I just have a really wierd feeling......

[kkholt]

Hi All!

 

I have a really wierd feeling and need some help dealing with it..... My husband is 2 1/2 months post stroke, walking with a cane, has some hand/arm movement.

 

However I live in fear that every day is all the better he will get. It must be part of the grieving process. I just can't shake it. It is almost an obsession.

 

Any thoughts on how to get through this?

 

Karen

[swilkinson]

Karen

 

I found this board when I had the same feeling after my husband Ray had his fifth stroke You get through one day at a time. You accompany your survivor/partner on their journey and if you and you take some time out for yourself when and if you can.

 

We are all caregivers and survivors, taking a serious experience as lightly as we can. I just found a site full of fish cartoons and had the biggest laugh. It is best if you can keep your sense of humour going.

 

Keep posting here, start a blog to blow of steam or just record daily events in a book. You need to see that inch by inch improvement until it is obvious to you and to anyone else that there is real improvement.

 

We will support you in any way we can. Keep hope alive.

 

Sue.

[tom71]

Karen,

Have you ever thought of going to a therapist for help?, a stroke affects not only the survivor but the survivors loved ones as well so it is possible you may have a little depression setting in. there are many meds that can help this if your Doctor see's fit.

God Bless,

Tom

[pprovost]

Dear Karen,

Why not talk to the doctor. He will not give you false hope ( quite the contrary in many cases) Never assume anything. Up to a year much can happen. Science gains new knowledge every day. Research his condition. Take time for reflection and get to know your husband as he is now. My husband and I are much closer since my stroke. You may find the rewards of loving unconditionally. Therapy or a good friendly ear of a friend may help you as well. Allow yourself to grieve as you allow him to grieve.

 

Two and a half months post stroke I was still in the hospital and when I got home I regained alot with outpatient therapies.

 

 

 

best,

Pat

[fking]

Karen,

 

Read thru the other stroke support forums and this one too. Ther are lots of survivor reports in terms of years still getting better little by little. So 2 to 3 months, he has more improving to go.

 

Living in fear is not the way to be, there are just too many others here, my self included, that are improving everyday, and I'm going on 2 years, I will not give up on myself, when I read about other survivors with many more years post stroke still improving.

 

I'm back in therapy for the third time, to me, improving doesn't stop when the will to get better is in your heart. More exercise, more walking, more using the affected side equals improvement.

 

Then, you have to accept the fact that he is not the same person as before the stroke. I'm even back driving and doing most other things, just not as fast as before my stroke.

[sktlwsk]

All improvement is a great thing to be happy with. Early on in therapy the results are more noticeable on a day to day basis. As time goes on, the progress may get a little slower, but you MUST keep working at it. My wife just went past 2 years and we keep on getting better. I say "we" because we learn what works best and try to improve on that. With my job, I'm sometimes away for 2 weeks at a time, and progress that I couldn't see from one day to the next, is very noticable when I come home from a trip. She has an exercise program that we set for her, and she's real good about keeping it up. I think she may be able to walk again in a couple years. She's a real hard worker. Point is, work with a therapist and set up a regimen that allows for more progress. Don't give up, work towards a goal, and stay the course. Professional therapy can be (and is) an on and off thing, depending on the rate of improvement. Plateaus happen. Keep up with this board, because you can learn new stuff and get ideas all the time.

[bstockman]

When I first found this site I was so happy to find people who understood what I ws going through. They gave me much encourgement and hope. I was given very good advice from another survivor " Don't compare what you can do today to what you could do before stroke happened. Compare what you can do today to what you could do right after the stroke. It made me realize how hard I had worked and just how far I have come.. and don't give up. I still have improvement...other survivors also, many years after stroke. Recovery is an ongoing process. It will continue as long as you try.

Bonnie

[Keepongoing]

I brand new to this board and I can't believe all the questions I have had that other have as well. My husband just went through a recent set back and now I am beginning to feel he may not get back to where he was before the set back. I have also spent many of times thinking this is it, this is as good as it will get because he just isn't moving forward, and then it starts again. I am normally very upbeat and keep my husband moving forward. I know this is one of the things that help him to get as far as he has. This last set back has me very down and having a hard time getting the win-win attitude back, it's like I am grieving again. What a roller coaster and now I am feeling guilty that I have lost my positive attitude.

[swilkinson]

All the caregivers are with you on the rollercoaster ride. You do get used to the stop-start progress. No-one climbs a mountain all at once and so the survivors, each with their own mountain climb ahead of them, surge and sleep, progress and pause for a while.

I wish I could tell you it all comes out well in the end. But for Ray and me,our lives are still on that same plain, move forward, move back a little.In between, when the plateau arrives, make as many daytrips, nights out wuith family and friends, movie nights, whatever makes you feel "normal" and take full advantage of the good times. Then when the setback comes it is minor and you have good memories to smile over and enjoy.

Keep on striving for that win-win, but time out to relax is important too. For both of you.

Sue.

[Guest lwisman]

All stroke survivors experience setbacks and plateaus. So far I have never heard of anyone who did not experience going forward again. Just keep working at it.

[LChatman]

Hi Karen:

I hope you had a Happy Thanksgiving. Since my husband Julian's stroke(12-06-04) life has indeed been a rollercoaster ride. Some progess, some setbacks...it's an uphill climb. However, this Thanksgiving holiday finds me very thankful to still have Julian with me. With every hug, every joke, every baby picture of our children that we can reminisce about, I'm grateful my husband is alive and at home with us. I have learned to be more patient with him and rejoice at his progress, which is good for both of us. I still get tired with working all day, and caring for Julian and our son but I've learned also to take time out for me and to get my rest. God bless you and stay encouraged. I'll be praying for you.

 

LaTanya

[Kj mcmeekin]

Hi Karen:

 

My husband was 50 when he had his first massive stroke. He was in the hospital for 2 1/2 months and I was told to put him in a nursing home because he would never function again. So I listened to them and did just that. He was in the nursing home for about 7 months and just deteriating. So I got him out May '05. When he came home he could do nothing for himself. I was even feeding him at that point. Now 6 months latter - he feeds himself, he can pick up a glass or coffee mug - he shaves with a razor - I have completely re-potty trained him that he is back in his underware and the list goes on and on.

 

I guess what I'm trying to tell you is Don't Ever Give Up!!!!!!!!! Chris has had periods of no gain and even seemed to go backwards - but I never stopped doing what the PT and OT told me to do. Everyone progresses at their own pace.

 

It can be very difficult and challenging to be a caregiver but with each small thing that Chris accomplishes always puts a smile on our faces. For me its hard to believe that when my husband went into the hospital he was 50 and when he came out he had the capabilites of a child. But as a child can learn so will my husband and so will yours.

 

Take Care of yourself and stay in touch.........We are all here for you!

 

Kim

[yellowcar]

Karen-

Hang in there sweetheart! You are not alone!

 

I think for every "high" you get when you see some progress or improvement, you fall a bit further when there is a set-back or you hit a plateau. I just try to remember that it's not always realistic to see continuous progress w/o some kind of break or plateau. I try to see plateaus as a "good thing", like they stay at this one point to really get good at it, to master that level, before they can move on. Maybe I'm just doing this to keep my own spirits up...but it works for me.

 

Also please acknowledge what others have said - that caregivers also must grieve for what they've lost. In my situation I had to grieve the loss of the part of my father that was my number one supporter, who loved me unconditionally, who protected me and who nurtured me. But at Thanksgiving I felt that I was truly blessed to have him alive at all!!! While I wish he had never had the stroke - I'm happy he's alive! And now it's my turn to be all these things for him. I've learned that children can love their parents unconditionally!

 

I'm grateful for my therapist - who helped my understand that my loss is no less significant than his physical loss, who helped me understand that I need to grieve in order to be able to be a good caregiver, and who has taught me that I can be sad and still feel blessed that he's alive all at the same time.... and that some times, it's okay to feel sorry for myself because my life has changed...but also that I need to be very proud of all of my accomplishments as a caregiver.

 

Karen, you're doing a great job. It's a mighty tough job - that you probably never thought of applying for - but you're up to the challenge. Remember to love yourself and to be your own caregiver sometimes. You need to recharge your batteries to have strength to carry on!

 

Yellowcar.