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.
Where I live, serious heart surgery is often followed by a STRONG recommendation for antidepressants. Is your husband on one?
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).
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.
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.
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.
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.
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.
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.
Good luck. You've done a fantastic job, but you've got to take care of yourself too.
I think that I would schedule lunch with your friends. It’s important for you to have a social life. You aren’t neglecting him by going out for a couple of hours.
Better still, hire someone to stay with your husband for a four hour shift and go to lunch and perhaps a walk in the park or shopping afterwards. Buy a new outfit to wear to the next time you go out to lunch with friends.
Best wishes to you and your husband. You are stretching yourself too thinly. You can only do so much before you begin to burn out.
and I’m sorry you’ve gotten to this point of being so very tired that you see that you’re beginning to lose it.
I have never been in your shoes, however, you sound like you have Caregiver burn out and and are in a bit of a rut. Sounds like he’s become comfortable with you being his only caregiver and rather demanding about it.
can he be at all reasonable about what you were going through? Have he talked to him about it? You haven’t mention whether you have or not. So, I’m going to assume you haven’t and that’s the first place to start. let him know how much you need help.
The person needing help goes through a cycle similar to those having to face death. The initial acceptance, then the anger, denial, depression, fighting back to acceptance. And it comes and goes, it’s up and down.
so they will never 100% of the time be OK with their situation and thus be OK that you need a break-regular breaks- to keep your sanity. They just don’t. And this is where you have to get the gumption to start and do something for yourself.
bring in a caregiver to support you. You can start out slowly, by staying and working with caregiver so he gets comfortable with another person and to find a personality match before you start going out alone.
You’ll get the camaraderie of someone else who understands you and they’ll listen to you, they’ll support you and they’ll help you so you’re not alone.
Hard as it will be if you insist this is the way it has to be he will eventually tolerate it if not accept it.
You didn’t mention how his personality was before all this, I’m going to assume he was more loving and pleasant. Funny thing is, as much as he wants you there 24/7 he also may resent it because he knows he’s not being the husband he wanted to be. So if you get a caregiver in there it gives him somebody new to talk to because he’s probably isolated himself and a part of him won’t feel that he’s burdening you so much. And hopefully this will help him be more compassionate towards you and his family.
Also, get into a face-to-face support group on an ongoing basis if you can. There are online groups in a place called Meetup. It’s simply people trying to meet others with common interests. Overtime I have joined a dog training group, an Irish background group, photography, sailing and a book group.
Thanks for reaching out and keep doing it. And take care of yourself PLEASE before you don’t wanna be there for him at all anymore.
I have nothing to advise on this except to say that my sense of knowing where you are was immediately activated. When you said you wanted to throw the BP monitor out the window -- I have felt a number of times that I wanted to stop giving him his heart meds. And this is based a lot on love: dementia is a horror state and the thought of my beloved husband living on with it or with the other physical issues he's experiencing is just heart-breaking...I spend some time almost every day crying to myself in bed as I imagine it. I don't want it to continue. I've even wished that I could be diagnosed (I'm 73) with some kind of terminal disease so that I could say "no treatment" and then be eligible for Right-to-Die assistance in my state -- and as I say, I haven't been through a fraction of what you've experienced. I wish I had an answer. Maybe the only real answer is that NOTHING is going to go on forever. A neighbor dropped dead very suddenly a few months ago and I've found myself envying her. Out of complete love I wish the same could happen to my husband; and often I wish it could happen to me.
Many hugs to a brave person...
I got myself into Nar-Anon and we invited NA members to be guest speakers; that's where we learned about addiction and how to establish boundaries of self protection. The reality of the problem was that we could stop the pain, but only if we got off the roller-coaster.
Please have your husband evaluated for placement and let the professionals take your burdens off your shoulders. Allow yourself to be a delightful visitor instead of being a caretaker. Contact an Elder Law Attorney for legal and financial information. Seek out a Geriatric Psychiatrist who understands mental health issues that rob you of energy and clarity, they can prescribe medications that can help both of you.
But now.
We have here a grown man who is freaking out over every little finger ache....who is now refusing to try....refusing to put forth any effort....refusing to pursue a fulfilling life....and then trying to pull you into his misery.
He's wrecking your well-being and the peace in your home.
And I don't blame you for being angry, because that's not love.
Has he always been selfish and self-centered and possessive of you?
I don't know what to tell you to do, but you need to do something before you are the one who is sick.
“Every twinge requires at trip to the ER or a doctor appt. or both”. No, it doesn’t. “He has been reassured multiple times by multiple doctors his heart is fine, with very little damage, and the stents are doing their job”. So ignore those twinges. If he wants to go to ER or to see a doctor, let him organise it himself.
“He always needs me near him”. No he doesn’t. He is not a terminal patient at end of life. He “becomes angry and miserable if I dare to leave the house for pleasure”. So what? Go out, and let him be angry and miserable all by himself. Sympathy for his misery is a pointless waste of time.
“He gets furious if I have a meeting ... a phone call”. Oh dear, how sad!!! Then ‘of course’ … “his b/p skyrockets turning it into emergency”. No it’s not an emergency, particularly for you. If he deliberately kills himself by being stupid, it will solve a lot of problems… for both of you.
You have been too competent and too kind for too long. You clearly have brains, so use them.
I am noticing in your profile that you are the child of a narcissistic mother who creates drama where none exists
Thing is, it seems like your husband is doing the same thing.
Consider getting some therapy for you, to learn how to temper your reactions to folks who are attention suckers.
His anger may be caused by fear, but it doesn’t make it easier for you. perhaps you can start by setting a modest schedule for yourself - say a couple times a week you’ll be out for a couple hours - but you’re no farther than a phone call away. And don’t debate it.
My late partner controlled his late wife this way - he wasn’t ill. It was hard for him to accept that I’d go out in my own, but he didn’t have a choice. Your husband is ill, but that doesn’t give him the right to control your every move. I hope he learns compassion & you learn to stand up for yourself. If the time comes & he truly requires more help, I hope he is open to it.