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One Year gone


Ethyl17

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Well, we are at one year and a day. Last night in chat I was asked if I had looked over any of my journal from last year. I did not keep a journal per se, but daily log: notes, follow ups, goals met, etc. Nothing really organized and none of my own thoughts, fears etc. I am not ready to do that yet, it's still too painful. However after a really bad weekend and some very good advice from here, things seem again in transition. Bruce was on the bike for his arm - no resistance yet, but pedalled the thing for 20 minutes and it wasn't slow or sporadic. He went at a good pace and it was smooth. OT advises his shoulder blade is now moving like it should. I am faithful to his Estim schedule and the few pieces we have here: push-pull type stuff. I explained to him (for the hundredth time) that those exercises can be done while watching TV. Twice this week he actually asked for them. They now sit right next to his spot where he can reach them. Walking is going well. He wears his AFO all day now, so there is no WC'ing around. Cane sits next to him and we walk to kitchen, bathroom, bedroom. Best news is he is now independent in and out of bed to the WC. I am trying those grippy sox he got in the hospital since he can't slide into a shoe on the right without help. We are working on the right foot into a shoe and he is close. I am using his mocassins with the laces out. First time without side rails today for nap, we shall see how the am goes. Bad news is we are now paying for therapy ourselves, insurance ran out. I had already cut Jen and Leo's hours, but Bruce is now only willing to work with them for an hour, then back to TV and I have to pay them for 2 hours. Leo and I had a talk tonight and I probably will have to let both of them go, except for the two days Jen takes him to therapy. I am not yet ready to give up my 2 1/2 hours for myself. My sister suggests that I get a new caregiver, one who is not set and comfortable with Bruce and go back to work now for 2 days - 4 to 5 hours a day. I have been honestly thinking of that and it seems to make sense. As I said to Bruce last week, I have given you all the tools you need to recover, now it is up to you. The "don't argue" advice seems to be working = its only been a few days, but I am keeping my temper in check and walking away when I feel I may lose it. As hard as that is for me, I have to honestly say the angst is much relieved. I was very annoyed tonight and somewhat disappointed when Leo called me down after one hour and said I can not in good faith sit here and watch TV with him on your dime. Bruce said he was only going to work with him for one hour and that was the new arrangement. It takes Leo two hours to get home, so not really worth it for him to come for an hour and I agree. 2 hours a day-seven days a week is worth it, but I had already cut him back to four days a week and now he loses yet another four hours. After he left, I asked Bruce if he wanted to discuss it (it was late in the day, before dinner and I know he was tired) and he said no. I let it go and went and started dinner. So all in all, things are moving forward but certainly not in the manner I thought they would. These blogs will now be a good source to review along the next year.

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:congrats: on one year, there are many, many more to come but the first seem to be the hardest and longest year of your life.

 

I couldn't read your blog, typed all together, but I hope the best for you in the years to come.

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You and Bruce have made significant strides. I can only wish that soon I can have William that independent. yes, caregivers are a problem. Some want to work with the patient.. others just want to sit and talk on the their phones or watch TV.

I know that we have made strides. It has just been so slow.

 

Hang in there.

 

I think that going to work is a good idea. I work, but William's incessant calls are driving me nuts.

 

Ruth

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