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Caregiver role vs Wife role

Thursday, August 22, 2013

I have become more and more a caregiver rather than a wife. I don't like this. In fact it makes me angry.

I have not been able to get my husband to take any control of his own life even though he gets mad and yells that he is an adult and he resents everyone else running his life.

I talked to a counselor about this today. If he won't take the least little bit of control then I become totally his (excuse the expression) a$$ wiper and feeder , etc. etc. I really don't mind doing things for him. But I want him to keep as much of himself as he can.

When asked for any decision, he answers that he does not know. "What do you want for lunch?" "Where would you like to go this weekend?" "What do you want the aide to do with you in the next hour or so?" I told him, if he does not tell us, then we will make the decisions.

I said my "dance" with him makes me the decider of absolutely every detail and makes him a total, brainless invalid. This situation makes me angry and I want to change it.

I tried to think of any person in the world who might get him out of his rut. There might be one or two old friends. I will talk to them. I also will talk to the health aides and nursses and physical therapists to force him to be more independent. It is way easier to do it yourself rather than being patient while he struggles to put a shirt on or to wash his face or brush his teeth. People tend to do everything for him. My counselor said I have to sternly tell these people to make hubby do whatever he can even if he struggles.

Talking to the counselor gave me some practical things to do without abandoning him when he struggles with a task. I want to light a fire under him, not send him into a depression. The counselor said the aides need to support me in this, not undermine me.

I need to use short phrases rather than lecturing him like I have been doing. Short phrases like "you are not senile," "you are not helpless," you are not paralyzed," and leave it at that. He might get mad--and probably will. She told me a change won't happen in an instant--black or white. It will be a process and progress will one step forward two steps back, but don't give up on it. It can happen.

He is very unaware of his own needs. He does not ask for things till he is in agony--thirst, pain, hunger, boredom, whatever. He cannot pinpoint why he is uncomfortable. I am not sure what I can do about that. Maybe I can cue him to examine his body and senses. He is not even using the urinal himself regularly. Daily I need to remind him. I have now put a urinal in the living room where he can see it. Today that worked.

This is for his self esteem and mine.

I don't want to be "just" his caregiver. I want to increase my role as his wife.

Wow this is hard! chris
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  • SAMI199
    I am glad you are actively seeking help-it is ok to be angry & frustrated .I know you already know this-but you have to take care of yourself,too.Not always easy.I'll be praying for you & hope that you will get the support of the others caring for your husband.

    1739 days ago
    emoticon We had friends that had this issue until they made the patient go through group "change" sessions. There were children up to adults in this group and all kinds of life changing issues. It made all the difference in the world and the patient said see those kids struggling with such major things was what turned there mind around. I will continue to pray....
    1765 days ago
    Oh Chris -
    Yes - it is difficult and emotional and wears you out and confusing. My siblings and I went through a similar situation with my mother. Sometimes it seemed almost as if an alien had taken over Mom's body. She was no longer the woman we knew and loved and respected. She was often rude, demanding, inconsiderate - things my "real" mother never was. It is clearly caused by the illness/medical condition, but this is frequently no longer the person you know doing the things you expect. It is very difficult to handle. You feel hurt when you do precisely what always used to make them happy and you get yelled at or told off. I need not go on listing symptoms, because that's not solving a thing.

    Delighted you're seeing a counselor to help you with this. The counselor helping us pointed out how angry my mother was that her body was failing her and that she could not do as she wanted. A lot of that anger manifested toward us, her children. She'd refused to do the exercises, treadmill, walking, breathing as the doctors ordered. She kept insisting she didn't need them, but as she sat around day after day after day, she got weaker and weaker. The simple things got harder and harder to do and she continued getting weaker. She refused to see the correlation between her getting tired out so quickly and her muscle tone being shot to heck because she was sitting doing crosswords and needlework and reading and watching TV all day. She was angry about being tired all the time and angry she had no energy and angry she needed us to help her out with shopping and meals and cooking and so on. It was really hard to be there trying to help and have her be so snappy and rude. Not my mother at all. The counselor helped us understand more of what was going on and that it wasn't actually directed at us as much as it was her way of venting her anger and frustration that her body wouldn't cooperate any more. Even so, understanding doesn't change that you feel like you're in some alternate dimension, where the person using THAT face and THAT body isn't the person you thought would be there.

    Take care of yourself in all of this. Use the counselors and whatever other assistances are available to help you. We're here whenever you need to vent, or whine or exclaim over some triumph or victory.
    1766 days ago
    1766 days ago

    Comment edited on: 8/24/2013 10:13:30 AM
    1766 days ago
    Wow Chris what a powerful and important blog. I really respect you making the decision to try and get your husband to take responsibility and make decisions. Maybe it would work if he realizes that there is no WRONG answer to "what do you want for lunch" or other decisions. I think you are doing the right thing, and the counselor had good suggestions. emoticon
    1766 days ago
    It sounds like he may be in a deep depression. Maybe he needs a counselor. emoticon
    1766 days ago
    yes hugs and prayers
    You have a lot on your plate and venting to sparkers is someway to get the couragement to keep goin,.Like at any age mine 67 is tuff and each day my hubby and I look at one another and wonder can we do this. Our children won't be at our side when life gets tuffer. Praying for me helps.
    1766 days ago
    My heart goes out to you. I hope that you can find a way to encourage him to be more independent. emoticon
    1766 days ago
    Where is the "like" button for some of the previous comments ..... many said just what I would say. I do hope you do take time for yourself.... go to another room and do what you like to do best, whether it be reading, cooking, cleaning, talking to friends or napping.... have an "away" time.... thanks for being honest and sharing!
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    1766 days ago

    Comment edited on: 8/23/2013 9:05:06 AM
    be sure to take care of yourself also....... this can get very old very fast so make sure you have some support for yourself.......
    1766 days ago
    Mine is both The thing that bothers me the most is being hollered at over everything You do your best not good enoff for him
    1766 days ago
    HUGS - words are hard to find that might help - I do understand your frustration - I felt the same way with my father - he refused to help himself.
    1766 days ago
    I'm sorry you have to go through this. I don't have any good advice but I think you are doing the right thing by sharing your troubles with the counselor and aides and us.
    1766 days ago
    1766 days ago
    Chris dear, I think everyone has covered what needs to be said ..
    But having said that .. Your situation is different as is mine .. There are no easy answers .. In fact, emoticon emoticon emoticon I think even the experts are not able to help much as each situation is different ..
    Know that I am here for you if you need to chat or vent ..
    Thinking of you both .. Susie.
    1766 days ago
    I hope it gets better for you.
    1766 days ago
    It's great that you spoke to a counselor about your feelings, and that s/he gave you some good advice. Consider that he has become accustomed to you and the aides taking care of him, so he doesn't want to break that habit - the same way a person who overeats doesn't want to change their eating habits. Just like kids need to be encouraged to try while the parents need to have patience while watching the kids struggle, do your best to have patience and encourage your husband to keep trying and work at doing whatever is possible. Remind yourself that you're not there to solve every problem for him because you ARE his wife not just his caregiver. Since putting the urinal near him allowed him to do it himself, think about what other items he asks you to do frequently that you can have ready for him to do himself. Can you put something on his wheelchair that has items he needs in easy reach? Can you set up a small table near where he usually sits that has items he needs on it? If it's right near him perhaps he'll be willing to do more things for himself.
    1766 days ago
    Sorry you are having a hard time. I know it's not easy dealing with it all. My 1st husband was ill for seven years before he passed. I remember carrying tall oxygen tanks around and pushing him in a wheelchair. Sometimes I would do both. I was wondering about your Fibromyalgia, how long have you had it and are you on any of those.... bio-chemical drugs? I just found out I have this and they try and push me towards these drugs. I have been reading up on them all and I don't like the sound of them.
    1766 days ago
    How I understand what you are going thru! I'm going thru much of the same thing now. My hubby is only 63 and I'm 62 but I feel like my life as I knew it is over and there is nothing left but sitting in front of the TV, cooking and cleaning. Hubby can't do much for himself but thankfully he can take care of the bathroom situation so far.

    All I can say is do the best you can, know you're not alone and if you need to vent, I'm here for you. There is such a fine line of what we can say to our hubby's that we will not regret later so talking to someone else and venting is better. Sending hugs and prayers!
    1766 days ago
    Sending love and hugs Chris. My husband is still ambulatory, but mentally he was at that place 15 years ago. It is working very nice to be his girlfriend and date him. Each person has their own choices to make. You still need to be thinking about your back, your sanity and your health. You need to be planning for two years from now. My suggestion would be to sit down and write an IEP for both of you for the next two years and analyze this. Once you have it solid in your mind take it to your counselor and show her what is happening to your health. There are many other alternatives to look at. You might both do well together at an assisted living facility, or possibly a live in caregiver might be helpful, (of course they will either make decisions you don't like or let you do all the work still) or possibly a foster group home would help and you could be his girlfriend again.

    One other thought. The stroke may have impacted the portion of his brain for coping and making decisions. If that is true then counseling for both of you from a stroke expert could be beneficial. Have you connected with a stroke support group?

    Sorry for getting all bossy with you, but I feel so much better and DH is getting so much better care now. It has been a win/win. As special ed teachers we think we have to do it all.

    1766 days ago
    I"m not yet there.... but I have watched this play out over and over. First, my grandparents - Grandma and then a year later, Grandpa. My mom was the POA for them and the main contact with Hospice. Their son - my dad - was out of state on business contract, although he finally walked away from it in time to help take care of his dad.

    Then we went through it with my DH's parents - his dad was 19 years older than his mom, so in the late 1990's he really started declining and finally died in 2000. His wife, my DH's mom, she was in poor health herself, not taking care of herself, and taking care of his dad, her husband, was really wiping her out...and we were doing a lot of this caretaking remotely as they were in Okla (we drove down very often, probably every weekend or two.). We had to put urinals in every room in the house, to help "remind" him. He was already fairly deaf, on top of his age (was 93 when he finally passed on.). And he didn't have a good relationship, IMHO, with his wife - my husband's mom had a lot of difficulties in her life and was constantly recycling the past hurts that she and her husband had. So it was very difficult to keep either of them in the present. And after he died, we ended up taking more an more care of her. We finally moved her to Kansas in 2005 and she died in 2010, just after 10 years, a month past the 10 years since her husband died. That last 5 years was constantly asking what did she want, where did she want to go, what did she want to eat, and it was rare that she could be honest enough to make a choice. Usually she wouldn't, we'd pick a place, and then she'd be upset with us.

    And about that same time, my step-dad was rapidly declining and so I was there with my mom a lot of the time when she was dealing with my step-dad and his health issues (a terribly brittle diabetic, had reoccurring bladder cancers from his smoking days, even though he hadn't smoked in over 20 years, the damages were done. He just would not accept his responsibility in managing his diabetes, and it was always my mom's "fault" etc. etc.

    I've known many other couples where the one spouse was having to deal with similar situation where they were more and more caregiver and less and less spouse - many times they'd tell us, it was like they were grieving for the death of the marriage before the actual death finally happened... and when it did, they were no longer sorrowful. They were just relieved. I know that's pretty much how my husband has been since his mom passed on. Not happy happy joy you, no, but just mourning the loss of his mom that he "remembered", long before she finally passed on - because she'd be mad at him about something, denying that she liked something that he remembered she loved when he was younger, etc - he told me more than once - "this is not the mom I remember. This is the illness we see, filling up the shell that remains of her body."

    So anyway, I know these are all "different" than your situation, but yet similar frustrations and experiences. I don't know every thing you are feeling, and that's okay - you probably won't recognize all your feelings when they happen. You might be numb at times. Now you are angry - and so eventually you'll need to figure out how to deal constructively with your anger. I totally empathize with your situation. It's okay to feel angry - to look at those feelings and realize why you are angry, and then move on to another step in the process. Your feelings don't have to go in any certain order. It's just the ebb and flow of life.

    You're not crazy, you're not alone here, and you are going through a lot right now. Pull in here and rest in quiet waters for a bit, before you go back into the craziness!!

    emoticon emoticon
    1766 days ago
    Hi Chris,
    My husband has had 3 or 4 mini-strokes, and I live in fear of him having a major one. Our doctor, trying to get him to exercise regularly and eat properly, has told Peter that if he has a major stroke he had better hope he dies... But not even that has convinced Peter to take better care of himself.

    I do not want him to have to end his days dependent on me. I don't mean that I wouldn't want to look after him, just that I know how much he would hate to live that way.

    I don't have any answers for you, I'm afraid, just sympathy and a degree of understanding. I'm glad that you can talk to your counsellor, and I hope you can get the aides to support you.

    Take care of yourself. It isn't being selfish to take time for yourself; it's just being sensible.

    Gail emoticon
    1766 days ago

    Comment edited on: 8/22/2013 10:22:02 PM
  • WILDKAT781
    I really don't know what to say...I'll keep you in my thoughts

    1766 days ago
  • LHLADY517
    I have no words to say, but just a virtual hug.
    1766 days ago
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