Spousal care

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This topic contains 9 replies, has 8 voices, and was last updated by  Gina_Courvelle_Hogue 4 months ago.

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  • #30793 Reply
    Profile photo of Cori Carl
    Cori Carl
    Keymaster

    Taking care of your spouse? How has your relationship changed after you became a caregiver?

  • #30797 Reply

    Jo

    My husband is 69 now..cannot walk well on his own, needs help with transfers, bed baths, wears “Depends”. I am more of a caregiver than wife lately. One day he was talking to me about his “wife” because he became confused. I think he thought I was just the caregiver. Sometimes I have resentment that I have to do everything, but I have to remember that he cannot even walk and he would do more if he could. It is hard to have patience sometimes when he is so slow in his thinking and moving. Hooefully I will be getting a bit more help soon! He says I act like a mother to him. I have to back off sometimes and letbhim try to do more himself.It is hard sometines for him to realize I have to be a caregiver too.

  • #30860 Reply

    Terry Webb

    I am caring for mu husband, a disabled Vietnam veteran with all that implies. Our relationship took a turn in 2008 and we have not been intimate since then. I told his counselor I felt like a caretaker and he has never forgotten. But recently, he became very sick and I had to do everything for him for about 4 months. I really didn’t mind because I could express my love for him in many ways. Not that it wasn’t hard. It was, especially not to let him see how sad I was or tired or scared or worried. Thank Heaven I have friends I can vent to. There has been no help from family or even his friend that stays with us. He was preparing for the worst and had to protect himself. Well, Im glad my husband recovered or he would have lost the precious time with him. We had home care this time and it really helped. When it looked like I was going to need help, they brought in whoever I needed to get me the help I needed.

  • #43306 Reply
    Profile photo of Barbara Tarallo
    Barbara Tarallo
    Participant

    The day my husband had his second TBI, our lives changed forever. We are in our early 50’s and from that day forward, I stopped being his wife and became first his advocate, then his caregiver, and now I am more like his mother. I often tell his therapists, how would you like it if your wife was constantly telling you what to do? I can definitely relate to your story Jo, many times my husband will talk about his wife to me. I also have resentment and also feel guilty about that…after all “for better or worse, sickness and health” right?! And patience is hard when you have so much to do in a day and he is so slow. But day by day I am learning to have patience and when he gives me a hug or makes me laugh or says thank you for taking such good care of me, I remember all the things he has done for us (his family) and I love him that much more. I am still his wife…and his advocate….and his therapist….and his mother. And it is ok!

  • #50659 Reply

    ruth

    I can so relate to the lady whose husband has a serious TBI. My husband’s TBI totally changed the dynamics of our marital relationship. All I can say is that I am learning and practising patience and have attended to my need for companionship and conversation with friends. It really does pay to see the funny side of things, and to not sweat the small stuff…like a kilo of spilt sugar on the floor or the door never ever being closed to keep the heat in…this last challenge has taught me to be realistic, and just (constantly) to get up and close it without getting angry. Life is too short to be eaten away by anger…one must be realistic – life and relationships are in constant flux.

  • #50662 Reply
    Profile photo of Susan
    Susan
    Participant

    Good Morning!

    My husband has GBM stage 4… He had the tumor removed July28 2015… He lost a little bit of his cognitive abilities. But instead of getting better, it seems to very slowly get worse. Only “I” see this though. Our relationship is that where we love each other, But it seems to be in different ways. We have been married for 38 years. But sometimes I feel part wife / part maid/ part cook / and I work part time.

    Since he gets a lot of words wrong, I try to help him by saying ” I think you mean ___ ” And he hates it and walks to another room. But it’s so hard not to do that. What did I do?

    Susan

  • #61260 Reply
    Profile photo of Lulu
    Lulu
    Participant

    I’m so tired.

    Tonight my husband and I are arguing. It’s late. Earlier he needed batteries for the remote. I opened a package I had in my backpack. 3 hours later I go to busy the remote. No batteries. He is stubbornly telling me I never gave him any batteries he’s angry at me. He is a proud man, Vietnam vet. 6 strokes, now legally blind as well.

    What can I do? We go to therapy twice a month, we just spoke to the neurologist. He knows he had memory issues. But most the time is very defensive and angry when it one to the surface. Help. I’m so tired and run down.

  • #62487 Reply
    Profile photo of Rodney
    Rodney
    Participant

    Hi, I introduced myself on this site about 1 1/2 years ago, and haven’t really been active at all.

    I met a caregiver Buddy , Jan, and she was an angel in disguise during the hardest time of my life, but let me tell you a bit more, it is about Barbie , my wife.

    Barbie and I met on a blind date, I was with a good friend who wanted to date a particular girl and she him, when my date cancelled . After a few calls I found myself in the driveway of Barbie’s parents. I will never forget seeing her for the first time, she was 18 , tall slim and as pretty as a Irish girl could be , long wavy hair and a smile that light up anyone’s day. That was on a Friday night, I asked Barb out for Saturday evening and we met again on Sunday for a drive around town.

    We were pretty much inseparable from then on, I was here escort at her High School graduation and more or less followed her by enrolling in a tech college in the same town she was going to University in. Three years later , she was 21 and I 22 and I asked her to marry me, she said yes and we made plans for a August wedding.

    Two beautiful Daughters , Holly and Emmaline and a tall handsome son named Matthew and our family was complete. Barb worked in potato research , 37 years as a matter of fact and the early years allowed her to be home 12 weeks a year , you see Barb was a wonderful mother and hated everyday that we had to leave our children with someone else.

    My career blossomed a few years back, I traveled globally a lot, but Barb and I talked every day , texted many times and would Skype in the evenings. I missed her each and every time I stepped onto a plane and always rushed home to her, to see that beautiful smile, hold the women I had loved from first sight and enjoy a home and life that Barb and I built with our own hands. We had planned that she would retire early , ( actually next year ) and travel with me so I could continue my climb up the ladder in a job that I was blessed with , being content and happy.

    July 26 of 2015 I arrived home from Montreal, walked thru the door and Barb asked me to come up stairs , she closed the bedroom door and we sat and both cried when she told me the news. That day rocked me to the deepest part of my being, we knew the prognosis would not be good, and after a week of tests Barb was given 4-6 months .

    I was fortunate in that I could work from home, and became Barbie’s caregiver. She started some treatments in September and had to stop in June of 2016 , nothing worked , her cancer had spread into her lungs and Barb made the decision not to go any further, enjoy the time she had and not put herself thru hell with little gain. All the medical team that helped Barb to that point were in awe, she was some determined to live and at times I would fool myself by thinking that maybe, just maybe she could somehow beat this terrible disease.

    That summer was one of the best we had ever spent , by August Barb was strong enough to spend all day out in the garden, sitting on a bench and simply breathing in all the life she could. I did renovations to the house, little things that she had wanted to do over the years. We always enjoyed working together, even though she couldn’t do much , it was fun, we laughed and at times it almost seemed like our life was going to be normal.

    A Christmas that she didn’t expect to see and Barb was sure she would live to see her plants come up here in the Northeast spring, but in January things took a turn for the worse, her appetite was dwindling and she was losing weight fast , struggling with pain and at times not really aware of what was happening in her surroundings.

    Sunday morning, March 5th , Barb passed away here at home. Her health was declining fast the last week or two and at the end we were administering pain meds thru butterfly’s in each leg hourly, I didn’t sleep for the last 3 days, I knew Barbie’s end was near and needed to be with her , help her in anyway I could.

    She died in my arms, that Sunday morning , with my tears falling on her beautiful hair that had been growing back over the past few months. I knew it would happen, but it simply tore a part from my soul and took it with her when she passed that I never expected, the loss runs so deep that no one can describe it, but only know if they to lose some one so close, as Barbie was to me.

    This is most likely the last post for me, I need to somehow move on from this loss and I so wanted top leave you with a piece of advice that could help you thru the tough times your in, or the tough time to come, but there isn’t , I cant find it . It doesn’t exist, because you are a caregiver means you already know what to do , and you are already doing it

    Rodney

  • #62620 Reply

    Elizabeth Gallagher
    Participant

    Are you a caregiver for your spouse?

    We are interested in understanding the experience of being a spousal caregiver.

    This project includes an approximately one-hour interview.

    Participants will receive a $15 Target gift card!

    Please contact us if you are interested or for more information
    Elizabeth Gallagher
    Saint Anselm College
    Egallagher@anselm.edu
    339-832-1153

  • #62660 Reply

    I am 70 years old and the spouse of a quadriplegic, 100% dependent. I have been his only caregiver for 16 years. I get very tired. Thankfully I get respite 3 times a year for 10 days each. It is getting almost impossible to turn him. If I could only have someone come to get him up and on his toilet/chair in the morning I can handle the rest. Would be ideal if they could put him to bed too, but I will settle for help getting him up.

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