A Need

[playforfun]

I found over the years alot of helpful information here. I mostly read the questions and aanswers because I don't feel qualified to respond to most.

 

I'm the caregiver to my Wife Susan who stroked 2 years ago. Susan is partially paralyzied on the right side but she can walk. She has very limited use of her right arm. Susan is extremely aphasic and has maybe a 20 word vocabulary and her yes and no answers are right about 50% of the time. Her comprehension is limited but i'm not able to determine how limited. Basically she trapped inside her own head. After 2 years she still isn't able to say my name but she can finally give hers if asked. The minds a funny place.

 

Up until a month ago she was going to a rehab center 4 days a week getting speech and physical therapy until our money ran out. I setup a home gym with alot of the things she had at the center but its missing a critical component and thats companionship. I can't replace the friends and workout buddies shes made over the last 2 years. I did the flash cards and bungalow software on and off over the past 2 years but her frustration and my inability to help reteach her made it so much stress i don't even try very much and I feel guilty. Seeing her frustration and so little improvement just made me want to find something else. She used to love to paint and work in her garden. I set up a room just for painting but shje won't use it unless i'm there. If I leave the room she just quits waiting for me to tell her to go again. When we moved 3 months ago the 1st think I did as build a garden and some flower beds. I helped plant everything and then told her the rest was up to her. She never goes near the gardens unless I go with her. I guess its not something she loves anymore. I need to find something she wants to do and that would give her the drive to stick with it for her sake and my sanity. She wants to volunteer working with other people like herself but without the ability to read/write or speak it can't happen yet. I had her try volunteering in areas where her skills would allow but she always wanted to quit unless she was dealing directly with people. Some centers tried to let her but her comprehension and inabilty to follow a conversation makes it almost impossible. I know she has to be feeling so alone but I can't think of anything else a 42 year old woman can do, at least not anything she can get to on her own and thats what I need. So for now we sit and watch tv, exercise and listen to old time radio shows on cd from the Library.

 

As I read what I wrote i can't believe how little i truely do for her but it doesn't matter. It sounds callous and cruel but I still don't want to go home after work today. I know exactly whats going to happen, I'll cook dinner, take susan thru her arm exercises and then watch TV. I'm ready for a change and i know its not going to happen for years if ever. I want to just go home, have a normal conversation from my wife and hear her say lets go do something. I just don't want to make anymore decisions. I just want to go off by myself for a few days and do nothing or anything. I want to forget about work and everything else that needs to be done. I know its bad but lately there are days when I wish I had the stroke so i could just forget about what needs to be done. Besides being burnt out i feel guilty for not doing enough to prevent what happened, prepare for what happened and how i am not personally strong enough to deal with it anymore. Each week it truely seems to get harder instead of easier.

 

I've read it a million times on the site where it says you need to make time for yourself but its not as easy as actually doing it. Her Sister takes her out every few months for a couple of hours and thats been my break since bringing Susan home. I'd ask her to do more but she already suggested shes doing what she can. And guilt prevents me from asking my family i have closeby. They dropped everything when Susan was in ICU for the 30 days and never left while we were there till she was moved into inpatient rehab. I could have never made it thru that without thier support and I can never repay them. Since Susans been out my Mother has been very ill and they pretty much stopped to help her but never told me anything. I found out she was in the hospital when I called just to see how things were going. They didn't bother telling me because they thought I had enough to deal with. That just made the guilt I feel worse because they didn't allow me to repay thier kindness and let me help. My sister ended up needing surgery and was in the hospital over a week, again they never told me and again i feel i should have been there for her. So before they'll let me start supporting them I need to prove I don't need thier support. How odd it seems now but i'm actually extremely upset with them all for excluding me when i could have at least been there for moral support. Well my pity party is over and back to the grind.

 

 

Bob

[jwatrous]

This is sad for her and you, but it looks like she feels so safe with you that she can't imagine even painting without you. Tell her that you are joined at the heart and NOT the hip, and she must get going, as life is short, so put on your party pants -

Maybe, if someone came into your home, she might change

GOOD LUCK ON THIS

June :cheer:

[jriva]

Hi Bob,

 

My husband is six years out from the stroke and is right side paralysis and uses a wheelchair most of the time. He's got severe aphasia, apraxia and agraphia. His unprompted vocabulary is around 30 words if you include the five new swear words he added this summer and his yes/no replies are about 90% accurate now. Until this summer, I could have counted on the fingers on one hand the number of hours we'd been apart since the stroke. I don't work outside of the house and I didn't go anywhere without him in tow.

 

I really do understand a lot of the emotions you are going through, especially the feelings of not doing enough. I went through that several years ago until I took to heart some advice that a wise OT told me. She said that no one person can do it all---the therapies and exercises, speech homework, take care of the needs of your family, etc.---so, she said, pick the area that's is the most important to you as a couple and concentrate you time in that area. For us, that is speech. Sure I could ride shot gun over my husband and make him do more exercises and therapies than he thinks to do on his own, but this is our lives and we're not in stroke crisis mode anymore. I had to give up the guilt that caregivers get when they don't see vast amounts of improvement happening. It's not our faults, we're only human and even if you quit your job and spent every waking hour with your wife you'd still tend to feel guilty that you can't be everything she needs. It's something you have to work on. I know I did. This summer I've finally started doing something for myself, swimming classes three days a week, and you know what? We're both a lot happier. I come home with new stories to tell and energy I didn't have before. And Don is happy for me.

 

Would it be possible for you to hire a friendly high school girl or college student to keep your wife company while she paints or does gardening? Maybe even a student interested in art who could take her to a community art class or just help her paint at home. This might give you a few guilt free hours a week to get away and do guy things. At the college where my husband goes to speech classes, the student pathologists take side jobs to help with speech. That's another thing you could look into if you live near a campus.

 

When I was sharecaring for my dad and caring for my husband, too, I went through periods where I was despairly searching for things to interest them. I hauled many things home for them to try so I understand how frustrating and hopeless feeling it is that you can't find something that your wife can get passionate about doing. Evenually, with my husband, I quit doing it and around the 3rd year out from the stroke his ability to concentrate must have gotten better and he just sort of started getting interested in things on his own. It could happen that way for your wife, too. I sure hope it does.

 

I'm sorry to hear about your mother. It sounds like you have a nice family even though their good intentions left you feeling even more guilty. Realistically, though, they were right that you probably couldn't have helped much. But you might suggest to them that you can still give moral support over the phone and you'd at least like to know when something is going on.

 

All I have left to say is that you're only one person and no one can take you guilt away from you. You have to be the one to let it go. It's a hard thing to do but I'm hear to tell you that it can be done and both you and your wife will be better off when you are able to complish this very difficult caregiver issue. Guilt will eat you a live if you let it.

 

Jean

[jwatrous]

Bob -

In rereading your letter and response from Jean - Jean is right, you must not blame yourself or Susan Guilt is a heavy burden, and both you and Sue will do much better without it & please remember this is not her fault. -

You should really try to get more help for Susan, this way you'll see her in a different light - she's doing all she can do

June :cheer:

[swilkinson]

I have been caring for my husband Ray for seven years and have been through a lot of what you are going through. I use most of my time now making life interesting for him, doing things that stimulate his interest in life and keeping depression at bay.

 

My answer to you includes doing couple things, going out for a meal, going for picnics, drives in the country, just sitting side-by-side on a lake's edge or river bank, just being together somewhere special has a lot of value for me as a caregiver.

 

You also need to build memories so photographs of where you have been, distance shots, scenery, anything that in years ahead you will be able to say :"This is us having fun". This is a new life you are building together. You can't go back to the old one so you do the best you can with the abilities Susan has and build a new one block by block.

 

It is hard without the support of family. Even if they are nice people they don't necessarily have the emotional energy to deal with what we have to deal with day by day. And yours have been through a lot so just do the best you can with the contact they are willing to make.

 

Cut yourself some slack, relax with Susan and just allow yourself to be with her. I know a lot of the time that is all Ray needs, just me being close by.

[fking]

Bob, I'm glad you are replying and posting since you've been here for a while.

My question to you, without knowing much about aphasia, is do you think your wife is capable of sitting down with you at the computer keyboard?

My thought here is if she can get the hand and fingers moving some, she may get interested in the garden you started for her, thereby adding a word or two she can say or use.

 

On the other hand, if you respond to some of the topics you like, put your 2 cents worth in, you may come away with a different view in the need you feel. Just my unbiased thought.

[arogers]

Dear Bob,

 

I've written a reply, then I've deleted it. I think in many ways your post was your way of venting. We all need to do that now and then, don't we?

 

I know and understand so much of your post because my husband has many of the same deficits as your wife. His vocabulary hasn't been affected, but his ability to put sentences together has since he has very little short-term memory. He, too, wants me with him all the time. I can tell you it's a little better now. I think because I've just decided I can't lie on the bed all day, or sit on the sofa next to him. At one time if I wasn't next to him he'd ask, "where you at, baby?" Drove me crazy, but I'd just tell him I'm "right here". He finally has confidence he isn't alone. He has a real fear of abandonment, so reassurance is important. This may be the case with Sue.

 

I've also finally decided that with some stroke survivors something in the brain has been damaged that allows them to be motivated. Like Jean, I've bought the games, brought out the cards, picked up the flash cards.......but Bill just isn't able to be motivated. I can't control that...I can just love him.

 

This has been another rambling post, but I want you to know we care about your situation. If you've not read many of the caregiver's blogs, do so. You will probably find yourself in them and then you will know you aren't alone - nor is your situation unique. You'll also find some solutions to your frustrations I think. At least that's been my experience.

 

Blessings,

[playforfun]

Thank you for the responses. I wrote that on a week when things were not going especially great. It's easy to forget the progress she has made since we got home. When you live with a person day to day you miss the fact she says or does something new. I had a friend fly in visiting family we had not seen in a year and he pointed out the advances she has made. I forget how unlike alot of people with brain injuries shes happy all the time and gets enjoyment even with the little things she does. Yesterday she said blue when i asked her what color the sky was, the 1st time in 2 years she got it right and the look on her face was pure delight. Her lopsided grin didn't go away for hours. I got my perspective back and am looking at the upside of things again. Thank you for your kind responses and for getting my perspective straight. I look forward to the day Susan can come online and join the group.

 

Thanks Bob

 

 

[cindy]

Hi Bob,

 

I know how it is when you have those days where you just need to vent. I've done it many, many times around here where I found kindred spirits and people who know exactly how I'm feeling and what I'm going through.

 

My husband, (stroked in Jan. 2003) never wanted me to leave him and only wanted to be around me. I would ask his son to take him lunch or just go out to the port where he loved to go before the stroke and he would not go. Then one day I said you're going, period. So he went and actually enjoyed himself. That was the start of much better things to come.

 

He's much more independant now and can do a whole lot more than after the 2 year period. He also has aphasia, (right side affected) but can walk and drive now. He cooks, cleans, does laundry, etc.

 

Man......so many times I just wanted to run, run, run and not come home. If it's possible maybe you could take off work early sometimes and do something for yourself. It sure helped me when I knew he would be okay at home by himself. Then it got to the point where I could take a week-end and go with my girlfriends to a hotel because I taught him how to answer the phone when I called him. His speech was limited too, but it would be a place close by where I could go check on him for an hour or so during the day or at night before he went to bed.

 

Wow, what rambling!!!! Good luck and take care of you.

 

Cindy

 

P.S. There were so many time I was ridden with guilt and it was awful. I learned through this site and with the help of a therapist to STOP IT and take time for me.

[lisas]

Hi BOb, :chat:

 

It's great that your wife has such a caring husband. :big_grin: There are good and bad days. We treasure the good , and get through the bad. I am caretaker to my 22 year old daughter-Rachel. She stroked in Feb. 06. We are thankful for each new accomplishment, :Clap-Hands: and very sad when we have bad days. :Tantrum: Lots of prayers later,and we go on. Good Luck to you and your wife. :Good-Luck: