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Difficult week

Ethyl17

Entry posted by Ethyl17

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Bruce and I are good. Nice plateau to be on, but tough week.

 

On Monday, I was informed that Bruce would have to go back to the long leg brace. A set back? maybe. We tried the brace at PT's suggestion. Of course, she put it on wrong. One look at Bruce's face an I knew. Why is it always on me? We have appointment with brace man-one of Bruce's old high school students-on Friday to check for fit and adjustment.

 

He is currently using AFO and back to hemi. Yes, I knew there would be set backs, he has done virtually nothing for a year. But going back into the long leg brace may also upgrade him back to the quad cane.

 

Ok, so I expected that. Lexi thinks she can keep him in therapy until the next round of Botox, February 27th and keep your fingers crossed that she can sell this to the Insurance Company! They are working on transfers-except he can't put his own shoes on-and walking.

 

Recovery here at home, much improved. We now have Cathy and Leo. Leo will not swim and Cathy can't drive a five speed. Bruce will not do any personal grooming with a caregiver, so I basically have very well-paid sitters and housekeeping help. But cognitively Bruce is so improved and the incontinence only remains overnight and when Bruce gets stubborn with Cathy or Leo.

 

I have so fought this for 34 months, was told after a year he would not improve. But with medication adjustment and much work here, I have not had a linen change in weeks. I consider all the priorities we all set, as caregivers, all on different pages.

 

Mary Beth is at odds. Her mother-in-law passed two weeks ago and the family is in an uproar. You all know how supportive she has been of me. This is long distance and hubby needs to make a trip to family home and an appointment with the lawyer. He does not like that, but it has to be done and I can only advise and be supportive from here.

 

I crashed the computer today at work and of course, because I have no free time, had to leave to relieve the caregiver, leaving my fellow nurses in a mess, am feeling guilty about that.

 

Bruce's college roommate called. His daughter's prognosis is good. Yes, she is very depressed but Mom is there for the better part of this week, setting up home care and hubby has been approved for Family Medical Leave. I did not tell Bruce until Sunday morning, after I heard from Mom and the other roommate. He cries a lot. Lucinda was his first baby and they were close.

 

In the meantime, we have a busy week. I also think Mother Nature will be blessing us with a true New England winter on Monday. Yes, I am thankful for the delay. But that also puts more pressure on having the ducks in a row before Monday and all I want is a morning in to sleep past 5:30am. Tomorrow with PT at 8:30am will not be it-lol.

 

Good week all. And hope we all enjoy Super Bowl. Debbie

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RLT

Debbie, It does seem the name of the game is gain some lose some but it is amazing the improvements that can come even years post-stroke. I have been recommended to back off a bit on Dick. He, even with dementia, has learned how to manipulate the staff at the nursing home to get me to come in! Sounds like Bruce may do that a bit as well. I got mad the other day and later felt dreadfully guilty. BUT it made an amazing improvement in Dick's cooperation. Just somethng to think about.

Ruth

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fking

My best to you and Bruce and hope you get the computer back up and running soon! Yea, I'm waiting for the Superbowl play and for the new Ads that will be shown at 116,000 dollars a second. I imagine many of them are at least 2 minutes or longer! What a waste of money but advertising pays the bills with millions of people watching world wide! I hoping New England wins this one!

Fred!

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thejule1

Debbie, It does seem the name of the game is gain some lose some but it is amazing the improvements that can come even years post-stroke. I have been recommended to back off a bit on Dick. He, even with dementia, has learned how to manipulate the staff at the nursing home to get me to come in! Sounds like Bruce may do that a bit as well. I got mad the other day and later felt dreadfully guilty. BUT it made an amazing improvement in Dick's cooperation. Just somethng to think about.Ruth

We were talking about "getting mad and making our spouses do more" in chat the other night. I think it does help (without being mean or nasty of course). Larry gets the message and seems to be more cooperative. Sometimes you don't know when to push or let go.

 

Julie

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fking

Debbie,

 

If you send me an email, not thru stroke net, your email address straight to you then I can send you some of the Slave topics my oldest niece gathered for me. that my dad was involved in and with. She knows much more about those years than me. She sent me an email I can forward to you only.I have never been to public about this topic. Please understand! I told you I would get back to you after the new year, OK? Hope you see this soon!

Fred!

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ruthpill

Debbie,

I have the same problem. Very well paid sitters and light house keeping. But, they are needed. I hope that Bruce adjusts to his new leg brace. Hopefully the long leg brace will be temporary. Bruce has come such along way. It is just hard to see. But, I can tell you from the time that you came on line to now. Significant strides have been /made. Progress is just soooo slooooow. But, it keeps coming. Cognitive is so important and the incontinent problem.

Keep up the good work. I just don't take no as an answer. Yes, there will be improvement. Be it ever so slight.

 

Ruth

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Guest hostwill

Guest hostwill

Posted

I too used an AFO for many years and have upgraded to a long leg brace because my knee hyper extends and causes the knee to snap back. Since using the KAFO my gait and stamina have greatly improved. Never give up!

-Will

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swilkinson

Debbie, although it seems like it is one step forward and two steps back sometimes you and Bruce seem to be mostly moving forward now. I am so glad to know he is finally making an effort for you and ensuring his own future independence at the same time.

 

Hope to be in chat on Tuesday computer permitting.

 

Sue.

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