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Old 05-10-2012, 05:05 AM   #1
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How long do you hold hope?

Hi again everyone-

In need of some advice. My dad (65 years of age) had a massive stroke 6 months ago. He's been in rehab since then and has learned to walk with minimal assistance. His memory and speech are still in tact. However, he has not learned to transfer from bed to wheelchair and wheelchair to toilet on his own and the PT says it is too risky for us (his family) to walk him to the bathroom. He is coming home Saturday and my mom is beside herself. She feels she'll become a prisoner in her own home caring for him day in and day out. Dad can't even turn to get himself situated on the toilet properly and mom is considering putting him in a home soon. Is 6 months post stroke to early to tell? Or, do we give up and send him away somewhere? Thanks in advance for the responses....

 
Old 05-10-2012, 05:18 AM   #2
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Re: How long do you hold hope?

Hello
I am so sorry for what your dad, you and your family are going through. It is so hard to be the caregiver. Will he continue to improve you ask. Yes if he is given the modivation and the help I truly believe our recovery continues. How much recover will he make, we do not know. I am coming up 2 years since my stroke and I am still making progress. The doctors like to tell you that 3 to 6 months is the cut off point of recover and it is just not true. I get so angry when they say that. I also feel so sorry for people who believe that. Recovery continues as long as there is encouragment and therapy.
Now I know how hard the caregiving is on family. My heart goes out to your mom as she struggles with this decision. If he goes in a home, can this therapy continue? Can he continue to work towards getting stronger or is it possible to get the therapy in the home.
My heart goes out to all of you as you try to make the right decision. It is obvious your love for your dad and wanting the very best for him.
Hope is the presence of faith and believing something greater will happen. Hope is sometimes all we have. It helps us to never give up. Your in my prayers.
God Bless Mulchie

Last edited by Mulchie; 05-10-2012 at 05:23 AM.

 
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Old 05-10-2012, 06:18 AM   #3
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Re: How long do you hold hope?

Thank you Mulchie for your kind words. You are right the doctors do say 3-6 months for recovery and I just don't feel that is true. Dad has made some great progress, he just can't take care of himself on his own. Although we have a caregiver coming over and multiple aides during the day, mom is alone during the evening and weekends. PT will only come once a week too, so we're lacking there. I do believe dad has the motivation, just needs a little help. Do you think doing excercises on his own in bed could help too? His knees are both very weak and won't lock on turns while walking. Thanks again!

 
Old 05-10-2012, 07:00 AM   #4
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Re: How long do you hold hope?

Hello
The physio therapist told me if the muscle is weak then its a good thing because it is a functioning muscle and just needs to be made stronger. Of course you are dealing with the brain and that's the reason why its weak. But he believed you can bring it back. I have gone from wheel chair to walker to cane and sometimes I leave me cane at home. My side was very weak and it has become stronger and stronger. Remember to tell your dad that it is normal for him to feel like he is doing one step forward and two back sometimes. And its normal for symptoms to creep back in when you thought they were gone, especially if he fatiques himself. It seems there is a limit to how much we can stretch ourselves and then our body tells us enough is enough. That doesnt mean you stop it just means you rest and then try again tomorrow. maybe going at things a little slower. Tell your dad that 6 months is not enought to evaluate his recovery. I dont think there is anyone on this board who would not agree. It is a slow and steady progress and something we have to have pacience with ( sorry about spelling) Never Never give up. Tell him Rest is healing, getting in the quiet is healing. The answer to your question should he do exercises in bed YES!!! Find out from physio a program he can do to strengthen those limbs. Gentle and progressional exercise over time can be magnificent. I do yoga strengthen exercises and they can be done in bed or a chair. They have been my saving grace for constant improvement in my balance and strength. Tell your dad not to get discourage and to continue on his journey of recovery. Always thinking and believing he will get there. Set some goals, get professional advice on exercises and move forward. Always always moving forward. Stay positive, and remember we are all pulling for you here on the stroke board.
God Bless Mulchie

 
Old 05-10-2012, 07:06 AM   #5
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Re: How long do you hold hope?

Hello
The physio therapist told me if the muscle is weak then its a good thing because it is a functioning muscle and just needs to be made stronger. Of course you are dealing with the brain and that's the reason why its weak. But he believed you can bring it back. I have gone from wheel chair to walker to cane and sometimes I leave me cane at home. My side was very weak and it has become stronger and stronger. Remember to tell your dad that it is normal for him to feel like he is doing one step forward and two back sometimes. And its normal for symptoms to creep back in when you thought they were gone, especially if he fatiques himself. It seems there is a limit to how much we can stretch ourselves and then our body tells us enough is enough. That doesnt mean you stop it just means you rest and then try again tomorrow. maybe going at things a little slower. Tell your dad that 6 months is not enought to evaluate his recovery. I dont think there is anyone on this board who would not agree. It is a slow and steady progress and something we have to have pacience with ( sorry about spelling) Never Never give up. Tell him Rest is healing, getting in the quiet is healing. The answer to your question should he do exercises in bed YES!!! Find out from physio a program he can do to strengthen those limbs. Gentle and progressional exercise over time can be magnificent. I do yoga strengthen exercises and they can be done in bed or a chair. They have been my saving grace for constant improvement in my balance and strength. Tell your dad not to get discourage and to continue on his journey of recovery. Always thinking and believing he will get there. Set some goals, get professional advice on exercises and move forward. Always always moving forward. Stay positive, and remember we are all pulling for you here on the stroke board.
God Bless Mulchie

 
Old 05-11-2012, 06:44 AM   #6
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Re: How long do you hold hope?

Thanks again Mulchie-I'm trying to keep hope alive and trying to persaude my mother too as well. She's only seeing the negativity of the situation right now (and who wouldn't?) and is getting very down and depressed. I know my dad is working hard in therapy, but in his mind, which obviously, none of us can guess what is going on up there or if we're making sense to him, he thinks that time will heal all. He doesn't seem to want to work to strengthen the muscles in bed on his own. He tells my mom and I we don't understand and that he'll "use all his energy" if he does excercises in bed. Again, does any of this sound familiar? I can't understand his pattern of thought or his reason.

I'll let everyone on the board know come Sunday how bringing him home went. Keep your fingers crossed for him and us!

 
Old 05-11-2012, 06:51 PM   #7
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Re: How long do you hold hope?

Oh my gosh I can so relate to what your dad is say. He will use up all his energy if he does his exercises in bed.
After my stroke my energy was depleted. I only had so much of it and I had to choose how I would spend it. Your dad is saying that. He is making a choice to how he wants to spend his energy. I think thats fantastic that he knows that.
Each day it was like I had a box of beads and each bead was energy. I got up and got dressed That was 3 beads, I brushed my teeth and made coffee that was 3 more beads of energy. If I had company visit that took all my beads and my energy was gone. I had to rest up to replentish it and some days my energy never came back. But the next day I was good to go again with my box filled with beads (energy). I had a doctor tell me "that is a stupid way to describe it and I should use that example again" ( the beads) I think he was wrong because I understood it so there for it was not stupid. I hope you understand what I am trying to explain.
I am very very protective on how I spend my energy still even after 2 years. Dont get me wrong I can do a lot more now but it is always something I am very protective of. Your dad is saying I dont want to spend all my energy doing the exercise and I can soooo relate.
I know its hard to stay positive. Its so hard for caregivers your job is not easy. Good luck on Sunday. I will be watching for your post.
God Bless Mulchie

Last edited by Mulchie; 05-11-2012 at 06:54 PM.

 
Old 05-12-2012, 05:04 PM   #8
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Re: How long do you hold hope?

I imagine that the home setting will do much more for his continued recovery than the experience of being alone in a home.

Have you considered using adult briefs to handle his toileting? I had to put my dad in them at the end of his life, and it was not as bad as you would think, as long as he can accept being changed. With a proper diet, he only had one bm per day, and the wet ones were not a problem at all.

Just an idea, if toileting is the only issue.

I agree with Mulchis, never give up hope! I am none years beyond having 4 strokes, and still find areas of improvement.

Blessings to your family

 
Old 05-15-2012, 04:09 PM   #9
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Re: How long do you hold hope?

"I agree with Mulchis, never give up hope! I am nine years beyond having 4 strokes, and still find areas of improvement."

I also agree with Janet, I am going on 20 years post stroke. still seeing improvements. though much less in the last few years.

how long do you hold hope? forever! just as long as you hold faith. you must hold hope for your dad and have faith in him, and god. hope that he has the determination and desire to get better, remembering, it is what it is and will be what it turns out to be?

your dad has to want to get better and be determined to do so. he needs intensive therapies in order to do that. he has to find it in himself to want/need to be better. even then, it's not so much the intensity of therapy? but then intent of therapy, he needs the mindset that I'm going to do this harder ,try harder and longer, not only to get stronger, but to get better.

a bit about me, my stroke was caused by a work construction accident on November 2nd 1992. I'd spend the next 30 months in the hospital and rehab doing various therapies 8 hours a day 5 days a week on Friday evenings my wife picked me up I went home for the weekend having to be back bu 8 PM. Sunday nights, until March 15th 1995 when I was upgraded to out patent, my wife then picked me up every day after her work, I'd go home every night. the catch a bus at her work each morning to go to therapies every day, learning to walk with a cane,learning to dress and care for myself, making my own meals at least lunch. wife brought me dinners. this wet on until November 12th 1995 that's just over 3 full years of intense therapies. going home for good just me and my wife took a FMLA leave from her job for 6 weeks it's during that time, I adopted my Accept Analyze Adapt motto. I continue doing my exercises on my own with intensity and intent! I intended to walk from my bedroom on Christmas morning cane free as a present to my wife, I set that goal and met it. I had done more in 6 weeks at home on my own, I'm positive! I could not have done this? had my wife put me in a home of some kind, bless her, for being my biggest supporter. along wt the rest of my family and friends. since then, I've been in "official physical therapy" and occupational therapy along with cognitive therapies off and on for probably close to two years a couple months at a time.

I've learned to love myself and love my life as it is. I love what/who I've become. there is no obstacle I can't overcome,if I put my mind to it?

determination breeds progress- progress breeds success- success breeds happiness

good luck and god bless
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Old 05-16-2012, 06:16 AM   #10
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Re: How long do you hold hope?

Dear Coupe
I got inspired all over again at a time when I need a little inspirtation. What a great story. What a great gift you gave your wife that Christmas Morning.
It just goes to show how we can never give up and the improvements continue as long as we never give up. Never stop trying and never stop setting goals for ourselves.
I have been fighting some depression and working towards a better tomorrow has been a struggle lately. But I know it can only get better as long as I never give up. Thanks again God Bless Mulchie

Last edited by Mulchie; 05-16-2012 at 06:17 AM.

 
Old 05-16-2012, 08:12 AM   #11
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Re: How long do you hold hope?

Thanks for all the feedback everyone! I keep trying to encourage my dad with your advice, support and stories, however, he seems to think his stroke was like a sickness and that over time it goes away. We keep telling him to work hard on his own, however, he will not listen. I'm afraid most days he'll just sit idle and won't progress. Not sure what we can say to change his mind.

We're also having trouble with peeing in the middle of the night. He tries to pee in his bedside jug, however, he misses and ends up peeing the bed. It's just like having a baby there. It's all very frustrating at times. Here's to hoping it gets better. We're only on day 3 of him being home...

 
Old 05-16-2012, 02:24 PM   #12
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Re: How long do you hold hope?

Brinsey,

It sounds like you are doing everything right, as your instincts are guiding you. You can never go wrong when you are following your heart and acting with love and care.

When it comes to the nighttime issues, I would encourage you to try him with the depends. They pull on and off just like underwear but will keep the bed and him dry and fresh by morning. For men they are referred to as briefs. My poor daddy started calling them panties, and we all had a laugh about that. We just gently explained to him how much better he will feel through the night, and you simply cannot go through linens every single day. I was surprised how willing my dad was to use them.

I have to agree with Coupe and Mulchie, it does take personal will and the desire to get better. If you can find anything that will inspire him to keep moving, keep thinking and take some pride in, that will be half the battle.

Any kind on hobby he used to do is a place to start. Reading, writing, drawing, gardening, anything to get him interested in life.

We are here for you, and will keep supporting you all the way. That is what we are here for.

 
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