My husband and I are in our 60's, so not so old, but I feel much older most of the time. For 43 years, I have taken on the increasingly exhausting role of his caretaker. He had type 1 diabetes, which later caused kidney disease in his 40's. We followed every appropriate diet, did most of the right things, as the kidney disease progressed the nephrologist suggested a kidney transplant for him. I worked tirelessly to make that happen. He ended up with a pancreas and a kidney right before his 50th birthday. I was able to get an out of network hospital approved for this because of their success rate, which meant I then had to drive 2 hours for all his post operative care several days a week and lessening over time. 11 months after the transplant he had symptoms of Lymphoma, and had a perforation in his bowel while hospitalized, and required immediate surgery and another 17-day hospital stay. We then transferred his care to another facility an hour closer to home where he received chemo and ongoing transplant care. We got through it all, and I was still working full-time at a very demanding career. Somehow, we managed. Since then, he has random issues, medication adjustments, diet changes. Two years ago, he had chest pain, was treated for acid reflux for a month or two with no change to the symptoms. He ended up having 2 heart attacks and 2 stents placed. These last two years have been a nightmare. He has almost stopped living, watches tv constantly. Every twinge requires at trip to the ER or a doctor appt. or both. He has been reassured multiple times by multiple doctors his heart is fine, with very little damage, and the stents are doing their job. We eat twigs and berries, we are both underweight, we follow every directive. He always needs me near him and becomes angry and miserable if I dare to leave the house for pleasure. Lunch with a friend, or whatever. I have been retired for about a year and am on the Board of a Comfort Care home and spend time doing board work mostly from home. He gets furious if I have a meeting to attend or receive a phone call related to my volunteer work, and of course his b/p skyrockets turning it into emergency. When I had a paying job, it was okay with him because I was bringing in some money. First let me say, I was the one with a career and a great pension. Most of our monthly income is from my planning for this phase in life. This can't continue. I have no life most of the time, my compassion is gone. When I hear the blood pressure monitor start its humming, I want to go throw it out the window. Our adult children are somewhat helpful, but none of them want any time alone with their father, he gets nasty or ignores them. All very strange. It feels like I jump through every hoop and pursue every medical solution available to him, and he is a miserable and demanding person who has basically given up on life and expects me to do that, too. Suggestions please! He has been through a lot, but I have been right there beside him every single day. It's a lot, and I am tired and becoming angry.

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Sounds like dh has become a professional patient in need of a full time NURSE instead of a wife now. Issue him a choice: he either gets help for his depression and anxiety issues so he can enjoy the new life he's been granted, or he can check into a SNF for 24/7 care by a nursing staff cuz you're done.

My dh had a liver transplant last year, preceded by a pacemaker and triple bypass surgery. There were a few complications associated with each, but he never used them as an excuse for a pity party or to be overly demanding of my time. It's not their "right" to do such a thing. What the caregiver goes thru in these situations is mind blowing.

My dh is now in a situation where he's been caring for me the past 4 months, quite extensively. I know the mutual respect we've shown one another the past few years throughout the health crises has gone a long way towards having the willingness to DO the caregiving. It's hard work, I know.

See about a psych evaluation for dh and go from there. An anti depression med may be just what he needs to feel better, and for both of you to ditch the twigs and buy a quart of Hagen Dasz.
Helpful Answer (19)
Reply to lealonnie1
Lizhappens May 25, 2023
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It is my 5th welcome to a new member of Forum this morning! We are suddenly so popular I can't keep up. But once again, welcome to Forum Mama. So glad you are here. You are now an expert who is needed for answers to others dealing with all you are dealing with, and I hope you will stay.

I am exhausted with just reading your story. Diabetes, esp type I, is a crucible, effecting every crucial system we have and no one knows and understands that better than you do.

As to an answer to the constant onslaught on one we love over the years--and on yourself as collateral damage-- I just wish I had one. I think this is work for a LSW in private practice. I often suggest social workers over pyschologists to help us over tough life issues/transitions work because they leave all the Freudian theory out, and instead help you with where you are today. And people dealing with all you and hubby are dealing with now need all the help, all the guidance to resources you can get.

The sad truth is that your retirement isn't likely to be the joyful time of freedom people look forward to all their lives. This happens more often than we think. For many illness comes and it is more a holding heads above water than freedom. I wish I had an answer to what life can lob onto our plates, but I don't. You likely absolutely love your work as Board Member; it is a respite for you. And I hope there is a way you can still manage it and give care.

I can't know what your resources are, but if there are any, you are going to need all the help you can get.

I wish you the best. I wish I had answers for you and I hope some here might. My heart goes out to you.
Helpful Answer (13)
Reply to AlvaDeer

Has your husband been evaluated by a psychiatrist? This sounds like an issue of depression and anxiety.

Where I live, serious heart surgery is often followed by a STRONG recommendation for antidepressants. Is your husband on one?
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Reply to BarbBrooklyn

Agree with BarbBrooklyn's query about depression and antidepressants.

Also, some of the symptoms you mention sound like ALZ or other dementia (eg: "Shadowing" is a behavior where they don't want you out of their sight, ever), zoning out in front of the tv, being inappropriately nasty. Dementia gradually robs a person of their ability to use logic and reason and therefore impacts their ability to have good judgment; they become paranoid; causes them to lose their ability to empathize and they become demanding narcissists; affects their concept of time and space; and often includes memory loss.

You may want to consider getting him a cognitive/memory exam so that you can at least discount this as a cause. I wish you all the best. Please make self-care a priority, even if it makes you feel guilty (also, don't feel guilty... you've done yeoman's work to this point).
Helpful Answer (12)
Reply to Geaton777

Get social workers for both yourself and your husband. You are his wife, not his unpaid, caregiving slave. You need to get your life back for what you worked hard for and professional care for your husband.
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Reply to Patathome01

I agree with Lea. He is spoiled. Lay down the law. Tell him "if it wasn't for me you probably would not be sitting in that chair. I have worked hard to keep you alive. Now that I am retired I am entitled to do things for myself. If you don't like it, tough. You don't have the right to tell me what I can and can't do after all I have done for you"

Your profile mentions ur mother lives next door. You tell her the same thing. The book suggested, Boundaries by Townsend and Cloud, is Christian based. You know honoring people goes both ways.
Helpful Answer (10)
Reply to JoAnn29

I am so sorry for this very difficult life of yours and it sounds like you have done everything possible for him. Your poor husband has had such challenges and I am sure his anger comes from his loss of
independence and maybe ptsd.

Maybe some mild medication will help him.

You are overwhelmed and burnt out. I know because I have been there. Please set some boundaries and hire part time sitters so you can get out. Yes, he will be mad but you deserve a life too. You cannot continue like this.
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Reply to InFamilyService

You need to set boundaries for yourself. Read the book Boundaries by Townsend and Cloud and remember the boundaries are yours, for you, not another person. They function like a fence around your life, keeping our what you don’t need or want, but with a gate to let in the things that are good. And your husband needs a more complete medical evaluation that includes testing for depression and anxiety. It’s likely he needs medication for this. You shouldn’t be living life tiptoeing around his behaviors and anger. You should be eating the way you want and need and be spending your time the way you choose, all without apology. You matter too
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Reply to Daughterof1930

You have taken excellent care of your husband for so many years. That’s really a beautiful thing. However your marriage is not really a marriage anymore. It is a caregiving arrangement and it’s been that way for many years.. What you describe sounds soul sucking.

You need to think about your needs. What is it you would like to do that will give you some pleasure and joy to your life? Figure that out and sit down and have a heart to heart about this with him. Tell him how you feel and what you need. You need him to realize that he needs to support you a bit too.

Don’t put this off. Do it now.
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Reply to Hothouseflower

I haven’t experienced this personally, but I definitely have noticed the dynamic in a marriage or LTR of the “sick one” and the “healthy one”, and how clearly defined those roles can be, and how all-encompassing in terms of how each partner is perceived by themselves, their partner and outsiders.

On and on for years, sick one and healthy one. Sick one (understandably) gets the lion’s share of attention, time, resources; healthy one gives and gives. And then suddenly something happens to the healthy one.
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Reply to SnoopyLove

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