Trying to give back
I have posted before that Bruce has two new fellow stroke survivors in therapy this time around-both left stroke, right affected, like Bruce. We are all close to the same age and us "wives" talk while the men are in therapy.
Both of these men are higher functioning physically than Bruce and both are just at about one year post. Neither, however, can be left alone for too long. One walks independently with the hemi and one independently with a cane. Neither has their hand, but do have arm movement. Both are still in speech and water therapy.
The wives, however, are totally burnt out. Often they go to the lower lounge to nap on the couches there, read or just rest. They leave their schlepps with me, so hubby will know they are still in the waiting area. When I first met these women in January-all well kept, dressed nicely, all smiles. As you all know this Rehab is very agressive and family/caregivers must take part, not to mention the getting there prep. Time is taking its toll.
I remember vividly the time and attention when I first joined here, that was given to me-every night and one always wants to pay back. To show my mentor's that I am willing to pass along their advice, compassion, forgiveness and support. Today they found out from a therapist that Bruce was at 3 years post. They could not get the questions out fast enough.
Biggest thing for both men is back to work. Cognitively, I have no clue; but physically with a ride to and from, that can be done. I explained how difficult it was for Bruce to go to work in that mentally he was frustrated that he could not perform at the same level. Yes, he does good work and our situation is so different. Bruce does not get paid, of course. Is under no pressure, except from himself, to produce. I explained that when he wanted to go, I took him in the WC. Next was the 24-7 caregiver. Neither husband will allow a caregiver. Bruce never had a choice. I trained in PT and OT two days and called to get my caregivers set up. I know I have the background to know home care would be limited and short-lived. These poor families had no clue and now just don't know what to do.
I gave both wives StrokeNet's site and told them to please join. Also the cards at Rehab for their stroke support group, but that is mainly for survivors.
I remember Ruthpill's list from one of William's therapists-16 pages long and Sue's advice to please sleep when Bruce does. What does not help them is that this never ends. Mostly recovery is on the survivor and main caregiver. I explained that we all pick and choose what we can fit in and physically do, along with everything else. What has to be let go and when to call in favors and take people up on offers to help. What was most disheartening I think, was that this doesn't go away. It gets easier and more manageable. I could not bring myself to even mention those of you who have been doing this for a decade or more. But they are smart women and I think they got it. They are getting to MC's "Acceptance." Some here got there sooner than others. LOL.
They asked me if we could meet again on Wednesday, but I train on the EStim bike on Wednesdays. I also explained that I attended most of Bruce's therapies, not always to participate but mostly to learn because Outpatient Rehab also has its end dates. Then it is all on the main caregivers until a new round of therapy is approved. Another solid reason to join here-therapy never ends!
Two quick things on a personal note. This weekend my brother John watched and offered to help me with Bruce. He is trying to be more pro-active with his best friend, Barry, who you all remember stroked last summer. At one point John said to me "Debbie, how long do you think you can do this?" I said "John, as long as I am privileged to."
The other is John's backyard is a concrete patio just off his driveway, perfect for the WC and he has a door into his garage off the patio. I helped Bruce into the garage twice, where he stood-no cane or hemi (had his AFO on), nothing to hold onto; balanced, helped with his pants up and down. You Go Bruce! Good weekend all, Debbie
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