I am a new member and am very grateful to have found this group. I have recently had to conclude that I am my husband's caregiver. He suffers from depression, panic attacks, social anxiety, diabetes, heart problems (triple bypass in 2009), COPD, and probably a few others I've forgotten. He is classified as a "noncompliant patient" and honestly doesn't do any of the things that he could do to improve his health. He has not been employed in 17 years and doesn't have disability. Thank goodness that I have a great full-time job with benefits as well as a second part-time teaching job.
We are currently waiting for our first appointment with a different psychopharmacologist, as the previous one has become increasingly unavailable and totally nonresponsive over the past two months. My husband's psychologist suspects that some of my husband's current mental state may be due to over-medication.
My husband sleeps about 16-20 hours a day, watches TV the rest of the time, refuses to go almost anywhere without me (except to buy cigarettes and ice cream), won't follow good nutritional guidelines for his diabetes, has quit physical therapy, and won't even do the seated exercises that were prescribed for him.
We don't have children and none of our other family members live nearby. He has a few friends who come to see him and try to help but they are frustrated.
Needless to say, I am frustrated too! I hope that I can learn some coping techniques from this group and any other resources or books to which you can refer me.
Thanks,
Caroline
New Member Introduction
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Re: New Member IntroductionWelcome, Caroline, to our safe haven.
It sounds like your frustration is totally appropriate, given the situation you have described. I'm wondering if you might also be feeling rather angry. Coping techniques...well, there's always benefit in knowing what you can control and what you can't. There's not a whole lot of his behavior that you can change, but you do have control over how you react to his decisions. Someone on this board once said that our spouses are entitled to "do their illnesses their own way". Self-determination and all those lofty ideals. That does NOT mean that you have to go down with his sinking ship. You can emotionally detach and protect your own health and identity. You do not have to sacrifice your life for a spouse who insists on making bad choices. He needs to do what he can to get better if he wants you to be his caregiver. He needs to do all that he can to keep the marriage a reciprocal partnership. Anyway, we are glad that you've found us! Best of luck with the new doc! Caregiver for 30+ years to C-4 quadriplegic shot during a robbery at age 21. He practices law full time; we have two 20-something sons.
Re: New Member IntroductionA warm welcome Caroline.
Yes, you certainly are a WS and I am so glad you found us. Just knowing that our situations are not unique and that others are walking the same difficult road as we are, was already a big help to me. I'll echo Dorothy's well put words. It's useless to try to change an uncooperative spouse (I should know) but we can do a lot of things that help us cope, mainly taking good care of ourselves and emotionally removing ourselves from their bad choices and bad humour. Glad you have a job that you seem to like which leads me to believe that you have a busy, gratifying life outside of the home, that's wonderful!! Hope the new doctor adjusts your IS's meds and he begins to want to be more active. A big hug of welcome, Claudia WS 70,IS 74, PPMS 25+ years.
Re: New Member IntroductionWelcome Caroline. I'm glad you have found WS.
Your situation sounds very frustrating, but it sounds you are on the right track seeing a different doctor. WS 55 IS 48 C3 Spinal Cord Injury 2008 fall from apple tree. Paralyzed below neck with trach. Many respiratory and some cognitive issues. Diabetes Type 1.
Re: New Member IntroductionWelcome Caroline. By now you know you're welcome and in the right place. You'll find amazing support here - and amazing people. Join us whenever the need dictates or you just want to chat.
IS with PTSD who is seeing a VA counselor. Good days, bad days and ugly days.
Re: New Member IntroductionWelcome Caroline,
Glad you have found this supportive community. GB Together 35 years, the early ones uncomplicated. Now, on a journey unanticipated. No map, indeed no clear destination, just finding our way.
Re: New Member IntroductionWelcome to the family, Caroline. You will find much caring and knowledge here.
WS (59) to IS (67) Separated. Parapelegic from injuries suffered in Viet Nam in 1967. PTSD, Chronic pain... too many surgeries to mention.
Re: New Member IntroductionWelcome Caroline,
I could have written a lot of your post, except that the depression, social anxieties and staying in bed all day stopped with his strokes. My husband thought he qualified for disability after his second stroke but he refused to go to the doctor after that one. Fortunately, I too have a teaching job with good benefits that I love. I found the stuff before the stroke much harder to deal with than the physical stuff since then. As Dorothy suggested, it made me very angry. Frustration with his partial non-compliance I'm learning to deal with, but it has made me very angry at times, too. You have all that all at the same time. It's a lot to deal with. Having people here who "get it" and give you spot-on advice when you ask for it is a life-saver. I'm sorry you have to be here, but it's a wonderfully caring and supportive place to be. WS 62, IS 62, 2 strokes '07, not severe, diabetes 2, retinopathy, dialysis, enlarged heart
Re: New Member IntroductionWelcome, Caroline. I'm glad you found us. You must be a very patient WS to put up with so much. I also echo Dorothy's excellent comments.
My IS has MS. He's also made a lot of choices I didn't agree with. He's retired now and living with the consequences of his decisions ... or lack of decisions. It's frustrating for me that he wants to be in charge but not much happens when he is. He doesn't like most of my decisions either but I'm not letting the MonSter take us both out without a fight. I couldn't survive without WSA. Please make yourself at home here and post whenever you feel like it. Someone is always here for you. Here are some WS hugs - ((((((Caroline)))))) MS dx in '86 while expecting WC3; WC4 followed while in optimistic denial promoted by MS Society.
IS currently bed/wc bound; limited use of only one hand; self caths; still in denial enabled by cognitive decline.
Re: New Member IntroductionWelcome Caroline.
I think you have come to the right place. I dealt with many of the same things you are dealing with. You might want to post in Health and Healing where even more people are around to respond. Even though there were ways in which my spouse was not compliant, there were things I had done for myself before the caregiving started that I just didn't give up. I suspect that is what allowed me to let her do what she chose about many things. The people here have been right there any time I needed them. FIS died 9/1/08. It was her CHF, COPD, and Atrial Fibrulation that hospitalized her the last time. Both WS and FIS are women who retired in 1997 and had lived together almost 19 years.
Re: New Member IntroductionHi Caroline - welcome to our family.
I know you can always detach, but there are other methods available to you also. I offer this only as another option. However you decide to handle your relationship will be right for YOU. But do some research first, and do not make an early determination that you must sublimate YOURSELF to provide care for your IS. Neither should you be a servant or slave. Do not be guilted into providing care, or allowing him to act in a destructive manner THAT IMPACTS YOU! YOU are the majority stockholder in this relationship. You are the caregiver as well as the breadwinner. As you say your IS does nothing without you except feed his addictions. Meanwhile, as a true and caring spouse you enable him and allow the status quo - non-compliance, refusal to perform exercises, etc. You need to draw some lines in the sand. You need to set some boundaries. Rewards and punishments work, just like with a child. "I will do xxxx, provided you do xxxx" I sincerely suggest that you read the Travland's book, "Tough and Tender Caregiver", it may give you some much needed input. We are here for you whenever you need us. By your screen-name I see you as a 'brunette" - oh well, I guess my sixth-sense 'could' be off a little! Larry Be thankful the thornbushes have roses!
Deb and Larry 4-16-67 1-22-13 President Well Spouse Association - BECOME A SUPPORTING MEMBER so that we can serve others in need
Re: New Member IntroductionYou found a wonderful place with wonderful people who care. welcome!
If I spend the time worrying what might happen tomorrow, I will miss the Joy and laughter and happiness that is in front of me today.
Benjamin
Re: New Member Introductionwelcome {{{{{{{{Caroline}}}}}}}}
Becky- WS: 35, multiple autoimmune issues, incl. hypothyroidism & gluten intolerance IS: 37, born w/ Spastic CP- legally blind & uses wheelchair; C7 vertebrae fused Aug 2007, cont'd back problems; Married since June 1998.
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