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What a Survivor wants


Ethyl17

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So, a horrid week. Do I ever have anything other? The advice I have been given by people who I trust and who love us was to let Bruce call the shots about what he is willing to do to recover. We got home Friday after therapy and the news that they were weaning him off around two PM. TV went on. The only thing I did was help when asked and provide food. The TV was on for 48 hours. He lied down in bed twice: once for 2 1/2 hours and once for 2 hours. His right foot and hand after the 48 hours were the size of footballs and he was literally in a coma. But he called the shots. OK so enough is enough. We make out a list of those things that he must accomplish every day: Eat, Estim, feed Kira, help with all meals, etc. I am not sitting by while this vital man throws his life away or comprises his health with congestive heart failure. I had a terrific day planned for Sunday: Car Show which he loves and lunch reservations at an outdoor Mexican restaurant that we both love. Weather was perfect. We made the car show and halfway through he wanted to go home. Said put me to bed and that lasted one hour. Monday new regime. Everything on the list he must do including walking to every room where these activities occur. Tonight was his first live Stroke Support group at our Rehab. The therapist spent extra time with him as he was the new guy and the members offered all kinds of help and support. Bruce says he will go back: once a month. And next time I will drop him and leave the room. He communicated very well and even offered insight, so he does not need me to be there except for bathroom assistance and probably will do better with me not there. He has agreed to start with a Stroke Psychologist starting next week. Went to work for 4 1/2 hours this week, fell asleep at his desk, they called me, I picked him up and he had lunch and said help me to bed, where he lasted 10 minutes. Went to sleep last night at 9 pm, woke up at 11:30 pm and has been awake since. Therapy today and then the group, finally went to sleep at 9:15 pm after we argued for him not to get overstimulated by the TV again. Some good, some bad. In all fairness, he made a terrific dinner and said he enjoyed doing it, but couldn't wait to get back to the TV. Continence has been hit and miss, but mostly I must say hit. He's considering going to work two days next week. His boss reports his work is excellent. OK so here is the dilemma: one of his very best friends, someone I thoroughly trust and only loves Bruce, but speaks his mind said maybe I "over-emphasized" physical recovery during these 14 months and perhaps sent Bruce off onto this path that Bruce did not necessarily agree with. So I have been chewing on that for a few days, you can't go back, and am trying some new stuff where Bruce is an integral part of daily life here in the house. I am angry, exhausted and have decided that given enough time to get him comfortable and mostly independent with just daily existence, I will have to leave. You can not make someone love the life he has been granted

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Debbie, take it easy. You did not over-do his exercise program etc, you used the window of opportunity as best you could to help his recovery. Tell unhelpful friends to butt out unless they want to take over for a week or two while you go to Vegas or the resort of your choice!

 

Any suggestion that any of this is your fault is bunkum. Mostly no-one is at fault, we are just all doing this for the first time with no formal training and no-one mapping out a program for us to follow. You are a good wife and caregiver, you are concerned andloving and left your own career etc behind and have concentrated your energies on Bruce. Bravo!

 

I tell Ray: "50% of this life is mine" so 50% of the time he has to do what I want him to do. Then I let him sit on the verandah or on his favourite chair and do his word puzzles( he is not a tv watcher) or go to bed or whatever. I always say we share one life now as neither of us has a life of our own. Stroke survival past a certain point is like that for those who genuinely do need a caregiver. Joined at the hip is how Ray and I live.

 

Watching our lovely intelligent, handsome, efficient, hard-working men turn into an invalid, a slowly recovering stroke survivor or just someone who takes to their beds is unfortunately part of the post-stroke journey for many of us. I visit a nursing home where people as young as Ray and with less deficits are permanent residents. I tell Ray it is because their primary caregiver could not do the things I do every day for him. And I believe that to be true.

 

Ask Bruce's doctor is there some medication for the insomnia, ask the pharmacist, the PT, OT etc the same question and someone will come up with an answer or a routine or a process that will help. Keep your own routine calm and get as much sleep as you can. You are precious as part of our caring community and we don't want you breaking down too.

 

Sue.

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bbie,

I agree with Sue. You took the opportunity and went for the recovery. I kept hearing that physical recovery at the beginning is very important. yes, I stressed it Again, we are not trained stroke caregivers. We are learning from the seat of our pants. We have to take and an ide and go with it.

 

Yesterday, We attended the funeral of a dear friend. It was a beautiful service. Early in the morning I told William that there was no question we were going to the funeral. I told him that we were going to the pool. There are some non-negotionables. i set these up the night before and stress them again first thing in the morning.

 

William said that he surprised himself yesterday. He did well at the funeral and the luncheon that followed.

 

William used to need a sleeping pill every night. I got 10 mg generic Ambien. I cut it in half and give him one. He would ask for a sleeping pill every night. I let this go on for a few months. Then I cut it down. I told him that he did not need one every night. I would ask him to try to sleep with out one. If he couldn't sleep then I would give him a half of a pill. Now, he doesn't even a sleeping pill at all. I even tried benadryl. He was complaining of allergies and I know that bendryl is a sleeping aid. It did both.

 

I am fortunate that William is usually very tired. I encourage him to sleep when he is tired or else he is cranky.

 

Sitting in a chair will let his legs swell up. William puts his legs up in the recliner. William also loves to watch TV.

 

When I get home at 10P. i encourage william to stay up with me until midnight. That maybe why he is exhausted and falls asleep.

 

You are doing a terrific job.

 

I have found that William needs guidance. If I let him have his way. He would just sleep and sit all day long.

 

Ruth

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