fifteen hours a week. Since Thanksgiving, my dad has been declining. It is hard to watch, hard to participate, but I don't think I'd trade it for anything. It has taken more of my time - between Dave's PT, rides to other appointments, afternoons at my dad's, and three mornings a week at work - plus Christmas on top of it! - some days it feels like too much. I love the Christmas season, but this year has been a challenge to fit it in. I've had many people tell me - don't worry - people understand - you've had a lot on your plate - etc., etc., etc. While I know that is true, it doesn't make ME any happier - I want to have the time to enjoy the season, to think about Christmas presents, to decorate, to bake cookies, to wrap presents. I've done all those things - well, except I haven't baked any cookies - but I didn't enjoy them. I feel I'm getting lost in all that's going on. I don't have enough time for work, not enough time for my dad, not enough time for my husband - and not enough time for me. It's made me dream of what life could be - and makes me a little resentful of my situation. I created it myself - and I chose it myself - so I can only blame it on me. I'm the only one who can change it at this point - and seriously - it is not so bad! Ugh. I hate feeling sorry for myself, I hate the feeling I'm inviting "pity" from others. I don't want it to appear I'm out to win the award for the saddest story! I'm a strong person! Things could be SO much worse. Which adds even more to the pity party I'm throwing for myself! Which makes me feel even sorrier for myself! Silly.
It is two minutes til midnight - almost Christmas! I have the tree lights on, and I'm playing the music to Charlie Brown Christmas - all is quiet in my house. The presents are under the tree - the crèche is there, too - this is a Christmas moment for me. A little slice of heaven. It gives me peace - I look forward to it every year. This year has been different - surrounded by life changes - doing it all on my own - Dave just doesn't have it in him to "participate" in the season. At least not the way I'd like him to - not the way he used to. We had SO much fun thinking of gifts for the family and for each other. This year I had to drag him to stores with me - I just got tired of doing it alone - but he usually just wanted to sit in the car. It makes me sad. And it makes me mad. I WANT MY PARTNER BACK! I want to hold hands on the couch, talk about the day, talk about Christmas, talk about my dad, cry on his shoulder, receive some comfort and affection from him. I want him to feel something - to offer an opinion - to want to do something - to be spontaneous - to have an original thought that is normal and appropriate. IT WILL TAKE A CHRISTMAS MIRACLE!
Being home more over the last month - witnessing more of Dave's daily life - I do see more evidence of his disease. Today was the day for garbage to get picked up. So yesterday he put everything out - the garbage, the recycling - but in the span of about an hour and a half, he went out in to the garage twelve times, taking more garbage or recycling out, one can at a time. Six out of seven days of the week, I find the water in the bathroom sink running - sometimes just a small stream - sometimes a pretty decent stream - I've tried to ask him time and time again to stop - take a look at the sink - AND MAKE SURE THE WATER IS OFF! But to no avail. He had a small list of things he needed at the grocery store today - I explained the store was packed - could it wait til Friday? Yes, he thought it could. He had enough shampoo and deodorant and soap to get him through tomorrow - but he still had to mention he needed to go to the store four more times. My patience is wearing thin. And I'm only in the first quarter of all this! So I've enjoyed taking time to think about the things I want to change in my life - my job, which would change my attitude, which would change the feeling of helplessness I have, which would make me happy! Right? Right??? Isn't that how it works? But that seems like SO much effort - and will it effect a change in my life? I just am zapped of energy for now, but so is most everyone I know right now - so - I'll give it a few weeks - see how my dad is doing - he wants to make it to January 1 because he wants to see the Buckeyes play Alabama in the playoffs! He is certain the Buckeyes will win!
Well, time for bed - or Santa won't come! I DO believe, I DO believe, I DO believe!!!!!!!
I've taken family medical leave through all this - part to take care of my husband, and afternoons to help take care of my dad. For the last three weeks, I've worked about fifteen hours a week. Since Thanksgiving, my dad has been declining. It is hard to watch, hard to participate, but I don't think I'd trade it for anything. It has taken more of my time - between Dave's PT, rides to other appointments, afternoons at my dad's, and three mornings a week at work - plus Christmas on top of it! - some days it feels like too much. I love the Christmas season, but this year has been a challenge to fit it in. I've had many people tell me - don't worry - people understand - you've had a lot on your plate - etc., etc., etc. While I know that is true, it doesn't make ME any happier - I want to have the time to enjoy the season, to think about Christmas presents, to decorate, to bake cookies, to wrap presents. I've done all those things - well, except I haven't baked any cookies - but I didn't enjoy them. I feel I'm getting lost in all that's going on. I don't have enough time for work, not enough time for my dad, not enough time for my husband - and not enough time for me. It's made me dream of what life could be - and makes me a little resentful of my situation. I created it myself - and I chose it myself - so I can only blame it on me. I'm the only one who can change it at this point - and seriously - it is not so bad! Ugh. I hate feeling sorry for myself, I hate the feeling I'm inviting "pity" from others. I don't want it to appear I'm out to win the award for the saddest story! I'm a strong person! Things could be SO much worse. Which adds even more to the pity party I'm throwing for myself! Which makes me feel even sorrier for myself! Silly.
It is two minutes til midnight - almost Christmas! I have the tree lights on, and I'm playing the music to Charlie Brown Christmas - all is quiet in my house. The presents are under the tree - the crèche is there, too - this is a Christmas moment for me. A little slice of heaven. It gives me peace - I look forward to it every year. This year has been different - surrounded by life changes - doing it all on my own - Dave just doesn't have it in him to "participate" in the season. At least not the way I'd like him to - not the way he used to. We had SO much fun thinking of gifts for the family and for each other. This year I had to drag him to stores with me - I just got tired of doing it alone - but he usually just wanted to sit in the car. It makes me sad. And it makes me mad. I WANT MY PARTNER BACK! I want to hold hands on the couch, talk about the day, talk about Christmas, talk about my dad, cry on his shoulder, receive some comfort and affection from him. I want him to feel something - to offer an opinion - to want to do something - to be spontaneous - to have an original thought that is normal and appropriate. IT WILL TAKE A CHRISTMAS MIRACLE!
Being home more over the last month - witnessing more of Dave's daily life - I do see more evidence of his disease. Today was the day for garbage to get picked up. So yesterday he put everything out - the garbage, the recycling - but in the span of about an hour and a half, he went out in to the garage twelve times, taking more garbage or recycling out, one can at a time. Six out of seven days of the week, I find the water in the bathroom sink running - sometimes just a small stream - sometimes a pretty decent stream - I've tried to ask him time and time again to stop - take a look at the sink - AND MAKE SURE THE WATER IS OFF! But to no avail. He had a small list of things he needed at the grocery store today - I explained the store was packed - could it wait til Friday? Yes, he thought it could. He had enough shampoo and deodorant and soap to get him through tomorrow - but he still had to mention he needed to go to the store four more times. My patience is wearing thin. And I'm only in the first quarter of all this! So I've enjoyed taking time to think about the things I want to change in my life - my job, which would change my attitude, which would change the feeling of helplessness I have, which would make me happy! Right? Right??? Isn't that how it works? But that seems like SO much effort - and will it effect a change in my life? I just am zapped of energy for now, but so is most everyone I know right now - so - I'll give it a few weeks - see how my dad is doing - he wants to make it to January 1 because he wants to see the Buckeyes play Alabama in the playoffs! He is certain the Buckeyes will win!
Well, time for bed - or Santa won't come! I DO believe, I DO believe, I DO believe!!!!!!!
Thursday, December 4, 2014
Chapter 17 "Well that was the silliest tea party I ever went to! I am never going back there again!"
Finally. At 7 pm, we got to leave the hospital. After a stop to drop off prescriptions, we made it home. Justin and Kristin were waiting there - Dave was helped to his chair, and a big fuss was made over him. Justin actually made the comment that his dad seemed "better" then before he went in the hospital. He was more engaged in conversation with them, and laughing. I hated to burst his bubble, but I think it was only because of all the stimulation in the hospital - he had to constantly answer questions, meet new people coming in, and at the moment he came home, the kids were actually talking to him and asking him questions - engaging him in conversation. If they stop and think, they don't have many topics to discuss with him - his fall and hospitalization presented one - and Dave was kind of liking being the center of conversation where it was all about him. They have seen in the days since that he doesn't have much to say, other then that his head hurts once in a while, and that he won't be able to drive for three to six months.
I had four appointments to schedule with different doctors - primary care physician, neurosurgeon, neurologist, and physical/occupational therapy. I'm not even sure who the neurosurgeon and neurologist are - I assume I met them in the hospital, but maybe not! Different people rotated through each day.
He has slept very well since he's been home. Better then in a long time. Solid eight hours. But his underlying frontotemporal degeneration is causing me some difficulties with him resting like he needs to, and slowly getting back to a normal routine. He seems unable to comprehend that this was a serious injury, and he needs to take it easy. It's not like he had a really active life before, but he was very independent in that he exercised at the Senior Center six days a week, he could go to the grocery store when he wanted, go up and down stairs when he wanted. He could have a beer during an OSU football game. He could run and get himself a candy bar if he felt like it. For the first six days, someone was always with him going up and down the stairs, while he took a shower, while he got dressed - leaning over to get his shoes made his head hurt a lot - he doesn't seem to like being taken care of. I caught him the first day he was home putting his coat on - I asked him where he was going - he said he had to rake the leaves! I suggested he just watch some game shows. He moved slowly before this, but now he is SUPER slow, and a little teetering to the left. Over the course of his eight days at home, he's improved with the balance. Going up and down the stairs is going much better - he's doing one step at a time, like a child does - putting one foot on the step, and the second foot on the same step before going up to the next step. He can carry something in one hand now, while going up and down. He is really taking his time and concentrating - which is a relief.
He had his PT and OT evaluations yesterday at an outpatient facility. The OT evaluation went great - no problems with that - the PT evaluation indicated significant balance problems and risk for falling again. Most concerning was his blood pressure, taken three times during PT. In the hospital, while he was on Dilantin and not taking his blood pressure medicine, his blood pressure was actually pretty good. By last Tuesday, it was about 128 over 80. Yesterday, all three times, it was high - the highest was 167 over 102. EEK! The physical therapist suggested I have his blood pressure taken again last night, and today, and see how it was. She also suggested I call his primary care physician to see if he should be seen earlier then this next Monday. This morning at the little "self serve" blood pressure spot in the grocery store, it was 152 over 97 - after taking his high blood pressure medicine! So I did call the doctor - haven't heard back yet.
We go to PT again tomorrow, and he has exercises to do at home twice a day in between. It's been a long nine days. I can't wait til the appointment on Monday to ask some questions and get a better understanding of what Dave needs over the next few weeks. The spikes in his blood pressure scare me - the abnormal finding of a "hygroma" noted on the discharge papers concerns me - not sure what that means and if anything needs to be addressed with that - when is he "out of danger"? Or is he really not in any danger and he's fine being all on his own all day, FTD and all? Are the "ice pick" headaches normal? I know I'll be sleeping with one eye open for awhile - maybe the week before Christmas when we have another CT scan and appointment with the neurosurgeon, I'll feel better.
In the midst of all this was a wonderful Thanksgiving, with 65 family members all under one roof. My dad made it to the gathering, which was a blessing. We all thought he might not be with us still by Thanksgiving. He was so up, and looked so dapper! And he was so happy to call each of his eleven children (my brother-in-law and my two nieces and one nephew stood in for my sister that passed away) that could make it up to give us a gift - copies of love letters his mother and father wrote to each other in 1901 while they were apart for two weeks just six weeks before they got married. His point to each of us was that our family started years ago with true love. It was truly a first hand view of life 113 years ago. It made me smile to read their proclamations of love for each other. So sweet! And a priceless gift! All the hustle and bustle set my dad back, but he wouldn't have traded it for the world. He's run a fever and been confined to his chair for days now, and we're worried about him making it to each weekend, let alone til Christmas. But, my dad comes from strong stock, and I think he'll continue to rally and have some good months left in this world. For my four brothers and their families that were visiting from out of town, it was very difficult for them to know it may be the last time they would see their father, that they were maybe saying good bye for the last time. Heart breaking. And that's life, right? It happens every day. But as it is happening to us each individually, it's a wonder we can get through it and go on. But I think it's all we can do - if we stop for too long....I don't know what happens then.
So - moving on....
I had four appointments to schedule with different doctors - primary care physician, neurosurgeon, neurologist, and physical/occupational therapy. I'm not even sure who the neurosurgeon and neurologist are - I assume I met them in the hospital, but maybe not! Different people rotated through each day.
He has slept very well since he's been home. Better then in a long time. Solid eight hours. But his underlying frontotemporal degeneration is causing me some difficulties with him resting like he needs to, and slowly getting back to a normal routine. He seems unable to comprehend that this was a serious injury, and he needs to take it easy. It's not like he had a really active life before, but he was very independent in that he exercised at the Senior Center six days a week, he could go to the grocery store when he wanted, go up and down stairs when he wanted. He could have a beer during an OSU football game. He could run and get himself a candy bar if he felt like it. For the first six days, someone was always with him going up and down the stairs, while he took a shower, while he got dressed - leaning over to get his shoes made his head hurt a lot - he doesn't seem to like being taken care of. I caught him the first day he was home putting his coat on - I asked him where he was going - he said he had to rake the leaves! I suggested he just watch some game shows. He moved slowly before this, but now he is SUPER slow, and a little teetering to the left. Over the course of his eight days at home, he's improved with the balance. Going up and down the stairs is going much better - he's doing one step at a time, like a child does - putting one foot on the step, and the second foot on the same step before going up to the next step. He can carry something in one hand now, while going up and down. He is really taking his time and concentrating - which is a relief.
He had his PT and OT evaluations yesterday at an outpatient facility. The OT evaluation went great - no problems with that - the PT evaluation indicated significant balance problems and risk for falling again. Most concerning was his blood pressure, taken three times during PT. In the hospital, while he was on Dilantin and not taking his blood pressure medicine, his blood pressure was actually pretty good. By last Tuesday, it was about 128 over 80. Yesterday, all three times, it was high - the highest was 167 over 102. EEK! The physical therapist suggested I have his blood pressure taken again last night, and today, and see how it was. She also suggested I call his primary care physician to see if he should be seen earlier then this next Monday. This morning at the little "self serve" blood pressure spot in the grocery store, it was 152 over 97 - after taking his high blood pressure medicine! So I did call the doctor - haven't heard back yet.
We go to PT again tomorrow, and he has exercises to do at home twice a day in between. It's been a long nine days. I can't wait til the appointment on Monday to ask some questions and get a better understanding of what Dave needs over the next few weeks. The spikes in his blood pressure scare me - the abnormal finding of a "hygroma" noted on the discharge papers concerns me - not sure what that means and if anything needs to be addressed with that - when is he "out of danger"? Or is he really not in any danger and he's fine being all on his own all day, FTD and all? Are the "ice pick" headaches normal? I know I'll be sleeping with one eye open for awhile - maybe the week before Christmas when we have another CT scan and appointment with the neurosurgeon, I'll feel better.
In the midst of all this was a wonderful Thanksgiving, with 65 family members all under one roof. My dad made it to the gathering, which was a blessing. We all thought he might not be with us still by Thanksgiving. He was so up, and looked so dapper! And he was so happy to call each of his eleven children (my brother-in-law and my two nieces and one nephew stood in for my sister that passed away) that could make it up to give us a gift - copies of love letters his mother and father wrote to each other in 1901 while they were apart for two weeks just six weeks before they got married. His point to each of us was that our family started years ago with true love. It was truly a first hand view of life 113 years ago. It made me smile to read their proclamations of love for each other. So sweet! And a priceless gift! All the hustle and bustle set my dad back, but he wouldn't have traded it for the world. He's run a fever and been confined to his chair for days now, and we're worried about him making it to each weekend, let alone til Christmas. But, my dad comes from strong stock, and I think he'll continue to rally and have some good months left in this world. For my four brothers and their families that were visiting from out of town, it was very difficult for them to know it may be the last time they would see their father, that they were maybe saying good bye for the last time. Heart breaking. And that's life, right? It happens every day. But as it is happening to us each individually, it's a wonder we can get through it and go on. But I think it's all we can do - if we stop for too long....I don't know what happens then.
So - moving on....
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