Hello,
I'm new to the forum, don't know how I found it, but glad I did.
I would like to vent.
I am at my wit's end, as I see some other folks have been.
I have an elderly spouse who was supposed to have passed six years ago but continues to live on.
He refuses long term care.
I am trying to keep home health and hospice services for him through agencies, but I have days of no call/no show, the caregivers stealing medications, smoke dope while at our home, or drive my husband while they are stoned, they drink my husband's beer, they leave him dirty while they sleep all day, etc. I complain to the agency, and they have labeled me as a complainer, not wanting to believe me, or fix the issues. I don't have proof of everything as I find out after the fact, when I get home.
I live in a rural area and finding folks who will work is difficult.
I work full time, need to.
All these things are now affecting my health since I go home after working all day to clean my husband and the home up.
I try to take little bits of time for myself, but it's tough, not having services.
I appreciate your letting me vent here.
You can leave him.
You will not be reported.
I agree with AlvaDeer you can place a call to APS.
Please see a lawyer about your options and how to escape this. Yes I said escape.
Refused to go into (shorterm) respite care, refused aides to assist her at home, would only accept help from my Father.
He felt those choices were hers to make. He believed he must respect her decisions
Time went on. He became fatigued. His Doctor (plus all family & friends) told, suggested, pleaded with him to lighten his load.
But no matter HOW many times he decided HE needed a break, he seemed trapped. It appeared HER decision to have ONLY HIM overruled.
Then he needed surgery. She STILL refused other carers. Said wanted to accompany him to the surgery & stay home afterwards. She just wanted to be with him, sweet. Whether she had lack of LOGIC or DENIAL.. ??? But this was delaying surgery so the Doctor was consulted.
The Dr was able to start the process. To clear out some of the fog from my Father's thinking so he could see the big picture clearer.
The Doctor said:
* Mother had the right to say no.
Had the right to say no to respite accomodation. Had the right to say no to aides coming to the home.
* But Mother had NO RIGHT to enforce her husband be her hands-on support person.
* Father also had the right to say no.
One person's right to decide cannot remove rights of freedom to another.
Is that what is happening here?
Something to discuss & think about?
You just DID answer us all, and that's the only way you can do it other than should you wish to go to private messaging. So glad you are participating and that we haven't turned you off the forum.
Just one thing, beat APS to the punch by calling them yourself. Let them know hubby is perfectly competent in his own choices, but that you personally cannot live with him any more without seriously jeopardizing your own life. I need to let you and that SILLY NURSE know that NO ONE in the United States of America is a slave and prisoner to a competent person. And it's ridiculous for her to tell you such a thing. You would see an attorney, have him/her help you with division of finances of the marriage, and divorce or get a legal separation. Then what your COMPETENT hubby does is ENTIRELY UP TO HIM. As I said, this is the USA. We don't have slaves anymore.
Now, should you choose to stay for whatever reason (and there are many reasons TO STAY for certain, including the cost of living which is horrific for two living separately as compared to living together) then you need a way to arrange the house and all things so that you have privacy right. Let hubby know that you will be leaving for Book Club, Knitter's Club, WHATEVER. And be sure he has emergency numbers when you are gone. And go make friends. Live your life.
You have two choices here. Stay or leave. And in EITHER, if you set limits and stand up for yourself he won't think he can be abusive to your good nature.
Best of luck. Stick around. Take part in the Forum and give advice. A way to escape his constant nattering at you.
I do so appreciate all the comments provided! THANK YOU ALL!!!
I worked in long term care for 14 years, administration and admissions. In my area long term care will not take someone who refuses to go, it causes problems for the facility. My husband is cognizant.
I have thought about leaving him, and letting someone else figure it out, but have fear of APS, as home health RN has stated she will turn me in.
I do have cameras, thanks to my cleaning person. Those are helping.
My husband will not eat meals on wheels; however, I have the easiest things for the caregivers to provide to him that he will eat - ready to heat meals, cereal, etc. They just don't feed him even though it is on the task list - leave it for me after working all day. I'm frustrated with that.
I'm working to pay our bills. We are using all of his money, retirement investments, to pay for his care.
Again, I'm grateful for all the comments!
With respect to the question of hospice six years ago - he was in hospital for congestive heart failure; they sent him home, said he should be on hospice; he said no; has said no for years, so had home health which I have already discussed is one of my largest stressors; and there aren't many options in my area, have been to other agencies, so as another person in their post said, don't want to rock the boat too much, or there will be no care. I finally got him to agree to hospice two months ago for more services and less of my having to manage doctor visits, meds, ER visits, etc. He's not even close to dying.
If your spouse is not cognizant discuss making the respite a permanent placement. The Social Worker and facility Social Worker can work with you to try to make this happen.
Respite care is covered by Medicare, Medicaid and most other insurance as a benefit of Hospice.
If you know these things are going on with the caregivers place cameras in the house. You can place them in any location where privacy is not expected. (so no in the bathroom the caregiver would use and if they are there at night none in any bedroom they would have) Check with your State regulations if Audio is permitted, in some states you need 2 party consent to record audio.
I would contact a local hospital case worker and ask for a list of local services and resources. From what I've seen they maintain the most up to date and comprehensive lists.
Wish you had made a bit more clear to us your husband's current status. You tell us:
"I have an elderly spouse who was supposed to have passed six years ago but continues to live on.
He refuses long term care."
Could I ask WHAT your hubby was told he would die of (he has hospice so some doc or another thought he had fewer than six months and is now in sixth year.
And as to his refusing long term care. Could I ask if there is dementia here? Because if not, it isn't really his to refuse. It is up to you whether he is placed in care or not. And if he is competent and choose not to, then perhaps you can just leave him to his beer-drinking companions and go on your own?
Any updates on this diagnosis of his that was supposedly killing him, but apparently is not? Is his condition worsening? The same?
Who is supplying you with all the information you get dolloped onto your plate when you return home from a hard day's work? Are you working to pay caregivers?
Anyway, heart out to you. Think you landed in the right place whether to vent or to get advice. Meanwhile I am wishing you the best.
Refusing something is fine for an adult except when that refusal negatively affects the lives of others, like it is affecting yours.
One of the many gems I've learned from this group is 'the person needing the care doesn't get to drive the caregiving bus'. That means the caregiving situation needs to work as much for YOU as for your husband.
Do you have a Plan B for how your husband would be cared for if you were to be incapacitated? Fact - many caregivers die before the person they're caring for.
From the sound of it, you need to figure out your Plan B NOW and implement it very soon. Burn out IS incapacitating.
It sounds to me you have TWO fulltime jobs. Work hours outside the home & then fulltime caregiver when at home.
Managing a fleet of aides is another layer of work load, maybe a third job. Aides, appointments, meds etc.
Vent. This is useful. It can help leak some anger out.
I have come to see anger as a messenger.. sending signals to our body & brain that it is time for CHANGE.
You mentioned your DH won't change. But YOU can.