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Deck thoughts



I have been thinking the past few days mainly about the condition I was in 17 months ago when I first joined here. I was in a puddle on the floor. Bruce had been home six months. We had finally gotten out of the hoyer, therapies were here at home. Leo and Jen came every day and also worked two hours with him. I was sleeping on an Aerobed and then a $60.00 twin next to his hospital bed. Best advice I got was first year is the hardest and in all fairness, that really extended a bit, but yes, come the 2 year mark, things were just so different.


Fridays are tough. That is my long day in work and currently we are down-sizing and my job is on the block. Financially this is not a problem, but I so love being back, into something just for me. I find that I can honestly remove my mind from sroke, at least for a few hours a day. All I want is one hour down time before being back on the treadmill: dinner, laundry, clean up, bedtime stuff. I know I am tired and short tempered and Bruce does not understand that. So again Friday night bedtime is a battle. I feel guilty I took it out on him. He is confused, knows he feels bad because I do and so the weekend starts on a bad note.



This morning I took my coffee out onto the deck. Bruce is mostly independent with morning routine as long as he is set up and I do that the night before. So many things happened this week: Mary Beth started a new job. She has been out of work for almost two years and while I love that that has meant she can spend more time here, it has been a big stress causer with her husband; Bruce's best friend and my Executor, Bob, was just released from a week long hospital stay. He is a runner, apparently caught a virus which caused some heart and liver involvement. Our dear Carl has called off his wedding.


What amazes me is that I am finally back in the human race. I was able to visit with Bob and Bruce. I showed Bob the new stuff we were working on. My goal, if anything happens to me, is to show Bob that Bruce needs to be kept in his own home, maybe will need full time help, but that Bruce is making great strides towards independence and we are working towards Bruce being able to stay alone at home for a few hours. Carl and I were able to talk for an hour about the problems and emotional responses he is suffering. And Mary and I have been able to chat after Bruce goes to bed about the new job, how she feels, the training, stuff at home.


What I was reflecting on was that I was concerned with things and people outside Stroke. I have time to spend on other people's issues: their pain, successes, joy. It is so nice to not feel that I am neglecting something here. Bruce is dry, fed and comfortable. Funny thing is he is rolling into the BR, telling me he needs pants, shirt. I have accepted that he will never be totally continent and you all know this is a major problem in our house. He knows it causes me much distress but is comfortable enough to explain to me that he knows he screwed up and this is what is required to fix it. I also know and am thankful for all the work Leo has put into this.


Bruce and I worked 50+ hours a week. Friday nights were off nights. Drinks on the deck and then usually take out pizza. Weekends were housework, laundry, groceries for the week, yard work. Those days are past. Yes, I do miss them. I am exhausted when I get out of bed in the morning. I am hoping that too will pass. I know it is depression-my day is not of my choosing. But I fight back. He is watching TV shows or movies, start to finish without the incessant binking during commercials. Today we watched History Channel and a movie. Bruce has agreed to one hour TV off. I don't care what he does, as long as it is not TV. So far two weeks and he pretty much sticks to it. Tomorrow we add another 1/2 hour.


My goal for the upcoming weeks is to take advantage of my time at night. Bruce goes to bed very early and is usually set for the night at that point. I work on my list for the next day, spend some time here, spend some time on the ramp or deck. I am hoping to get a bit more accomplished. Not many of us caregivers have that kind of time to themselves. Part of it is depression, I know that and just being tired, but am hoping that will change soon.


Big week coming up: Neuro appointment-think I will let Jen handle that as nothing has changed in 6 months; his work friends coming for dinner Tuesday and I a planning dinner with my best friend as I missed her daughter's wedding (my Godchild) due to Bob being in the hospital; new Physiatrist. Bruce goes on Medicare in September and they will pay for Botox. I want him set up with new Doc so when the OK comes through, it is OK schedule him now. My friend says only I could think of this. But he is my number one priority and I know how the system works. I just get crazy with all the delays and do my best to problem solve. Bruce's roommate from New Mexico due in on Thursday. I want everything done so we can just enjoy his visit for a few days.


So these have been my musings lately. I am glad it is not all stroke-related. I see healing, moving foreward. And all this is positive. Good week all, Debbie


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Wow Debbie you do seem to be able to enjoy the great gains that have been made in your lives. Of course it is not perfect and never will be but it is important to find those nugets of gold which represent our accomplishments. I can understand how much you must want to keep your job. I often wished there was a alternate life to take me away from full-time care giving. Just like when my oldest kids were young and I took classes at the local college. I came home better prepared to be a good mom. I'm still looking for the time when I am well enough to get a job so all my focus is not always on health issues. You go girl.


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Debbie, congratulations on your new perspective, it is indeed not all about stroke. It is about life, getting up, doing what you have to do, spending time on the things you WANT to do. I do handicrafts, read, bead, come onto the computer. Like you I have my coffee on the deck (front verandah in my case). Life is also about action and reflection, what we do and what we see as important.


Keep on doing what you are doing, Bruce is improving so it is obviously working out well.



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Debbie, isn't it exciting to be able to talk in something other than "hospital-ese"... Sam and I went to an impromptu family pig-pickin' Saturday in Morehead City; it was so nice to see young children playing, parents beaming with pride and joy and getting caught up on everyone else's life. They all knew about Sam, so for once, we were talking about themblahblah1.gif


Like you, I am able to work, and like you, am excited to know that for a few hours I can concentrate on something else as opposed to the next load of laundry, the next meal to prepare, and which meds have yet to be taken.


The small steps that we see each day are but the first steps towards a better life, and that is what we must focus on. I have had to curb my "pollyanna" attitude, at least outwardly, towards Sam. I didn't realize how all that "it'll get better" sounded to him, as translated in his brain post-stroke. That insight came from this board.


Reading your blogs and others, I have learned much that has made our life in this new normal easier to deal with. He cannot tell me what he feels or thinks right now, because he is still trying to figure that out for himself, I guess. The collective wisdom that abounds here is AWESOME!! You-Rock.gif




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Debbie it is so smart of you to have everything in place should something, God forbid, happen to you. I don't know what would happen here, as I am afraid Larry's kids would not be able to handle it, and put him in a nursing home. My son could not handle him alone and work too. Bruce has made progress you can be proud of. I laughed when I read your former post about him speeding across the parking lot from the grocery store in his WC. It is amazing that he shops. Larry has not set foot in the grocery store since his stroke. He didn't shop much before, but he never hesitated to pick something up for me. As I think back, Larry never complained much about anything and never said an angry or ill spoken word about anyone. I think that is still a part of him I so admire and love. I wish his kids showed more support.


Bruce is also very lucky to have such good friends. Have a good week.


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I hope that the depression passes. You will have more energy.

I can tell that Bruce is improving. Yes, I agree with you. It would be best if William was set up at home if something should happen to me. But, he knows that. He has told me that he will not go into a nursing home. He will hire help. So I am not too concerned about his future.


I agree, life is much easier after the two year mark. We are into a routine.


Cognitive strides and physical also.


William gets up at 5A this morning. He asks if it is time to go. I told him that 5:15A is what i am striving for. We made it to the pool at 5:30A and had a great workout. William sits and watches me and then has his coffee. He is now sleeping off.


Who knows what another two years will bring us.



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