My wife only leaves the house in a wheelchair, and is sometimes almost bed-bound for weeks at a time. For both chronic and acute problems she will often avoid consulting a doctor for as long as possible, and ignore or sabotage the advice or treatment. She's mentally alert (has many online friends, coordinates online nonprofit meetings, travels to Sacramento or even DC to lobby a couple of times/year, plays World of Warcraft, etc.). But her relationship to health care is similar to many of the Alzheimer’s stories here. Sometimes the self-sabotage affects mainly herself and is just hard to watch, like unwillingness to do straightforward things to improve her mobility for irrational reasons (1). Other times it makes extra work for me, because she makes a small problem into a big one, or didn't take obvious preventive measures (2).
I'm looking for both problem-solving suggestions (for the things I can perhaps change) and coping strategies (for those I can't).
Examples since "irrational" and "obvious" are judgements. These are the kinds of things I just don't know how to deal with.
1. Irrational arguments: Doc recommended she resume water-based exercise in the nearby heated therapy pool; she has mentioned many times over the years that was the most helpful PT she's ever done — the pool closed and she never re-started when pool re-opened. Now, it's "too inconvenient to change clothes" and "the chlorine destroys every bathing suit in 2 months" (she could do all the clothes changing at home and could easily afford a new bathing suit every day).
2. Sabotage, obvious measures: When sick with severe GI symptoms, refused to call a doc, take Imodium, or wear a diaper or use a pad in bed. Ended up soiling the bed and the bedroom and entire hallway carpet. She can't bend over to clean, so that was me and later a carpet cleaning service. She finally agreed to call a doc — at the beginning of a 4-day weekend so it was 5 days until online appt. She said doc told her to take Imodium. Only the day after taking it did she mention that the doc also ordered stool tests. I got the kit; sample had to be at lab within one hour of collection. But she couldn't produce a sample for over a week because of the Imodium. By then she'd been sick for a month and was finally starting to get better. The tests found nothing which she took as vindication that it's useless to see doctors.
That your wife is conducting herself in SUCH an unhinged way with refusing to address diarrhea, forcing YOU to do what you had to do is a sign of a very sick woman. Whether she has a mental illness or a personality disorder or just contempt for you, I have no idea. But if my husband did this nonsense to me, I'd give him the following choice: clean up your act ENTIRELY or we're getting divorced. That she's functional when she WANTS to be and totally dysfunctional the rest of the time is 100% unacceptable. I suggest you tell her that and take your life back.
Good luck.
"She's mentally alert (has many online friends, coordinates online nonprofit meetings, travels to Sacramento or even DC to lobby a couple of times/year, plays World of Warcraft, etc.). But her relationship to health care is similar to many of the Alzheimers stories here."
To be honest, people with Dementia of ANY KIND cannot travel to DC to lobby a couple times of year, nor can they play World of Warcraft.
Something here is skewed. Your wife needs a good solid diagnosis, because I fear you are looking at mental illness here if you have someone regularly soiling herself, staying in bed, and etc. Something either mental or physically is being missed.
Were you to have a complicated legal question I would tell you see an attorney.
Were you to have a complicated financial problem I would tell you to see a CPA.
You have a very complicated medical situation here that requires expert help, not the guessing of a world full of members of a Forum.
I wish you great good luck.
It is time for a THOROUGH and a GOOD neuro-psyc exam, and also a GI consult.
Sorry you are going through this.
As to changing people and what they wish to do or wish NOT to do? No going to happen.
Hope you'll update us, and again, so very sorry.
She's 69 and what you describe is not someone with dementia. She's "too young" for age-related cognitive decline but she could have ALZ -- however what you describe does not sound like any of its symptoms, at all.
She obviously has no empathy for your situation. You have a high tolerance for whatever you wish to call this type of abuse. You can only be abused if you allow her to keep doing it to you.
Without a clear diagnosis of a mental or cognitie disorder -- and her unwillingness to really work on one -- you don't have a lot of options if you don't want the rest of your life to be ruined. I would take yourself to see a therapist so that you get an objective perspective on your marriage. The counselor will help you find and defend healthy boundaries so that you don't continue to subject yourself to abuse.
After that, do what the counselor suggests. Most likely it may be to invite your wife join into the therapy at some point. If she refuses, this is where you might have to give her an ultimatum. She comes to therapy and does the "homework" or exercises or... the marriage may end. But never make a threat you aren't willing and able to carry out. Your wife is used to being your puppeteer so she will be very enraged at any boundaries you put up.
You can't want your wife's health recovery more than she wants it herself. The next time she has a sickness like what you described above and irrationally refuses to do anything to help herself, please call 911 and tell them she's delusional as she's refusing all solutions. Ask for her to be tested for a UTI. Once she's in the ER it will buy you some time to figure things out. At the very least it may open her eyes that you're not going to sit back and take her sh1t (literally) anymore.
2. Doctors are the hardest because she is her own right mind. Maybe reminding her that its been x number (showing a handwritten calendar of documentation) of days thats why the test didn't show anything. For my daddy - he had ALZ but the way I got this 6'2" man in a car, I told him that to get his prescriptions refilled was to see the doctor. Maybe you can say that - you need to update your prescriptions and the only way to do that is go to the doctor.
I know it is hard but continually insisting on exercise or other "musts" feeds the need for attention. It is especially hard knowing you will have to deal with the consequences. Start thinking hard about boundaries and consequences. Best of luck to you.
You don't mention ALZ in ur profile but you mention it in your post. Does ur wife suffer from a Dementia/ALZ, if so thats ur problem and not much you can do because there is no reasoning with a person who suffers from Dementia.
Otherwise I am with Lea here. If you know she is capable of doing then don't do for her. If possible, stop sleeping with her. First time my DH soiled a bed after I said wear depends, I would not be sleeping with him. And, he would be stripping the bed himself and washing the sheets.
If there is no Dementia, treat your wife exactly how she is acting, like a child. Do not disable her. If u weren't there she would have to do for herself. If you really feel this is all an act, call her bluff and tell her divorce is just around the corner. "In sickness and in health" does not mean when someone is play acting.
Her mobility issues are not play-acting but overall her physical and mental abilities shift to avoid things she doesn't want to do — she can play World of Warcraft but working a coffee machine is "too complicated".
This feels similar to the problem others here have mentioned of a family member who hoards yet does not have ALZ or dementia. It's a mental issue and so it's sort of back in the realm of basic therapy. In the absence of dementia, one can't (and shouldn't) just take over health-care decisions. She seriously needs therapy but is unwilling to do it. When I've insisted on couples therapy in the past she went but didn't engage.
She has a superpower and it's inertia. She won't expend effort to contribute to the household but she won't expend effort to improve her own situation either, just keep doing the minimum to deal with the same problems day after day.
I've gotten much better about household boundaries. Any other tips about setting boundaries around health care issues greatly appreciated.
1) Stop doing things for her if she could do them herself. Her health issues sound fairly normal, but she’s lazy. She is neither disabled nor elderly. I'm 76 with more serious health issues, and I don't play those games.
2) If she won’t see a doctor, tell her that you will call APS to investigate her condition and the steps you need to take to avoid being accused of neglect. And do it, if necessary. APS may not help, but it could give her a bit of a shock!?!
3) Congratulate her on giving up coffee. It’s expensive and not all that good for her. You can work the machine for yourself because you can understand it.
4) Ask if she wants to move into Assisted Living. She may be about the youngest person there, but she can get more tips on how to be 'disabled and elderly'.
5) Arrange respite care for her for a month. This is respite for you, not for her, which is the genuine purpose of respite care. It will help to de-stress you, and give her a taste of having ‘institutional care’ rather than a personal servant.