not sure what to do


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my husband had his stroke a bit over 2 years ago. his is paralyzed on his right side and has trouble with speech. he does talk but it takes a while. the problem is - he thinks he is the same person but from what I see, he is not. he doesn't know his cut off points. He doesn't really let me out of his sight. it has gotten better - he use to have to be every where I was, now I can be in the computer room and him in the living room, he can see me from where he sits. I can't ever go to the grocery store alone - sometimes I just want some time to do my thing. before his stroke, I use to go to the store by myself, well with our 2 children but now, he has to come everywhere. He also doesn't like to go around my family - he thinks they treat me bad and doesn't want me to be bothered by them. I don't know, he has survived the horrible stoke and the badness from his family ( they don't want anything to do with him) and he only has me but sometimes it would be easier to go to the store, run in and get what we need and run out. when he comes it takes twice as long. I feel bad that I am writing this but I needed to get it off my chest I guess. my family doesn't understand

 

thanks for listening

BobbieJo

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hi bobbie jo, i'm sorry you are feeling this way. i do know you need time to yourself so you don't burn out. but as a survivor also, i think the extra time it takes to take him out is worth it, he needs time away from home too for an outing. you are his comfort zone, he probably feels more relaxed and comfortable with you and maybe doesn't like being alone. its a shame your families aren't more helpful for you to be able to get out more often by yourself. what about a daycare or stroke support group he could go to for an hour or so a week. do you belong to a church, where you could seek help from them. it is very important for the survivor to get out and try to be part of society again. being cooped up all the time is the worst for either of you. please don't make your husband feel like a burden, when he wants to go with you. you said you had children, are they not able to help you out. being a caregiver is not for sissies as jean has said many times here. neither of you asked for this event that changed your life. i do hope you find some relief soon so you feel better again.

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Hi Bobbie Jo,

 

So sorry to hear about what you are experiencing. As a survivor, I most definitely understand the importance of a caregiver getting "away" from their survivor. I'm a single Mom, my daughter is 15. There are family members who feel she should be home-schooled and NEVER leave my side. That would be disastrous for both of us. I do miss her (and the companionship) when she is at school or w/friends) but she must have a life too. It's possible, with all the family issues you both have experienced, that your hubby has some insecurity issues that you are going to "walk out" on him as well. I am 2 1/2 years post; if my daughter even teases about wanting to be away from me, I will become extremely upset and honestly cry and crawl into a shell. Yes, it can take additional time to lug a survivor with you; perhaps negotiating with him and scheduling an excursion would help qualm his fears. Prestroke, your marriage consisted of making concessions, I'm sure - the concessions now are just different but manageable. Perhaps when you take time for yourself (which you do need) you can have a friend come and keep him occupied. As Kim said, if you are involved with a church, fellow members may be more than willing to help out - thet just need to be asked. This is not your cross to bear alone.

 

(((hugs)))

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Hi Bobbie Jo,

 

As a survivor I could see that looking after me 24/7 for the first while was exhausting my wife. I setup shopping trips and movie dates with her sisters for her (she never knew till months later) :)

I knew she need a break, no matter how much I wanted her company, she had to have her space even if she thought different. Things have almost gotten back to normal ( whatever that is), Kath and I have different and sometimes the same interests, and we pursue them.

Could you get someone to come and play cards, or just hang around and watch TV with your husband, you need a break and the sooner the better. I hope things get better soon, take care.

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Hi BobbieJo,

 

I understand what you are saying. Apparently our husband's strokes were in the same area because Bill's strokes affected him in the same way. He has gone on to now suffer from vascular dementia and that isn't fun either. I really would encourage you to seek out the agency in your area that helps to keep the elderly in their homes longer. In our city the agency is called the Adult Center for Enrichment. This agency offers respite programs on a daily basis for 4 hours each day. Participants can attend from one to five days a week. They also pair clients with a care partner who will come to the home one day a week for 2 or 3 hours to give the caregiver a little break. These programs are available at little or no cost. My husband has recently gone into a nursing facility, but he had begun attending the respite program one day a week and when I called to tell the person who runs this program the situation she had just gotten a gentleman trained to pair with my husband. I will tell you it isn't an easy thing. I had hired someone to come into the home twice. He was very uncooperative and in fact stayed in bed the entire time I was gone the 2nd time - ignoring the gentleman who had come to help him. When I got home he immediately got up and announced he was ready to eat and shower.

 

You know, we always say that stroke changes our lives forever. It is difficult indeed when that change means the man we married loses the ability to continue on the way he did before the brain attack. I know we must gently teach our husbands, as we taught our children, the way they are to act and the boundries we have. Bill had gotten better about always going into the grocery store. It took much longer than twice as long to go into a store with him, and when I was in a hurry it became quite challenging. I handled that situation by planning times when that was our mission for the day - Bill wants to go out every day.

 

The bottom line is that Bill is jealous of anything that would take me away from him. This is a trait that was there before the stroke, but since the stroke has presented itself in part because there was a time I felt he would not get the care I wanted for him unless I was there. (I know the jealousy is fear that is translated into a need to have us within eyesight.) I really would suggest to you that in order for you to care for yourself you must acknowledge your limitations and find a way to work around them and through them. Ask for help where you can get it. Finances are always a challenge, so look to the non-profit agencies. It takes a lot of work, but it will be better for both your husband and you if you an find a way to cut the cord! I'm sure stimulation he would receive through other opportunities will help him and hopefully give you something to talk about when you get back together other than the Law & Order reruns!!

 

Please feel free to PM me if you need anything.

 

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Hello BobbieJo,

 

I sympathize with what you're going through. My husband and I are caretakers to our 23 year old daughter Rachel. In the beginning after Rachel had her stroke she wanted me right next to her all the time. When she was in rehab she was scared. Understandably!! When she came home 2 months later, she was still scared. She wanted me to sleep in her room or be with her in the same room all the time. She told me she was afraid of having another stroke. To be honest I was afraid of that also.

 

Do you think your husband could be having some of those fears?? He probably enjoys your company, but you do need some time to yourself, even if it's just a couple of hours. It's refreshing.

 

Take care and visit often. :friends:

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Bobbie Jo,

 

I read your post many times. My reaction was always the same! He sounds afraid to be alone. Do he have troubles with balance? Is he conceerned about using the bathroom while you are gone and falling? Is he also bored? I know that many of my stroke friends have fears of a stroke happening again. Is he afraid to be left alone because of this fear?

 

I think you and your husband need to sit down and talk about his concerns about always wanting to be with you or in sight of you. It will be hard to put yourself in his 'shoes', but try to understand these are true feelings for him.

 

If he feels up to talking because he is not tired and can listen to you, go ahead and tell him your feelings. Otherwise have him rest and then continue the conversation. Have some information about support groups he can attend or maybe activities put on by local communties. Ours offer a senior center that plans different activites. I would also explain that you would like a respit or a public assistant careprovider. You need this for him and yourself. How can he be involved in this process? Meeting the person first?

 

You both need to get your feelings out there! Ok, I will get off my soap box.

I hope you keep coming back. Don't feel bad about writing here. We are here to get things off your help, vent, ask questions, just socialize! We can be here for you!!!

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Hi,

 

You need to find some time for yourself, somehow, someway, and I am speaking as a survivor. There were some excellent posts about help from social service programs in this thread, but I have another suggestion.

 

What are your husband's limitations? Can he develop a hobby that he enjoys that can keep him busy for hours at a time? If he can, then this could be an outlet for him to get his mind off always being with you, and give you the break you need. Most men feel the need to contribute to something in life. Often times work is the priority; where men take their pride in. Now this stroke has affected his ability to work. I guarantee that he still has something to give back to life/others, and I would encourage him to find out what that is. I feel that he thinks at this moment sharing as much time with you is his priority, as it should be, but you both need an outlet for relief. He just may not realize that yet.

 

And yes, he may be scared about having another stroke. Most survivors have that in the back of their minds. The trick for me was to just get busy with other things in life, take the best care of myself as I can, and push the negative thoughts out of my mind as much as I can. By the way, I agree with the church thing. I wouldn't have made it as far as I have without my church family. They have been most supportive.

 

I wish you the very best. Please let us know how everything is going.

 

Bob

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Our children are 6 and 4 - they do help out little bits but they are little. We don't belong to any church - before his stroke we lived in Holland and he took care of everything. Now we are here and for the first time I have to take care of everything. I do involve him with the choices I make and include him in everything I can. We don't have any friends to speak of, just my family. He doesn't want to spend time with my family and I don't blame him. they treat him like there is something wrong or they ignore him. He's 39 and tells me he won't go to any stroke meetings - the one place that has a meeting here have older people and he feels he can't relate to them. He doesn't want any one to watch him. I have introduced painting into his life and coloring posters - he likes that. we also have all sorts of puzzles he does. I try my best to keep him not bored - I take him to the crafts store to see what else he would want to try. He now goes onto the computer by himself, he loves to look at ebay.

 

it's not like I don't want to spend time with him - I love him so very much. I had to fight with his parents to keep us together - they wanted me and the children to move back to the states without him and they would put him in a home. I could not leave him and luckily he wanted to move with us. I got him therapy when we first came and he hit a wall and only could go so far, we have continued to try to do therapy at home, but he likes to be difficult but I get him to do it. that's where the kids help - one is in school and we do school work with her at home. He has been doing much better at filling in words and the ABC's and stuff, his numbers are great - the stroke didn't affect that area. He helps clean the house - his balance is wonderful, he has only fallen twice and nothing recent. I put myself in his shoes all the time, that is why I always take him where ever I go. I do my best not to make him feel guilty about anything and do my best to always make him smile and laugh. I just want everyone to know that I love him so very much and I might have had a moment of complaining I have no time for just me but I do love spending time with him. He may be a bit different after his stroke but I love him even more - he came back to be with me and the children. He was able to come back to me and the children and I will be forever grateful that he had that chance - the doctors told me that he would die and not come back, so I feel very lucky to have him still in our lives. we have only been together a short amount of time - all together just 7 years now.

 

I just had a bad moment but I do like to spend time with my husband and the one time I did go out by myself I called him on the phone a few times, so it's not like I want to leave and I don't worry. I worry about him all the time. I do everything for him and our children. sometimes I guess a selfish moment pops into my head and I want me time, it's not that often anymore. I love caring for him and our children

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Bobbie Jo,

 

No one doubts your love and caring for your husband. The plain truth is that you need to be able to spend time away from him, doing for you, or you will burn out and be of no good to anyone - yourself, your hubby, or the children. As he is younger and getting involved on the computer, have him check out Strokenet - he may possibly want to join. We have many younger survivors - and those who are not younger are still young at heart. There are also "live" chats during the week that are available to members if he joined. No one here will pass judgement upon him or you. We've been there and done that and are willing to share our experiences in order to make life easier for others.

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I Ditto everything everybody has said. You do need time for yourself too so you don't get to burned out. He is very young still so it is understandable of why he doesn't want to go to meetings where everyone is so much older. And like how we women like to look our best for our Man, they want to look their best for us too. He is probably scared he is no longer attractive to you anymore due to his stroke and the physical deficits it has left him with. And like Bob said, Men have their pride at being able to protect and provide for their family. Many members here (more gals than guys) have stated that they are are afraid their partner will no longer find them attractive. I think your hubby may also be feeling this which is why he wants to be with you all the time. He may be so scared you might leave him for a stronger man. His pride and ego is probably at an all-time low.

 

Having a stroke is very emotional, we have all been there. So many crazy things go through our heads. Fear is real. Maybe you can get him some light hand weights for him to start pumping. I started lifting weights and it made me feel better about myself. I have a long way to go but I'm doing something. Of course the weights are only 5# to start but I'll work up. I also got strap on ankle weights to that I strap to weak arm and hand that work great since my hand is very weak.

 

All you can do is assure him you love him and will always be there for him.When the kids are in bed, have a romantic late night dinner or snack with him, cuddle, give him plenty of hugs, get him a loving card and gift. Bring him flowers even, maybe carnations for a man. I would give flowers to my male friends and they loved it and these guys were real manly men too. He would be touched every time he looks at them. You know what he likes, surprise him, make it special. I don't know if I am right but he just may be feeling really low and unattractive. But you sound like a great loving, caring wife who is doing all you can from the heart for your Man.

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I understand completely what you are saying, my husband had a stroke about 10 months ago, and I find that the last few months he is the same way, I can not be out of his site. I think we are their safety/comfort. It is very frustrating at times, I do need time to say take a bubble bath and close my eyes to regroup, but even that lately is nonexistant. This too hopefully shall pass.

Hang in there.

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hi bobbiejo,

i am not sure what i can add cause i agree with what everyone has said to you. it sounds to me as if the two of you have a strong relationship. you both are only human and dealing with a major change in your relationship brought on by the stroke. add two small children to the picture and i think only a saint would not want/need time to herself.

your husband's stroke was not that long ago - after my stroke i was very scared that something else horrible was going to happen - to me, to my husband, to the world, my kids .....being alone at times made me see how much i had lost and really would create anxiety and more fear. i am taking an anti-depressant now and have some meds if i get myself all wound up - i try practicing my relaxation breathing first.

you said you and your husband talk - try talking with him about your need for a bit of down time askspecifically him what would help him feel more comfortable so you could have a moment to yourself. having needs does not make you a bad person, mother, wife or caregiver. helping your husband to become more comfortable with being by himself at times is a gift as he becomes stronger. i wish you and your family the best - kathy

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