I am angry at my husband.

di9747 · ‎03-06-2017

I know I'm going to sound not very nice, but I'm angry, enraged, furious at my husband (for whom I am caregiver) and I'm not sure what to do about it. So here’s my rant.

He is 77 and I am 70 and his caregiver. It's not 24/7 but close to it and I never know when the next emergency (real or imagined) is going to strike so I don't get to relax much.

Here’s my husband’s situation:

He had 2 stents put in 9 years ago, a TIA 24 hours later, was diagnosed with Parkinson's 6 months later. Ove the 9 years, he totally ignored doctor’s advice to exercise, or eat properly or do anything else proactive.

A couple of years later developed back pain (xray shows a minimal amount of arthritis) which led him to use Diclofenac for pain, even though I told him he should probably start with Advil or Aleve since the one he was taking had risk of stomach perforation. Big surprise, he then had a stomach perforation, which led to A-Fib.

We just spent $30,000 to fix his teeth because his hygiene was so bad and yet still doesn’t brush more than twice a week and never flosses (and complains about my spending $150 on twice a year teeth cleaning and checkups).

Just had a heart attack, two stents and 2 weeks in hospital, then a return to the ER because the mix of meds messed with his mind badly.

Thanks to all this I’ve learned a lot about cardiology, neurology and pharmacy, as well as gastroenterology. Enough so most Drs ask if I’m a doctor. I spend 24 /7 with him when he’s hospitalized because he is a difficult patient. On the January 2 week stint, security was called 3 times. My self assigned job is to not let him hurt the staff assigned to him and to make sure that the meds and procedures being used on him are appropriate. Some staff want to knock him day and night out to avoid having to deal with him. I understand that this is mostly sundowning, and I know I should be empathetic and realize it’s not really him., but while it’s going on, I’m the bad guy, imprisoning him in the hospital. I’ve been punched, hair pulled, had fingers bend back to break them, and knocked down on the floor. More importantly the sundowning behavior is just a worse version of the living at home stuff that I deal with. No physicality (yet, but he’s had hallucinations of having a gun tucked in the back of his pants – gun is now out of the house). Oh yes, and his memory is going so he argues with me about things I’ve already told him, instead of accepting it.

He tells me I’m not supportive, yet sort out his meds, give them to him, help him dress and undress, wake up in the middle of the night when he gets confused about where he is and direct him to where he wants to be, cover him back up when he goes to bed, am ready to leave family or social events the instant he says he’s tired, I fetch and carry for him, feed him 3 meals a day, handle almost everything involved in running a household, fix his go to every doctor appt he has. He’s clingy and needy and wants me to sit with him a lot which I do – but can’t alway because I’m cooking or caring for pets or whatever.

My situation:

I’m not a natural caregiver. It’s not really an interest of mine but I can care for someone I love in the short run (an illness, a hospital stay). My life focus has been on prevention and wellness. So at 70 I have a lot of energy and in spite of high blood pressure, low thyroid and bone-on-bone arthritis in several joints am doing very well. I’m trying to view the situation as having an opportunity to develop personal qualities I don’t have innately, but it is so difficult with the quarrelsomeness, the unwillingness to be proactive, the blame as if I’m the source of all his problems and the anger. He resists suggestions I have for making things better for himself and is overall negative and whines a lot – conditions I have never had much patience for. I recognize that he’s not going to change, so I have to.

Clearly talking to him about it is not the solution, which is sad as he’s always been my best friend. Do I talk to a mental health professional or what?

ddebita · ‎03-14-2017

I'm a 59 year old caregiver by profession, but only for about 2 years now. I am learning first hand what aging does to a person, both physically and mentally. I'm only with my client 3 days of the week, but it is 24/7 consecutively and it is very stessful, to say the least. I commend those of you who care for parents and spouses everyday, all day. You may not be aware that insurance may cover some outside caregiver assistance if it is deemed necessary by their doctor. And if not, as was suggested by some of the other ecommenter's, you could find someone to provide respite care so you can take a break for a few hours a day or week. There are websites that can help you find someone to do just that. Care.com is one and sittercity.com, another. I hope that you find a solution that works for you.

DrBarryJJacobs · ‎03-12-2017

I think you have gotten good advice thus far. Go for therapy or use a geriatric care manager. Set limits with your husband. Feel empowered to care for yourself.

But there's an issue that is alluded to in your questions and the replies that needs greater clarification. Surely, the more you overfunction for him, the more he'll underfunction for himself and place greater demands on you. We can think of this as a social or relational aspect of what is going on. But there's also basic biology at work here. Your husband has very significant cardiovascular disease. In addition to the TIA and heart attacks, I imagine he has had years of silent strokes and microinfarcts that compromise his cognitive functioining, including undermining his capacities to empathize with you and to take initiative for himself. As a consequence, he is probably not capable of responding to you with appreciation or by being less needy. If that is the case, then you have to set limits on what you do for him without seeking his approval; he will never have the insight to see its wisdom. You have to make good judgements for the two of you and that includes better pacing yourself so that you don't utterly burn out. Ignore his barbs; do what's right for the two of you.

Because he can't say this to you himself, it is all the more important that we community members say it to you: He is lucky to have you in his corner. You are doing a very good job. Be good to yourself.--Barry Jacobs, co-author of AARP Meditations for Caregivers

grandmabuz · ‎03-13-2017

This is very similar to my situation. My husband is 80, is blind in one eye and has kidney and heart disease. He won't do anything for himself. I dress him, cook for him, get him coffee, water whatever he wants. He has no interests anymore other than his dog and NASCAR. He sits in his chair, pets the dog, watches TV and gripes. He wants to be taken somewhere every day. I can't keep up with housework, let the dog in and out, and drive him around. He had his heart attack 2 1/2 years ago and his decline has been gradual but has increased in the last year. I'm burned out, angry and have had severe upper resperatory illness for some time. I'm 72 and he's 80. I'm sure stress plays a large part of my illness and anger. I attended an Alzheimers support group last fall. Most of the other attendees said I should put him in a home. He would HATE it and would fight it tooth and nail.

What can I do? Any coping suggestions?

JaneCares · ‎03-18-2017

@grandmabuz wrote:
This is very similar to my situation. My husband is 80, is blind in one eye and has kidney and heart disease. He won't do anything for himself. I dress him, cook for him, get him coffee, water whatever he wants. He has no interests anymore other than his dog and NASCAR. He sits in his chair, pets the dog, watches TV and gripes. He wants to be taken somewhere every day. I can't keep up with housework, let the dog in and out, and drive him around. He had his heart attack 2 1/2 years ago and his decline has been gradual but has increased in the last year. I'm burned out, angry and have had severe upper resperatory illness for some time. I'm 72 and he's 80. I'm sure stress plays a large part of my illness and anger. I attended an Alzheimers support group last fall. Most of the other attendees said I should put him in a home. He would HATE it and would fight it tooth and nail.

What can I do? Any coping suggestions?

Hi Grandmabuz,

There are a great many options that don't include putting him in a home.

Do you have money to pay for a helper / driver / companion?

Whether or not you have money to pay for such a person, are there any other family members who could be with him, take him out, watch NASCAR with him? Any buddies he used to work with/ bowl with (i know, how quaint but you never know), from church or temple, from the Army? I dunno, anybody?

Why do you have to do everything for him?

You could gently go on strike. You help him put on his clothes, and then you do what you need to do. Time for bed? He can sleep in his clothes. If he physically CANNOT change himself, how about putting him in those track suits: he can sleep in them and then wear them for a few days until they need washed.

Who made you chauffeur? Maid, cook, companion, bill payer....

Do what you would do for yourself and hire folks to be with him. Cheaper than assisted living.

Okay, i'm putting a lot out here. Tell me why you can't do these things?

You are a wife, not a slave.

Jane

l829636c · ‎03-12-2017

Hi,

I can relate to how you are feeling. My husband and I were also best friends before he had his stroke. He at times, didnt back me up when it came to my brotrhers or his kids which made things very complicated. But all of his good qualities totally out weighed that issue. But since his stroke he has also became very clingy and needy. Want me to stop and sit or go to bed at 7 or 8 pm and i am no where near able to go to bed before midnite with everything i have to do. He ended up having to go back to the nursing facility due to health issues so I sat with him one day and told him that when he comes back home that i want to sit with the home health nurse and we discuss what chores he will be responsible for and what i will be responsible for. His response was I dont think theres much i am able to do. My response was you can fold clothes, you can help with dinner and dishes, you can put clothes away, fill and empty the washer and dryer. heck you could even vacuum and if its nice outside, you might not be able to mow the grass but you can pull weeds. then he was like oh....hmmm i guess so. Since that discussion he has had a little change of heart and doesnt treat me near as bad as he was. we will see how long it lasts. Caregivers are special people and for my husband, its hard because i know its not the man i know. Its a direct result of the stroke but it doesnt make it hurt any less. Sometimes frustrates me more. I have spent more nights crying in the last 3-4 months than i have my whole life. Hang in there and the best advice.......take care of you and dont feel bad or guilty. I finally learned how to do that a little and it is very therapeutic. Take Care

JaneCares · ‎03-07-2017

Dear Di,

Thank goodness you got rid of that gun!

Wow.

I gave you kudos because of the honesty of your post. Thank you for sharing your rant with us.

I am a social worker, and i've been working with caregivers and patients of a wide variety of diagnoses for 30 years, including as a geriatric care manager, a cancer center social worker, and at hospice. Now i'm a 'behavioral therapist' in an extremely rural part of Oregon where there is not a single stoplight in the entire county. I have also been a caregiver to a very difficult woman, and then to her husband: these were my parents. I am now partner to a woman with MS who at the moment is in better shape than i am unless she gets sick and then all hell breaks loose. So i have some bona fides in the caregiving department.

Find a therapist.

Let me tell you why.

You are completely and totally wrapped around his little finger.

You need to share all of this, and then envision how you WANT to be his best friend, spouse, caregiver, with what capacity he has left. And then come up with a plan to bridge the gap between how it is now (one of the circles of hell from your recounting) to how you want it to be (tolerable, with respite and a life for yourself.)

What I'm hearing from your story is emotional abuse of you by him. Which isn't to say that he really means it. I don't know what he was like before he got sick. But regardless of what state your marriage enjoyed BEFORE, he is not there now, he is used to your 'fetch and carry' service, and your complete submission to his version of reality. My guess is that you will need a therapist/coach/cheerleader to start out with some new behaviors and stick to them. A kind of tough love. THIS new version of YOU will be the thing to learn from. THIS new kind of loving caregiving will be the thing you need to learn for the sake of both of you. He's essentially a spoiled child. And you've gone along with it because you're married, he was once a fabulous husband, and he's sick. But guess what. There is a much healthier way to be his caregiver. He can learn some self discipline. And if he can't, if his brain is too far gone, then even like a pet, he can be trained. Positive and negative reinforcement works all up and down the evolutionary scale. This is what you both need. And it's very hard to do this on your own. You are much too familiar with being his bellhop.

I hope i'm not sounding too harsh here. But you were honest so i'm being direct. As they say in AA, take what you like and leave the rest.

So engage with me. What do you think of this advice? Of my point of view? Abuse of Di the caregiver is not okay. If you're name isn't Di please sign off with some other way to address you.

I have one other idea. Hire a geriatric care manager. (Interestingly, slightly cheaper than paying out of pocket for a therapist.) Have her become your new BFF. She can meet Mr. Irascible, and establish rapport, and then work with you to set up a care plan that is within your budget, provides paid caregivers to him. (I know he'll refuse. Too bad. Most clients of mine would actually come to deeply appreciate their paid caregivers.) She can be the 'bad cop' instead of you. She can coordinate his medical stuff even take him to the doctor so you don't have to. If you are modest of means, she can meet you and set up a plan and then disappear into the mist.

tell me what you think of all this. And, a deep bow for your service to him, for your candor, and for the courage to reach out.

Jane

c863044v · ‎03-25-2017

Where do you find a geriatric helper.I have similar issues and could use some help.I live in Ohio.

JaneCares · ‎03-29-2017

Depends on what you mean by 'geriatric helper'. Do try the caregiving resources on aarp.org; they are very carefully designed and really helpful.

there are a bazillion home care agencies that serve your area, i bet, unless you live in a rural area (like i do), so google stuff like "home health aide" or "certified nursing assistant" or "elder care worker" and your town or county and see what you get.

is that what you meant?

all the best and please write some more.

Jane

AARPTeri · ‎03-29-2017

@c863044v There is a great resource tool in our caregiving area located at http://www.aarp.org/home-family/caregiving

AARPTeri

Jen · ‎03-28-2017

C863044v,

Do you mean help within your home?

We have a really great widget on our Caregiving Resource Center that may be able to help.

You will see it on the right of the page. It's called "Find Senior Care Near You." Use the arrow to drop down a menu of options. Put in your zipcode and a new window will pop up providing you with search results. Please let me know if this helped or did not. We always are looking for ways to better help our caregivers.

Thank you!

Jen

AARPJen
Caregiving Concierge

c386406k · ‎03-16-2017

Wow. What wonderful advice for us all. Thank you, Jane. Lots to digest, and much to give some hope. Thank you.
Carole

JaneCares · ‎03-07-2017

I just talked about your situation with a longtime friend and colleague, and she had some great ideas: I'm quoting here:
Am worried about her - I would wonder if her husband still has interests or passions? Thinking of her getting respite while a volunteer, daughters down the street type person, caregiver, family, friend could come in on a scheduled basis and focus on him and what he likes to do/discuss? Go out to Starbucks, watch the basketball game, talk politics - someone to be where he is at the level he can be there. She needs some infused beaks for her own mental health... And on these breaks hit that support group and/or therapist in addition to being with friends, yoga, massage - whatever her "thing" is...

EveRH · ‎03-07-2017

It might be helpful for you to find a caregivers support group, and especially one that's facilitated by or has the help of an eldercare social worker. Often a local/regional senior center will have a group like that, or even a larger house of worship might. It will give you a couple hour's break a week, be a safe place for you to vent your frustrations with people who can relate, give you the opportunity to hear what others have done in similar situations, and a link to a professional who can also be very helpful.

Although I've been a caregiver multiple times, I was lucky that they were cooperative 95% of the time. In fact, within the 2 years my elderly aunt lived with me, her change in diet allowed her to stop taking medication for high cholesterol!

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