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Old 06-24-2011, 02:08 PM   #1
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Unhappy New to Board - Stroke Caregiver

I'm new to the board and I'd like some advice. My husband had a stroke in March at 58 years old. He was in rehab until the end of May and is at home now. He is still in a wheelchair but gets around the house and does transfers by himself. He is working on relearning to walk with the therapists. Overall, he's doing well. I had to start a new job so I'm not home with him during the day.

I'm concerned though because all he seems to do except for the few hours a week he has therapy is watch TV. I have tried to get him to play a game or read or do puzzles but he just doesn't. He also doesn't practice walking with his cane much and I think he's slurring his words more since he came home. I feel like I'm constantly nagging him. When I try to talk to him about it his uncontrollable emotions kick in and he starts giggling like a kid. Its so upsetting to us both and I don't want to add to his stress.

His mood is generally good but its almost like he's in a dreamworld and that he thinks nothing is really wrong with him.

So what should I be doing as the caregiver? Is it better to leave him to himself to do things at his own pace or keep pushing him to do more? I'm terribly worried he will stop improving but I don't know what to do. Any advice?

 
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Old 06-24-2011, 03:45 PM   #2
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Re: New to Board - Stroke Caregiver

Hi,

I'll give it a try. My name is Rosalind. I'm 48 and suffered a stroke on 4/10/11. First, I would say is talk to the doctor about it or a therapist. But to give you some perspective from the patient. I was and am tired and depressed - all the time. It takes energy for everything and sometimes I'm scared from every ping I feel so for me not moving seems safe. But its so easy to fall into depression 24/7 and that is bad. My emotions are all over the place so laughing, crying, giggling are all par for the course. I just stop myself at anger because think if I do get angry, I'll have another stroke. Having space for you is important, but realize... if its hard for him holding or picking up things, game pieces while therapeutic probably are not the best choice.

Be patient, pray, get medical advice ... and remember that he's probably tired all the time... and being still and resting probably is alll he wants.... maybe not what he needs... but what he wants...

good luck...
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Last edited by Alone in Vegas; 06-24-2011 at 03:45 PM.

 
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Old 06-24-2011, 04:35 PM   #3
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Re: New to Board - Stroke Caregiver

Hello
I am so sorry for what you and your husband are going through. You have come to the right place because everyone here can relate to what you both are going through.
Im one year this month in stroke recovery. When you described your husband I could relate to everything you were saying. In the beginning I was so tired so off balance and so confused. I couldnt watch television because it was too much activity in front of me but I cried for weeks. Emotional and not in control of them. My daughter wanted me to play checkers . I couldnt play because I had NO idea how to play checkers. I had no idea why anyone would want to play checkers. But I can play checkers now and Im darn good at it.
I was dealing with a fuzzy head, headaches, noise bothered me. people bothered me. In the beginning there is a lot to cope with. Just processing what has happened to him is draining. Everything he does sucks up his energy and he only has so much energy to spend.
You are right to want more for him but how much he should he be doing only your doctor can advise you on that. I know they stress over and over how the first months are so important for improvement but I am still seeing improvement after a year. Is there a friend or other family member who could encourage him? Keep posting and let us know how you both are doing. Im sure other people here will have some good advice for you. God Bless
Mulchie

Last edited by Mulchie; 06-24-2011 at 04:38 PM. Reason: added to post

 
Old 06-24-2011, 07:47 PM   #4
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Re: New to Board - Stroke Caregiver

I am only very newly into the caregiving role, but just wanted to offer my hugs and support to you. My MIL suffered a major stroke about 2 1/2 wks ago and seeing her now as compared to how she was before is a huge shock. She was a very independent person but now is totally different. We are just starting with rehab at a care facility before trying to get her transferred to an intensive rehab place at a hospital but it is a slow process. Are you the only one taking care of your husband or do you have any other outside people coming in at all to help? I can imagine how hard it is for you. From what I have read, recovery is slow but it is a continuing and ongoing thing so try not to get too frustrated. It's like your loved ones' personality is stuck inside them and it is hard to accept the new way that they are now. And it's a shock to know that they probably will not be exactly the way that they were before, but with intensive therapy, they can get close. Does he go to outpatient therapy during the week? Maybe he needs a more intense program that really pushes him. At any rate, please let us know how it is going.

 
Old 06-24-2011, 11:57 PM   #5
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Re: New to Board - Stroke Caregiver

Hello me...

My name is Janet, and I welcome you to our family of stroke survivors and the ones who love them, such as yourself. You have just arrived at a place of comfort and understanding, as we are all in every phase of stroke recovery. While strokes have many sources, and endless outcomes, there are also some very typical phases of stroke recovery.

Your husband is in the earliest phases of his recovery. What he needs most is patience, understanding and empathy. He is confused, scared, frustrated, and is likely going in and out of clarity. His brain likely feels like it is in a washing machine. He most needs to be assured that he is not alone, and that he will be ok. Promise him he will get better with time, and live for that. Maintain the most positive attitude around him that allows him as many "wins" as possible. Allow him time inside his head, without forcing him out, with conversation or questions.

He is in a very delicate operation, healing his own brain, while still operating all of his functions, or trying to. Some things need to be given up, so the brain can make connections, re routing blood supply, and one day get him to be able to function as if he did not suffer a major brain insult. Try not get frustrated with him, love him, and he will heal the best. Just assure him, it is so scary when you are aware that your thoughts do not connect anymore.

My caretaker had to wait over a year just for me to wake up, except to be fed or to restroom. This entire 8 years, he just encouraged me to be happy, I am safe, I will get better! And I have, only to have re emerged as a renewed person, an appreciative person, a wiser person and a person helping myself by helping others. I have gathered all my strength and positive attitude by sharing with others here. Welcome, and we are happy you are here.

Janet

Last edited by writeleft; 06-25-2011 at 07:19 PM.

 
Old 06-25-2011, 08:18 AM   #6
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Re: New to Board - Stroke Caregiver

Quote:
Originally Posted by mebbuddy View Post
I'm new to the board and I'd like some advice. My husband had a stroke in March at 58 years old. He was in rehab until the end of May and is at home now. He is still in a wheelchair but gets around the house and does transfers by himself. He is working on relearning to walk with the therapists. Overall, he's doing well. I had to start a new job so I'm not home with him during the day.

I'm concerned though because all he seems to do except for the few hours a week he has therapy is watch TV. I have tried to get him to play a game or read or do puzzles but he just doesn't. He also doesn't practice walking with his cane much and I think he's slurring his words more since he came home. I feel like I'm constantly nagging him. When I try to talk to him about it his uncontrollable emotions kick in and he starts giggling like a kid. Its so upsetting to us both and I don't want to add to his stress.

His mood is generally good but its almost like he's in a dreamworld and that he thinks nothing is really wrong with him.

So what should I be doing as the caregiver? Is it better to leave him to himself to do things at his own pace or keep pushing him to do more? I'm terribly worried he will stop improving but I don't know what to do. Any advice?
Hi Buddy,
Welcome to the board. I am sorry that your husband had a stroke, but you have found a good place for support and information from us stroke survivors that have been there. I want to give you my aspect on his TV watching. I had a major stroke in Jan. 2010.

First of all his stroke was only a few months ago. He is just starting on his recovery. Stroke recovery is slow and long process and from my view it never really stops. You have to remember that his brain was damaged, so he is going to be a little different than what he was pre-stroke. When I got home from the hospital all I did was watch TV also. But don't look at it as him regressing. None of us know how much cognitive damage has been done by his stroke. After my stroke there really wasn't much that I could do, so I watched TV. When I watched TV, by default, I had to re-learn how to use the remote, even how to turn it on and off. I had to make series of numbers so it could go where I wanted. I had to re-learn forward, reverse, pause, etc. and it took a long time. All of these things were recovery tools that helped my brain trying to get back to normal. I also watched a lot of movies and used the pause and reverse all the time so I could understand a conversation or understand the story line if I didn't get it. All of these things where a start of my recovery believe it or not. It helped my to think linear again instead of my brain just a jumbled mush. It also helped my to read again if I watched the news, I would pause all of the graphics and try to read what they were saying. I was not laying on the couch "vegging" out. I suspect your husband may be doing the same when you are gone. He may feel embarrassed for you to see that he doesn't understand simple things anymore. And when you tell him to read or do a puzzle and he doesn't, maybe he can't. And again he feels either embarrassed or guilty and doesn't not want to tell you that. Our man ego, has been crushed because all the things we used to do are all gone, and it is a hard thing to deal with along with everything else that is going on.

Also weird emotions are also a part of a stroke. When he giggled at you, don't take it personal. He doesn't not mean it I promise you. After my stroke, we had to put our cat down that we both just loved. On the way to the vet I started laughing and couldn't stop. Me wife was so angry at me and I don't blame her, but I told her I can't help it. It is something from my stroke. She still was mad. Only a stroke survivor could understand that situation. I know she tried to understand, but I know that day she was very hurt and I hated that, but I just could not help it. It was almost like a sneeze or something, like a reaction your body does that you have no control over. She made me stay in the car so I wouldn't laugh at the vets while she was crying. I also had about 3-4 months where I cried everyday. But all of these things and weird emotions always subside in time. Please give him patient and love and understanding. He is a different person now. He may not even understand it yet his ownself yet.

God Bless,
Tim

Last edited by Positive Cynic; 06-25-2011 at 10:33 AM.

 
Old 06-27-2011, 07:07 AM   #7
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Re: New to Board - Stroke Caregiver

Thanks so much for explaining a little what it was like when you first came home after your stroke. I can't explain to you how incredibly helpful it is to hear other stories similar to my husbands. I'm trying so hard to help him that I think maybe I am trying too hard at times, so reading this I will back off a little and let him find his own way a bit more. He has always tended to be a self-admitted lazy guy and that is why I'm so worried but you are right. He's only been home a month and it takes time.

 
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Old 06-27-2011, 07:10 AM   #8
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Re: New to Board - Stroke Caregiver

Thanks so much! You had your stroke so recently too that your feedback really helps. Its hard to know when to try to motivate him and when to backoff so I will try to default to "back off" more often. Love your cat by the way but what is that on his head? Hysterical! I can't even get my cat to stand still that long.

 
Old 06-27-2011, 07:13 AM   #9
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Re: New to Board - Stroke Caregiver

Its really so helpful to hear so much feedback. I'm so glad I found this board. Unfortunately there is only me to help my husband. While his family surged around us when he first had the stroke, they have all since gone back to their own lives and he rarely hears from them. Sad but not unusual I'm told. My family has actually been better about supporting us surprisingly but that is more support for me then for my husband. Anyway, its good to hear from others in the same situation. Thanks so much!

 
Old 06-27-2011, 08:30 AM   #10
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Re: New to Board - Stroke Caregiver

I'm still going through.. there are days Im up at 4am cleaning... and days that I say in bed all weekend... its a thin line between covering and just laying around feeling sorry for myself... and understand... I'm scared every second that something I eat or drink or do will land me with another stroke.. not to mention I have to think about everything to do it. Its all exhaustive... very!!!!!!!!!!!!!!!
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Old 03-08-2012, 12:52 PM   #11
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Re: New to Board - Stroke Caregiver

I feel like my experience was so similar to the people who posted on the thread. I was a jumble of emotions and really couldn't control how I felt. I know this is a difficult period but hang in there and things will get better. I am still recovering but I feel much better and I know my wife is much happier with how I am now. It was hard for her to understand why I acted like I did when I first came home but like I said now things are much better. I wish you the best and will keep you and your family in my prayers.

 
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Old 03-09-2012, 04:37 AM   #12
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Re: New to Board - Stroke Caregiver

Steven,
Welcome and I am glad you found us here. I have found that a stroke re-arranges the whole family structure and is hard on every person. I am so happy your wife is hanging in there with you and trying to understand. I know it is not easy on her either. I am know disabled and my wife has do be the bread winner for the family and we lost a lot of physical possessions. We even had to pawn our marriage rings just to pay bills. And they were beautiful. The ring I bought my wife was 2 carat diamond, quite expensive. Everything has been a struggle. Nothing has been easy. We don't have much anymore, but we have each other and that is all that really matters. When it all boils down, Love is the only thing that matters and can get us through the worst of times.

You hang in there buddy. It is a long process, but it does get better everyday.
God Bless,
Tim

 
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