Yesterday was a terrible, terrible day. The PT and OT have decided that dad is no longer steadily improving and therefore not safe to come home and stay on his own (mom works full time and she can't physically lift him). His left arm does not work from the elbow down and his left leg is very weak at the hip and knee, causing him to not be able to walk without being held on to. Never in a million years did I think ten months ago when the stroke happened that we'd be talking about putting dad in a nursing home for the rest of his life. He is still the same person mentally that he always has been and I'm scared to death that a nursing home will break him down slowly but surely. It seems that every person here is or knows someone who has recovered in some way and can learn to go about their lives in some fashion, for which I am so thankful to see as it gives me hope, but I would give anything to have dad recover a fraction of what he has lost so he can spend his remaining years with my mother instead of with complete strangers. In working with the OT/PT in the last three months, he really did improve somewhat. I still firmly believe there is more to be done, but what do I know?
Anyway, my question to the group is: Does anyone know of any resources for caregivers or patients themselves who never recover from stroke (books, experimental treatment, scientific studies, etc)? Any suggestions would be helpful. Also, hearing your personal stories are what has kept me going in the last ten months....any stories of miracles you've miracles you've witnessed would be so nice to hear!
I sure can relate to your, "...never in a million years...." That's how I feel about the fate of my sibling and his strokes. However, that also gave me the strength to fight my stroke.
You are so correct about the demoralizing effect of institutions. But your father has his mind which so, so huge. You can work with him. So maybe he can come home with some help, some accommodations. He will continue to improve much better if he can do some things for himself. The spouse who is left alone has a much harder time. But when there is a spouse who is well enough, there are more possibilities. Just some thoughts to consider.
The following user gives a hug of support to tinam7: coupe (09-17-2012)
20 years, that's music to anyone's ears. It will be 2 for me this Dec. All my energy every day goes into averting another.
The costs are completely through the roof. That's another thing I intend to avoid, though I have yet to figure out how. The cost for my sibling was over 1 mil. Just thinking about this is liable to give me another stroke. There was this case of Tony Nicklinson in the UK. Five long years of torment. For my sibling it was four years. Stroke need not be fatal for a long time. And stroke is, I think, such a mystery because it is the brain.
Now I'll try and think of something cheery: we may live in each moment as perhaps never before taking nothing for granted.
I am so sorry to hear about your dad. When we are going through times like this we sure do feel like the absence of miracles . As you read the posts its clear the amount of love and concern and encouragement is out there. From people going through very tough times in their lives. Its like we all hold hands trying desperatly to pull some comfort from one another and it works. Tiny miracles showing themselves as people reach out and lend a helping hand.
I'm afraid I cant add anything to Larry or tinam7 posts. I did want to answer your post and send my prayers your way. God Bless Mulchie
I know with my father, having a stroke, after surgery no one would take care of him to my mothers standards. Even with him being in a supposedly great facility. So we brought dad home. Mom and I took care of dad for ten years before he passed and I would not change a thing. My father was a kind, quiet man and the hugs from him that I received was payment enough. The therapist had my dad walking with help about 100 feet. She was told by her company that dads services were to be stopped she cried stating that my dad as working harder than 99 percent of the patients she had and he was the most deserving. She lost the fight but to her credit she quit that particular company. It was always a battle for services but for me it was deserved by him. My stroke was three months ago and I have a small taste of what my father went through. Irregardless of what happens assure your father of your love and visit often. He is and will always be a part of you.
Last edited by guyp; 09-20-2012 at 10:32 PM.
The following user gives a hug of support to guyp: Mulchie (09-21-2012)
Well, to me this is another example of a likely genetic cause of stroke. With me it was my brother ahead of me. There are no other strokes in our family. Why us? Someone suggested our parents had recessive genes that combined in us.
Want to add that I developed understanding for my brother's suffering of stroke primarily after mine struck. I so wanted him to fight which it seemed to me he did not do, while I have been a fierce warrior perhaps to make up for him. In truth, of course I don't know. The vast mystery of stroke.
I know that this post was from March, but I hope that you are still reading responses.
My father is in the same predicament. Left side paralysis, limited use of arm, can walk/transfer with SIGNIFICANT help. He has some memory loss and emotional episodes (sadness, anger, rage). My mother does not work, but physically (and possibly emotionally), there is no way she can take care of him.
I am also looking for options. He will be released in two weeks. There is no way my mother can care for him at home alone. I live 16 hours away.
I was hoping you could update us on what happened with your father? I am looking for in-home care, and also considering moving him and my mother to my home for a few months until I can figure out what else to do. . .
I hope things have resolved nicely for you, thank you for any advice you can send my way.
Will try again because I can so relate to this terrifying crossroads and the distance matter. Believe a mistake was made with my brother (not going home) though I don't blame anyone. Was too far away.
Returning home with help is the best way to try and hope for his improvement which exists, no matter what. The brain works hard to heal itself but the patient's will, effort, determination count for so much too. This, it seems to me, is best preserved at home. Help can be arranged and is often also covered to some degree by insurance.
Perhaps this is of some help. We feel for you and wish you the very best.
Lindsey, every little bit of progress is worth a shout. My mom had a massive stroke at 63 and her dad several strokes when he was 65. She in 1980 and he in 1953. Since then there has been so much progress and medical attention given to stroke patients. I had a stroke in March of last year but only missed one day of work. It has been a challenge but I am improving every day as I try my best to keep mentally challenged as well as physically. I was able to keep my mom at my house for several weeks but she wanted so badly to go back home. I finally found someone to live with her who was a good friend. I did not have to put her in a nursing home nor did my grandad have to go to a nursing home for which I am most grateful. That is a difficult thing to do. The more you can work with him, yourself, the better he will be in the long run. I worked with my mom every day just helping her walk in the house. I had a belt around her waist and she would drag in right foot along but she was so happy just to be able to do that little bit. She was always ready to do it again. Just keep encouraging him and we will keep encouraging you.
i want to introduce myself to you. i suffered my stroke 5 months ago and i am stillo going. its a struggle and everyone in this stroke thread has basically the same problem. we all need encouragement and our family provides this to us.
i have always been upbeat and full of enthusisam , we have such wonderful people on this website. i felt after my days in vietnam this was the worse of my life, suffering numerous health problems. agent orange heart disease and open heart surgery, cancer diabetes neuropathy, a perm colostomy. so after all these bumps in the road i felt i was home free. what else could happen?
then approx 4 months ago i was found in the hospital with my stroke, on the left side. i have my pt/op and just a strong will to live. i found this websiteby luck and these people accepted me with open arms, what a great group of individuals.
i take my illness very seriously and know i will regain most of my arm,leg,foot andmy hand. we need to belive in our family friends . my wife bless her standds bye my side day in day out. i want to wish you and your mother a recovery and always belive.
i was raised with six younger sisters and i the oldest and only boy, so if i survived and still smile.
my sincere best wishes we are all in this together