He's content - I'm frustrated

[RLT]

Most of the time I just read what others have to say around here. I just finished reading Cinder's 12 pages about her Dad and feel guilty about being dissatisfied when I have it so well in comparison. Still I do feel frustrated.

 

My husband's stroke was nine months ago. He actually had a combination of strokes which left him in such poor condition no one expected him to live. Signing a DNR was the most devastating things I have ever had to do in my life. They wanted to put him on a ventilator but I would not let them. I knew that he did not want that. I am SOOO thankful I made that decision. So many of the procedures that they did to "help" him while he was in ICU that month actually created the problems which we are still dealing with. When he was transferred from the hospital to a rehab hospital he had a PEG because he had failed his swallow test, had two yeast infections, a UTI, and had glucose intolerance and was on insulin, he could not speak at all, was paralyzed on his right side and had less ability to sit up etc. as an newborn infant.

 

Today my husband is able to walk around the house with a quad cane as long as I am with him because he looses balance and falls to his right several times a day. All his infections are cleared up and he has been quite healthy plus he no longer needs insulin. He talks a lot now but I understand only 5% of what he says. I have even discovered that he can move his right hand and fingers as well as the elbow and shoulder though there is not much left in the way of muscle.

 

My husband has not had therapy since June when medicare stopped coverage. I had hoped to get him back in therapy this fall but several things stopped that. The BIGGEST reason is that he will not do it. I can take him to therapy but he will put on an act of being unable to do anything. This has been true at every therapy place we have gone. So they end up working and working to get him to do stuff he all ready is able to do. They of course will not really listen to me when I explain it to them so I have to prove it by working with Dick myself. I end up telling the therapists exactly what to do and have to stand over both theapist and Dick to see that it is done. Waste of time! Getting him to exercise at home was even more difficult.

 

We were in Texas when Dick had the stroke, living a dream life of full-time RVers. We had a wonderful 40 ft. diesel motorhome with three roomy slide-outs. It seemed huge - until we introduced wheelchair, commodes, shower chair ... you get the idea. So I made the decision to return "home" sell our coach and buy a house. I have not lived "home" for over 20 years so I have no contacts here anymore except my parents. So this move I have pretty much done by myself. I have had to buy a house and furnish it and decorate it etc. without my interior decorator husband's help. He only seems interested once in a while when he wants to do something that is impossible which makes my job even harder.

 

So during the summer I made the choice not to worry so much about therapy and exercise. I feel over extended in every way so I needed to take some of the guilt pressure off for a while. I still did not finish "getting settled" during the summer but now it is fall and I feel the pressure to get Dick moving again. Problem is he is quite content to sit in his recliner and sleep and watch TV most of the time. Occasionally he gets cabin fever and wants to go shopping - GROCERY shopping of all things! But when it comes to exercises - forget it. His right shoulder is freezing up so that it is very painful. I am certain that we could get it loosened up so it would no longer hurt AND he would probably be able to begin using that arm and hand again. But he will not cooperate.

 

So I find myself on two battle fields all the time. 1st fighting him to do what I truly believe would help him and 2nd fighting myself who feels overwhelmed with all the responsibility and all too willing to give up when he will not do "his part." Then there is the balance of quality of life vs. quantity of life. My husband is 74 years old. He has had a wonderfully full life and had a chance to do every dream he ever had. Not too many people can say that. After the experience we had in the hospitals after his stroke he and I agree that we will NEVER put him through that again. He wants to enjoy himself and when his time comes, he wants to die at home. But that also comes in to play on a daily basis. Do we force him to be in pain and doing what he does not want to so maybe he can or maybe he can't get better mobility or use of his arm? He is happy and content the way he is. Will forcing him to work actually improve the quality of his life?

 

So then we turn around and look at all this impact on me. In his current condition he is quite a load of responsibility. I cannot leave him for more than a few minutes. I went out to mow the front yard the other day and soon I saw him standing at the front door wanting to come out. I was so glad I caught him before he opened the door because he can barely do those steps when I am helping him. As I said before I must walk with him all the time or he will fall. He HAS fallen several times when he has gotten it into his head to do it on his own. The last time he smashed and antique table which I had just refinished and still has huge bruises and a back ache. He is especially liable to fall in the bathroom (he did fall into the tub one day) so I must take him. So even IF I have say my mother sit with him for a while I must be back before he needs another potty trip. Before the stroke we almost always did things together so me leaving him really seems to upset him the few times I have run to the store while my Mom sat with him. So I have tried to take him with me everywhere. Pushing his wheelchair and pulling a shopping cart while having him ask for things I cannot understand and trying to remember everything on my shopping list is not my idea of fun. Of course I never felt grocery shopping was ever fun and that is his favorite!! I come home exhausted put him in the house then have to unload our purchases. That is about the time that he wants to go to the bathroom then have something to eat or maybe just stand at the window and look out. I'm standing there wanting to crumble on the floor and cry.

 

Several years ago my wonderful husband saved my life. I was in an abusive marriage and had finally had a complete emotional break down. He had been a wonderful friend for years but he literally kept me alive. When it became necessary for me to divorce my ex, Dick took me in and was the best therapist a woman could want. I love this man so much and I owe him my life. After travelling with him for a couple years we decided to marry just so we could be able to care for each other in the advent of a problem. Little did we know that this move would be so important. As a couple our love and friendship was greater than that of most couples even though it had unusual roots. I know that Dick still loves me but he seems only able to think of himself anymore. This is painful in so many ways. I miss my husband. (Something that I have read so many times on this site) And I feel so isolated and lost. He is no longer able to take care of me and I do need taking care of.

 

To complicate all this is the inability to communicate. I cannot understand most of what he says. Getting the simplest thing figured out can be an ordeal. He never gave simple answers and he seems to find it difficult to just answer yes or no! He had speech therapists in the hospital. One could not get him to say anything and at that point he could not even do the exercises she wanted him to do. Another needed a speech therapist herself. She was only able to teach him how to do pre-school worksheets and never any speaking. The third was a crazy woman who came to our coach in Texas. We loved her! She was able to keep him laughing and get words out when he didn't know it was happening. Everything she did, I learned how to do so we out grew her. It has been impossible to find any speech therapists around here. When you find them they have a waiting list most of which are children. I have a problem with a speech therapist who will talk to a 74 year old man about "Mr. Pointer (finger)." With the cost factor I am reluctant even to try to get on another list. We have been on so many only to find out there is some reason that therapist cannot help us. I have been interested in some of the software programs I have heard of but I have no guidance on what to choose that would not break the bank. Without the ability to clearly speak I feel that we will drift apart more and more. I just don't know where to turn.

 

I have rambled on and on and vented more than I have been able to tell anyone. If you have made it this far, thank you for listening.

Ruth

[door60]

Ruth,

I read your story, and I really get it. My mom is also 74 years old, and motivation is the key issue. I feel she could have done so much more than she has up until now, but she lacks the motivation. My mother is currently in the hospital for pneumonia. We were told one reason her simple cold turned into pneumonia is from lack of movement. Can you think of anything that would motivate your husband? With my mother, it's seeing my sister (who has been MIA since her stroke). I finally got my sister and mother talking this past March. My sister only saw her once since March, but is expected to see her next week. This will have a major good impact for my Mom -- if it goes thru.

Anyway, I am praying for you, and thinking about you.

Dorrie

[jriva]

 

Hi Ruth,

 

I just wanted you to know that you're not alone and isolated when you come here. Coming to the site and sharing experiences has really helped me with the isolation that was caused by my husband's loss of speech. I feel it's important that you find a replacement for that part of your relationship with your husband---whether it be a friend or relative you can talk with on a regular basis, a local support group to network in, or you come here and start a blog where you can get your feelings out on a regular basis. That lack of communication is a BITCH to live with when you're used to sharing your every thought!!

 

Do we force him to be in pain and doing what he does not want to so maybe he can or maybe he can't get better mobility or use of his arm? He is happy and content the way he is. Will forcing him to work actually improve the quality of his life?

So I find myself on two battle fields all the time. 1st fighting him to do what I truly believe would help him and 2nd fighting myself who feels overwhelmed with all the responsibility and all too willing to give up when he will not do "his part."

So during the summer I made the choice not to worry so much about therapy and exercise. I feel over extended in every way so I needed to take some of the guilt pressure off for a while.

 

I truly believe that a stroke takes many survivor's ability to be self-starters away. My husband, for example, was not lazy by any means. He always had more jobs and balls in the air than anyone I've ever known. So now that he's had a stroke and no longer does any of his exercises or therapies without me reminding, I know without a doubt that he can't help it. I accept this personality change and try not to let it get to me.

 

Like you, though, occasionally I'll get over-whelmed with my work load and feel a little resentment creeping in. That's when I have to remind myself that it's not about him---HIS lack of motivation or HIS not helping himself get better. It's about me needing to step back and getting some much needed me time. So the housework or whatever gets put on the back burner and I feed MY soul. It sounds like you have had this battle with yourself and you're on the right track. However, you've just got to learn not to feel so guilty over it. That is a caregiver's curse....we take time for ourselves and think: "I should have been using this time to push my husband to do more therapies."

 

Another thing that helped me was an OT who told me words to the effect that no one has enough time in a day to rehab their survivor---its a full time job in itself. So, she said, pick your battles and work in the area that seems to mean the most to your husband. For me, that was speech so that is where we focus most our therapy time. Another suvivor might make a different choice. For me, I feel my husband and I have a right to a peacefully co-exist and we can't do that if I'm nagging every waking hour about him doing things he doesn't or can't do on his own. But please remember, he's over five years out from the stroke now. And I also believe in coaching and cheerleading as much as you can in the first year to year and a half. Some where around that point in time is where, I personally, believe you have to accept the reality of your lives and let go of some of the pushing so hard to get better and just let it happen if it does or doesn't.

 

I don't know if this helps but I just wanted you to know that you're not alone in these internal struggles you're going through.

 

Jean

 

 

[bazane]

Ruth you are not alone in the overwhelming feeling of trying to help your husband with his therapy & feeling guilty because you are overwhelmed with everything else.

My partner Baz had a stroke a year ago & will not do any exercise at all unless I force him then he looks like a wounded puppy being mistreated, I also was in a bad relationship for many years & Baz "rescued" me as well & we have spent 8 wonderful years together, I know he still loves me dearly but it is hard when he only thinks about himself & I have to do everything. It is good to have these posts as you can feel really alone & only the people whose loved ones have had strokes can really understand how we feel & how isolating it is ,even though most of the people are across the other side of the world I can relate to them more than the people who surround me every day!! As Jean says, we love our loved ones & have to remember that they are still the same people but the stroke has taken away the people we are used to & we have to be there for the "New" people they have become.

Thanks, Anne.

[2ndChance]

As a survivor, I would caution you against trying to force him to do therapy he doesn't want. He won't really try, so there will be no benefit. You will drive yourself mad and he will resent you. At 74 hasn't he earned the right to make his own decisions?

 

If you can't care for him in your home - that is a whole other issue. You have a right to a safe, content life as well. If necessary, acquire in-home care or start researching adult day care or nursing homes.

 

Rene

[RLT]

Thank you for your words of understanding and encouragement. It is indeed a help to be heard and understood. It has been difficult to deal with all this pretty much alone. I no longer know anyone in this area which I have always called "home" because it has been so long since I lived here. Both my husband and I have been accustomed to having fellow RVers to socialize with. They were such a wonderful support when the stroke took place. I moved back "home" because my parents still live in the area and in my under rested brain at the time it seemed important to settle where we have our cemetery lots!!! I have thought of trying to find a local support group but the idea of adding something else to my schedule right now is less than motivating. Adult care, home care, nursing homes all seem out of my reach right now. Between buying and furnishing a house, paying medical bills and losing 70K on the sale of my motor home, there just isn't anything left. Sometimes if feels like we are in a hole and just cannot get out. I have bought so many gizmos that therapists have ordered that we have ended up not needing plus the lack of progress in therapy has left me uncertain what to do next. Any suggestions of what we can do at home would be appreciated.

Ruth

[bstockman]

I agree with Renee & Pam, My husband had to return to work, so I was on my own, I could walk with a walker, use the bathroom on my own..

The more I did the better I got. Also at 74 maybe he is just tired..

Maybe you could check out an adult day care and take him one day a week to give you some free time. Also if he was in any of the Armed services you could contact the American Legion & Veteran's hospital for assistance. Bonnie

[Guest joy]

Ruth, My husband is 75 and had his stroke nearly two years ago. He is not motivated to any improvement and has been through many therapist and all have given up because he will not help himself. They can only do so much. It was becoming a major battle just to get him to therapy so I quit fighting and let it go. He is much happier and I have adopted the attitude that it is his body and he is of sound mind and able to make decisions for himself. I let him make this decision to quit therapy.

 

I too, feel overwhelmed by the responsibility of making all the decisions by myself and sometimes have a good crying spell to get over it. I am in the process of selling our big very old house and having a new one built that it totally handicap accessible. I am doing this all by myself and have found the strength to do that. Our realtor, who is older herself, asked me some hard questions - like "What if Hans dies tomorrow - what will you want to do then?" I know that I would not want to stay in this big house. I would definitely need something smaller with much less maintenance. So right then I decided to go ahead with the sell, build and move plan. I just pray that it all works out and Hans gets to enjoy the new house with me.

 

It is really, really hard to walk the road that we have been rerouted to but it is doable. Allow yourself some down time and time to mourn and grieve the life that you have lost but learn to enjoy the one you have now.

 

God be with you,

 

Joy

[swilkinson]

I agree that you need time to yourself. I had a social worker come today and she urged me to take more outside aid so I can have some "me" time. Unfortunately this has to be paid for so I need to see if I can budget for three hours off a week. I have been caring for Ray since 1999 after two major strokes and he has had two strokes since then and a few TIAs, he is 63.

 

Ray and I shop together, basket by basket with the basket resting on his knees in the wheelchair and me taking each load back to the van. His reward for a morning's "work" is hot chocolate and cookies from the Cookieman so he LOVES shopping too. Because we are low income I work from a list but do splurge out on treats occassionally.

 

He goes to Daycare one day a week ( five hours) and friends take him to Bible study for two hours on Tuesdays but he is mine 24/7 apart from that.

 

If you have things you want to do schedule them into your week. Doctor's visits,shopping, visiting, eating out, exercising. Being organise only works with Ray if I make all the arrangements for him. It's takes a time and motion skill he no longer has since the strokes.

 

So our days go like this:"What day is it? What do we do today? Who will we see?"

We have days for doing everything plus some free time. In his free time he likes to read on our sunny front verandah, that is my housework time. I do ironing, gardening and some craft work while he sleeps each afternoon, I come onto the computer and talk to friend by phone after he goes to bed of a night.

 

What I can't do is spend long periods of time away from him and that is very limiting. It is frustrating to turn down invitations because of his swallowing difficulties, those which are in places without disabled access and all those which involve spending beyond our budget. But you do reach a place of acceptance eventually. After all some folk have to do this all their lives, we have only had this problem for six years.

 

We go to our local heated pool once a week for exercise and he has an exercise bike which he sometimes consents to use. The mornings are best when he is fresh and bright, he sleeps most of most afternoons. I don't push him although I would like to see him do more. He has falls which come partly from muscle weakness so more exercise would help.

 

I hope some of what I've said here can help you with your present situation.

 

Sue. :friends:

sa

[bazane]

Sue.... I can agree totally with what you posted as it is fustrating to have to limit your life to what you can do & what you can afford to do as we too are on a low income but Baz asked to go for a drive the other day & we had a milkshake & sat by the river he is quite content with that I am happy that he wanted to go although he hadn't had a shower or shave & I had a hundred things TO DO but it was worth the extra work to see the delight on his face as we went through the countryside.

I wish I was more motivated to go out more but it is so hard to do it more than once a week!!

Baz also sleeps for at least 3 hours each afternoon & that is when I get housework done or catch up with people I also do a computer course twice a week 2 hours each session which is my life saver (more social that learning).

We are also going back to hydrotherapy once a week which he refused to go to for the past year , so I am pleased about that.

The mornings are the best time to do anything as the afternoons are hopeless.

It is so good to read the posts here as otherwise it is a lonely existence sometimes as no-one really understands who are not in our situation, Take care Anne.

[RLT]

It really is an encouragement to know that I am not alone in my feelings. I know that I should be thankful for all that I have but sometimes it is just impossible to stay on the bright side. I guess I just need to feel sorry for myself sometimes.

 

My son came down on me this week because I never finish anything. It really discouraged me and I was half mad at him but I knew all the while that he was right. The problem always seems to be that project one cannot be completed until project two is completed which cannot be completed until project three is complete which cannot be completed until project one is completed.

 

But, I have made some progress this week and it has netted some unexpected pluses from my husband. I painted the bathroom walls and the cabinets. I also put a new vinyl floor in hoping that will hold up better since we seem to flood the bathroom when Dick gets his shower. The big thing though was putting in a new toilet. I got one of the "comfort height" toilets which is about 3 inches higher than the standard toilet. No more plastic commode over the toilet!!! YES!! I was nervous about tackling a job like this but boy am I proud of myself!! I asked Dick how many wives would install a toilet for their husband. Most of the time Dick really does not even realize all the work I am doing around here. But today he talked and talked and talked. I couldn't understand what he was saying for a long time but finally figured out that he was being rather poetic saying that there are millions of stars in the big sky and I was a special star! I have been painting and decorating since we moved into this place in the spring but this is the first time that Dick has complemented me on what I am doing. That makes everything so much better.

 

I still have no idea how to find a way for me to get away even for a few hours. I cannot afford to get help or take him to a daycare. But I appreciate the suggestions that have been made. Taking him out to do errands seems so overwhelming at times. I really liked the idea Sue had though about giving him a basket to hold in his lap. I have been trying to push wheelchair and pull a shopping cart and ending up with headache and backache. The basket on his lap is a perfect idea for us. Maybe if we limit our purchase to what will fit into the basket, Dick will not have me running so ragged after all sorts of things and we can keep the shopping trips simpler.

 

I have noticed how mornings seem to be other's best time of the day. We don't have mornings anymore. Dick tends to sleep untill late then when he does get up he goes right to sleep in his recliner. "Breakfast" ends up being between noon and 1:30! He goes to bed at midnight. I would love to reclaim our mornings. I have wanted to be able to attend Church but he is never awake in time. Any ideas?

 

Ruth

[swilkinson]

Ruth, do you have late night shopping in your area? A friend of ours who had the same "sleep till noon, wake till midnight" time schedule used to shop after 5pm with a little supper out as her treat.

 

Congratulations on the toilet and bathroom renovations, you are one woman in a million! I can paint and my bathroom has carpet which I replace every six months, it is an old roll of carpet so I just cut another piece to the old pattern and put it in. Ray floods our bathroom too when he showers. We women are versatile, no doubt about it.

 

Our sons are critics sometimes too. I tend to let it all flow and then when they pause for breath ask how they would like to help!! There must be someone in your neighbourhood who can help you out with a few hours hubby-sitting, just keep asking around.

 

Hang in there, you are doing great.

 

Sue.

[jriva]

 

Hi Ruth and Sue,

 

I don't know if this will work with your guys for shopping, but here's what I do at the grocery store: I've found a place where my husband sit in his wheelchair and watch people go through the cashier's lines. He waits there with a cup of coffee while I shop. He has a card in his pocket to give to a cashier that says, "I have difficulty talking and I need my wife. Can you page her over the PA system? Her name is Jean Riva." He's never had to use that card, and he occasionally runs into people we know who will stop and talk to him. It's his favorite thing to do all week, to people watch at the store.

 

Jean

 

[Guest Bonnie Lynn]

Good idea Jean! People watching is always fun!

 

Ruth, Where are you located? In the St. Petersburg, Florida area we have an information phone line that you can call to get help on all sorts of issues. I am the secretary at a church and I always tell people to call "211" on their phone if I don't have the answer to a question. They might be able to help you get in touch with a group of volunteers to help with Dick. Or maybe put you in touch with a low cost assistance program.

 

We also have Neighborly Senior Services. I'm not sure if there is a cost or not but they do Adult Day Care. They can even pick people up in a van if you have transportation problems. I am also a certified hospital clown and have performed for the clients there several times. It looked to me that they always had a lot of fun even when the clowns were not there to entertain them.

 

My husband, Kelley, is 60 and has had three strokes that we know of. We are pretty sure that the first two were sometime since 2002. The bad one was in May of 2004. He has almost no motivation to work on his therapy sessions at home. I have discovered that the line between helping him and letting him do things on his own is very thin! Sometimes I feel like I'm on a tightrope, balancing back and forth. Do I push him? Do I back off and wait for him to do it? If I remind him to do something and he doesn't, is it because he just doesn't want to do it or is it because the stroke has robed him of so much of him memory? sometimes no matter which way I move to balance things out I still go crashing to the floor. Sometimes that darn floor is pretty hard!!

 

But each time that happens I pick myself up and dust myself off. Got to keep on going forward cause there's no way to go back. Maybe next time I'll get it right.

 

Right now, Kelley has developed some more problems with his speech and balance. I think it's possible that he might have had another TIA. I asked him to talk to his doctor about it but he won't tell me if he did. Which usually means that he didn't! And even if he did, is there really anything that can be done about it? He's already on the mets and his doctor feels they are working for him. I guess we'll just up the number from 3 to 4 strokes and keep on keeping on.

 

Take care Ruth! You've come to the right place for emotional support! One of the biggest tips that I have received is to put the day's or week's events on a dry erase board and post it in a prominent place. Ours is on the frige in the kitchen. It has helped me as well as Kelley keep up on what we need to do.

 

Bonnie Lynn

[spokangie]

 

Hello Ruth..May I offer a suggestion to you I am not sure if anyone else has mentioned to you about a power wheelchair..What kind of insurance do you have, did you know that if you have medicare it may be covered entirely. First is he able to manuver a power chair. My husband was right handed and had to re learn to do things with his left hand. After 2 years he is a pro. I got tired of trying to push a wheelchair on the carpet he is 240lbs.. our insurance covered 90% of the cost..When we go out shopping he sometimes will shop with me or wait by the door. Unfortunately our supermarket does not have a coffee shop but even if it did he stayis away from coffee when we are out. He doesn't drink anything this prevents his urge to go to bathroom..often..

We have added another seat to our collection for him this came out on market just a year ago it is called the Big John seat, hope it works as they claim..we will see..

I was housebound just like you for almost a year, I did take short trips though, unfortunately he started having seizures I by chance I timed my outings just when he had one..Yep I found him a couple of times hanging over the chair with a glazed look and vomit everywhere.. Boy did I feel guilty.. my husband is the opposite he is a morning riser, early, it began with 3am then 4 then 5, we are finaly now in bed sometimes till 7;30..I call that sleeping in .

I can happily say that after two years I can leave him for up to 3 hours and he is fine..no accidents no seizures yippeee... Progress..

Even though I can leave him that long I feel guilty for doing it,,I try and incourage him to come with me as much as possible,just to get him away from the boob tube..But in the same token it is nice to know that if I do need that time I can take it.. Give it time,,

We are in the same boat for outside help, his family is nonexistent, more so now that before..financially same as well. I would have to pay anywhere from 17.00 to 22.00 depending on length of time per hour for a person to come and stay..Just not in our budget..I like you had many people respond on how to get help and found that some helped with their suggestions. I know the desperation that you feel like I said been there done that,,but you will find a way.

 

Take care and good luck..

Angie