MIL, who is almost 80, was recently diagnosed with moderate dementia. She has had a lot of health problems over the years, such as kidney disease (near failure), diabetes, afib, stents, strokes, high blood pressure, and was recently diagnosed with COPD, a heart attack, and interstitial lung disease. She does not qualify for Medicaid assistance for a home due to benefits she receives from her former job. We’d have to sell her house which she refuses to do, and frankly, we don’t want to sell. We moved her in with us to try and help a while back, but did not realize how bad things would get. She also cries frequently, saying that she doesn’t want to go to a nursing home. We can’t make her, but the level of care that she requires is far too much for us. We’d have to keep an eye on her 24/7. We’ve had to take all of her care and it is becoming difficult to manage. She’s become very mean over the years and is in a great deal of pain due to the scarring on her lungs. She is also short of breath frequently due to COPD. Her diabetes is difficult to control and she is resisting eating at times, which makes it difficult to give her insulin. She’s also gotten to the point where we have to directly give her her meds and make food or else she won’t take either. Hubby and I are both young, have careers and children of our own to care for. We want to help her, and give her good care, and we realize we’re about all she has. But it’s wreaking havoc on our childrens’ lives and our health now. It’s difficult to help someone who is hateful.
She walks around in a diaper all day being mean to us / the children. She’s also become very inappropriate. I know a lot if it is the dementia, but it’s becoming very difficult to be around. We can’t stay up 24/7 with her, we aren’t medical professionals, and I am terrified something is going to happen to her in our care, and we won’t be able to get medical assistance in time. How do we proceed? Feeling lost and confused.
So consider another question- how long will you continue to accept her refusal before a crisis occurs?
She has “moderate dementia”, but what SPECIFIC BEHAVIORS does that embrace? Does it mean that you should honor her meanness and inappropriateness and lack of self care because SHE REFUSES your efforts to get her the multiple types of help she needs?
Is it heart wrenching to see and hear an aging adult with dementia crying because of an unrealistic perception of their own ability to provide for herself? Of course, but within YOUR ROLE as caregivers, you have already realized that you CANNOT CONTINUE what you’ve been doing.
You proceed by developing your own perspective to embrace MAKING HARD CHOICES. And that’s all you have left to choose from.
Did I want to sell TWO HOMES on a family homestead held in one family for 125 years? NO WAY ON EARTH. Did I come to realize that I had NO OTHER ALTERNATIVE? YES, because I HAD to.
One of the VERY WORST things about caring for a sick, confused adult is realizing that there may be NO GOOD CHOICES, so your only option is to choose the least negative among your alternatives and moving forward with that.
For her safety and complexities of care, and the welfare of you and your husband and your children, she NEEDS to receive care outside of your home. If that requires the sale of the house, so be it.
Tough stuff, for all of you. But once you stop using her refusals as the steering wheel, and start focusing on her needs for safety and a structured healthy environment ALONG WITH the needs of your growing family, things may begin to fall into place.
Hoping you will arrive at decisions for her that will bring you a measure of peace.
Second, understand that your children come first. Your duty to them is your primary responsibility in life right now if they are minors.
What mom wants, if she has dementia, may not be what is safe, or what she needs.
This is not you being selfish, thus is you trying to get the best care that your mother can afford.
Can she afford at home care at a level that is both medically safe and financially sustainable for her?
If she can't then she needs a facility. Get her to the ER and tell them this is a "social admit" that no one at home can manage her care.
They will try to guilt you into taking her home, but stand firm.
When curative treatments have done all they can, comfort care can be the kindest option.
Just do it. Find a home & contact Hospice Services.
She may not want to go to a nursing home. (Pictures ancient awful madhouse of yesteryear). But she needs one.
Sit down with her & ask what she actually wants. People stay *stay home!* But that means different things to different people. It may be to stay SAFE, to feel LOVED, to not be in PAIN, not to be forgotten.
I would look for a home close to where you live. This will be much easier & allow more frequent visiting.
When a person's dementia is at the point where they're walking around in a diaper, sitting down and asking them what they want is no longer an option.
Everyone wants to stay home. No elder ever wanted to go into a "home". They decision is no longer up to the OP's MIL. She has to be placed because they can no longer meet her care needs in the home.
She needs to be placed now. If she has dementia you cannot sit her down and discuss it. Make arrangements for her and let whatever facility she goes to know that she will be a hostile transfer. They will help get her there.
If she winds up in the hospital, especially Rehab, tell them you can no longer care for her and have her evaluated for 24/7 care. If needed, have her transferred to LTC. Where I live Rehab and LTC are attached so just a matter of transferring. Use what ever money she has to pay for her care and start the Medicaid application. Has to be done 90days before the money runs out. She maybe able to be placed with Medicaid pending.
Almost no one WANTS to move out of their home and move into either another home or if needed Long Term Care or Skilled Nursing facility.
You must realize that mom will never go back to her home.
So I have to ask what is to become of it? If you intend on moving into it then sell your house now. "Pay" mom what her house is worth and the money can be use to hire caregivers. (Fair Market Value must be paid to mom)
With caregivers you will find that caring for her will be a bit easier.
If you do not have the legal authority to do this and if she has been declared incompetent then you will have to obtain Guardianship.
And because this is me answering..
have you contacted Hospice?
With Hospice you will have a Nurse that will come 1 time a week, a CNA that will come at least 2 times a week to shower/bathe her and order supplies. you will get supplies, medication and equipment needed to make caring for her easier and safer.
I do have to add though if mom is not safe and or if you or any family member are not safe caring for her at home you really have no option but to look for a Memory Care or Skilled Nursing facility that would be appropriate for the level of care that she needs.
The family doesn’t appear to have POA. If they don’t have access to her accounts either and she won’t give it to them, the guaranteed way to get her out is a social admit to ER or an eviction followed by telling the state they can have conservatorship, or filing for it themselves while still trying to pry from mil any access to these assets.
That's exactly what will happen. A family-member will have to be appointed conservator by the court.
An ER dump or 'Social Admit' is often the only way families can get anything done.
My friend and neighbor had to do this. His step-father died suddenly. He had been the sole caregiver to his mother with dementia for years. She came to his house and he was caring for her the best he could. He had an accident and had to be hospitalized. Everyone pitched in trying to cover care for her. She was completely out of it with dementia and someone had to watch her 24 hours a day. There was no way he could care for his mother when he got out of the hospital. There was no POA or conservatorship in place. His step-father who was a lot younger than his mother had all of this.
My friend had to do the ER for his mother. While she was there he petitioned for conservatorship from the court. He got it, sold her house, paid the nursing home and she's on Medicaid still living in the nursing home the hospital placed her in.
How old are your children??
People with dementia often seem mean but their brain is broken and they have no filter and say and do inappropriate things. Try not to take it personally or see it just as mean because, while annoying, it is complicated and impossible for her to control.
Why don't you want to sell her house? It's probably going to need to be sold sooner or later. It may not be what anyone "wants" but necessity may deem it so.
Hire some aides ASAP to work with her. Manage some of her health issues, take her for a walk or a drive, help her clean up herself and her room etc. Use her money to pay for this. She may not like it but it's necessary.
I agree that if/when she ends up in the hospital, this is the perfect time to say that you can not care for her at home and they will help find an appropriate placement for her. Push it from day 1 and do not give in. She needs so much care - you'd have to have a lot of aides to take the burden off of you.