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My wife has a fairly significant stroke about 14 months ago. and although I am doing everything possible for my wife and to keep our household up and running, it never seems to be enough.



As most of you know this involves long days and nights with an endless list of activities which was formerly at lease divided in 1/2.



I keep trying to do what she needs and wants but I am feeling like the end goal is maybe not reachable. I'm feeling a bit beaten and worn out. I am always told that I need to make time for myself, but that is easier said than done. I actually like caring for my wife and work hard to see that she has want she needs, wants and more but she dosen't really seem to understand all I am doing and keeps adding to the list.



I don't even mind that as long as she is not nasty about it, hence the problem. She actually seems as if she is constantly looking to find something I missed, have forgotten about or simply have not done yet. The result is her wanting to "talk" which results in her going on for as long as I can stand it about what I have not done, what needs to be done, the fact that everything is always done my way, etc..... This goes on until I simply cannot stand the degrading comments and badgering and loose my temper. Then I'm really the bad guy!



My solution is often to have a short but lively outburst then leave her alone and stop talking typically for the rest of the day or night.



What really worries me is that I get to the point where I simply don't want to do anything but go to sleep to escape.



Sorry for rambling a bit, but if anyone can give me a few pointers I am all ears.



Curt

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My husband does all the caregiving for me currently and I'd never criticize him at all. He surely isn't perfect and is a terrible housekeeper, but I'm so grateful to him for stepping up to the big task at hand w/o complaining. My point is this.....I didn't have a stroke and am not cognitively impaired in any way. Can you say the same about your wife? Is she aware that she's causing you such upset, meaning she's aggravating you purposely? That's the question here bc often with a stroke comes cognitive impairment and unusual behaviors that are difficult to deal with. After my mother's stroke, her dementia got much worse as did her argumentativeness and complaining about every little thing.

In any event, I'd lay it all out on the table for your wife. This is what I'll do, this is how I'll do it, take it or leave it. I'm not God or Superman but a mortal man doing my level best for a woman who's cutting me down 24/7. And I'm DONE. You either say Thank You in a civilized fashion and quit the litany of chronic complaining or I'll start looking for a nice AL for you immediately. Or in home caregivers to relieve me of this indentured servitude I've taken on. Which you should do anyway. Get out of the chaos for a few hours a day every day. Make it happen. No excuses. Or you'll wind up more depressed than you already sound (wanting to sleep a lot). Speak to your PCP about that, my friend. You have a lot of stress on your shoulders.

Dementia or not, lay down your boundaries firmly and I'll betcha $100 she'll hear what you're saying. You deserve to be treated with respect for all you're doing. Accept nothing less.
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curttaylor May 2023
Thanks for your reply. I agree with everything you said but I guess your response made me look deeper. And there is more. She feels she is absolutely right and after she winds me up so tight and I finally lash back at her she tells me that is like it has always been. "It's always Curt's way" .... She brings up enough examples to make me think I haven't been a very good person to her. Not horrible stuff, but things that she remembers from 20-30+ years ago where I didn't act as well as I should have and she always let me get away with. The funny part is that I am the only guy I know that has not been divorced at least once. Maybe I should have been. I am greatfull that she allowed me a great life and feel sooo bad that she feels she "tolerated" me for all those years.

Sorry for rambling but thanks again for your response to my original.
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A few things…what I know now that I didn’t know then is that following a stroke there is often depression, may be it’s not obvious, but it’s surprisingly common and needs treatment. Look into that for your wife it’s it’s not already being addressed, and if it is, check in with her doctor to see if perhaps meds need adjusting. Clearly, her agitation needs calming somehow. Another thing, just read that about 60% of stroke patients experience some mental decline in the months to years following the stroke. Consider if that’s a possibility and driving some of the behaviors. And a biggie, decide how many of these tasks simply don’t matter! Let her know there are tasks that may not get done or done nearly as often, that it’s okay, and you’re not up for listening to any further comment about it. That’s not rude, it’s self preservation. There is more to life than many of the tasks we all once thought so vital every day. Yes, take those breaks, without apology or explanation. Look into taking your wife to a local senior center for whatever suitable programs they offer, she may not want to try it, but may surprise herself and actually enjoy something different. You need time doing separate activities or at least in different spaces. I wish you both peace
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MargaretMcKen May 2023
Yes of course there is often (always?) depression after a stroke. My mother wasn't a barrel of laughs after hers, aged 48. You may be part paralysed, there may be things you can't do, you and your famaily are worried whether it is going to happen again, etc etc. It's no justification for treating others badly, you need to do the best you can.
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Stroke is a brain injury. It can bring problems to many areas, mobility & speech are the ones easy to see & hear. But 'hidden' problems are just as hard, behaviour problems or mood issues even harder in my opinion.

Have there been big changes, big losses in your wife's abilities? It's such a big adjustment - for you both.

I'm wondering about her anger & anxiety?

I'm picturing her previously going about her day, attending to her daily houshold tasks, her way. Completing them with her own standards & methods.

It seems now she must rely on you to do ALL the tasks?

But she didn't choose this - so has not 'let go'. Is holding firm to her pre-stroke life.

I wonder if she is just so angry about it all? Angry about the stroke. Angry she has lost independance. Angry she has lost her role, her 'usefulness'. It gets directed at you.

Then anxiety. Tasks won't be done HER way, won't be done 'right'.

The endless list to do.
Her way. *Micro Managing* they call it. Looks like a coping mechanism for her, attempting to maintain control, to reduce her anxiety. Many anxious people are this way.

What to do about it before this behaviour sends you mad?

1. Talk to the Doctor.
There are medications to help with anxiety.

2. Find tasks she can do independantly. (Even if you set them up). Calmly reinforce who does what. These are YOUR tasks Dear & these are MINE. You do your tasks your way. No discussion.

3. Consider coucelling? If this would help your wife with anger, anxiety. To help with adjustment. Or for yourself for more support?

4. Respite. Definitely look into this. Either regular in-home sitters (if she cannot be left alone) while you go out. Or week blocks where you fo visit friends.

I had relatives that *micro manage* like this, endless lists handed to all in view. Anxious +++ It is exhausting.

I hope others have more tips for you.
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curttaylor May 2023
Thank you for your insight. I did start seeing someone to help me. We also started seeing a marriage counselor.

I really don't want to take meds but may resort to that in time.

Thank you!
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"...I really don't want to take meds but may resort to that in time..." I believe that Beatty was suggesting talking to her doctor about meds *for her* anxiety.

I agree that your wife may be experiencing the known mood disorders that often happen after a stroke. I think she needs to see a counselor or join a support group for survivors of stroke.

I can understand why you feel nitpicked by her. She does need to accept that this is her problem to fix - you are doing everything possible to aid in her recovery - and her nitpicking is not good for either of you.

Anything that she can do for herself, or to help you with chores, she should start doing. It's therapeutic. It will build her self-confidence.
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Curt,

You are facing the impossible trying to keep the house running and take care of her. My best advice is to hire some caregiving help as much as you can manage. Most caregivers do light housework also. You can always decrease the hours later as needed.

Her primary care doctor may have a social worker on staff that can connect you to some reliable agencies.

She may not improve or if she does it may take a very long time. Has she had any therapies in your home?

Take care of yourself because this is incredibly hard. Is there any family that could offer help until you set up the arrangements?

Thank you and bless you for being such a loving husband.
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May I ask a few questions?

Is her cognition impacted by the stoke? Or was she more impacted physically? Because the reality is that a lot depends on the answer to that. And also, what was she like BEFORE the stroke?

If her cognition was severely impacted - she may not even really realize or understand what she is doing, it may just be result of the stroke and what it did to her mind. If that is the case it might be helpful for you to find a support group for spouses caring for loved ones with memory loss or cognitive or capacity illnesses like ALZ or dementia or post-stroke memory loss or something similar - to find support in others who are going through the same or similar situations. It might help to talk to others who understand, and give you a chance to decompress. You are living in a volatile situation - according to your profile you are still working in law enforcement? And you are caregiving in a situation that could be considered provocative - so you are probably not feeling like home is a "safe space" to relax and rest and take a break from your job. From the frying pan into the fire so to speak.

If her cognition was not impacted - consider this. If you are providing her care - there is obviously a reason. She is dependent on you. Where 14 months ago - you were sharing the load. I would imagine - that maybe she expresses dealing with all of this in anger. And maybe she is baiting or provoking you on purpose. At least to some extent. There is a whole school of thought that sometimes when people have something terrible happen to them that they just want to feel strong emotions again, they just want to feel *something* again - and sometimes they go about it in all of the wrong ways. And unfortunately when people have something really terrible happen to them - they usually take that anger and frustration out on the people closest to them, because they know they can trust them to be there and still love them. And unfortunately they don't consider the amount of pressure that puts on the other person.

If her mental capacity is not impacted and you think she is well aware of what is happening - has she seen a therapist or talked to anyone - besides you - about what happened? People often don't really consider the mental load of something like this - and not just for her. For you as well. This changed your entire lives. Your futures. That isn't something that you just shrug your shoulders and say "Meh, whatever". People tend to bottle up emotions and they come out in other ways that aren't so controlled or pretty.

So in my infinite wisdom ( that's a total joke by the way) I encourage you, as others have, to find some time for yourself. And to find individual therapy for both of you. If things were good before the stroke, is there a favorite place the two of you used to spend time that you could take her to for a visit (if physically feasible and it wouldn't make things worse to bring up memories). Has she seen her friends since? Have you seen friends that you used to spend time with together? Or did everything just stop when it happened?

Have you looked into some respite or home health care to give yourself a break? Even just a housekeeper to take the load off in that aspect? Cut yourself some slack. You can't and shouldn't have to do everything.

You can't continue to take care of her if you don't take care of yourself.
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curttaylor May 2023
Wow,

Thanks for your response. I agree with everything you said. To answer your question, she has been tested and has been confirmed to be cognatively at 100%.

As I go down this road I realize that much of her behavior is the result of long term resentment she has had for me. In a way I feel very badly and as if I ruined her life. She was always soooo good to me and what she tells me now is that she just tolerated and tried to look the other way when I pressed issues and got my own way etc..... I get the idea that she was never very happy and dove into her work to be able to get through it. I am the only guy I know that hasn't been divorced at least once and am greatfull for that but it seems as if it was at her expense.

Cheers,
Curt
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Hi, OP. Your wife has no experience of anyone except you caring for her since the stroke.

One practical option would be for you to organise a couple of week’s respite care for her. The respite is for you (and I’m sure you could do with it), but the other aspect is to have your wife experience what sort of care would be ‘normal’ for someone with her issues. You can both see how she behaves to other carers, and the results. It might do you both good!

My older sister had a VERY (not fairly) serious stroke in her late 20s. She refused to be put into a 'sheltered workshop', recovered to care for her two young sons, organise running the house, finish qualifying as an accountant, set up her own auditing business, do the financial management for her husband’s engineering business, make a lot of money for them, and be polite and friendly – in spite of aphasia and being totally paralysed on one side. Now aged 79. My sympathy for your wife’s behavior is a bit limited. You don’t want another 20 years like this!

Get yourself a holiday or a work placement, and let her get a bit more experience of coping for herself and her temper.
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NeedHelpWithMom May 2023
Great suggestion! Wise practical advice here.
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I was going to make the same suggestion as Margaret. She wisely advised you to take a break.

Hopefully, a break will allow you to see things from a fresh perspective.

Wishing you peace as you continue on with your caregiving journey.
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curttaylor May 2023
I am working on a respite plan.

Thank you for your response!

Cheers!
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Maybe you should tell her calmly and nicely that when you ask a person to do something for you, you allow them to do it their way. If you are always criticizing, they will stop doing for you.

Tell her too, that you are entitled to have time to yourself. And too, make her do what she can do for herself. Otherwise ur disabling her. It may take her longer but she needs to do for herself.
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Curt,

I saw your response to a poster saying that your wife reminds you of your past mistakes from 20 plus years ago.

Wow, Ouch! That has to hurt. Has she always done this?

I don’t understand why people bring up ancient incidents instead of facing the issue at hand. It’s a manipulative tactic. They are avoiding talking about the current issue.

I’m sorry that you are going through this with your wife. You’re in a tough spot.
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