Mom had to move in with us due to serious safety issues and a trip to hospital. She was living alone but numerous things including getting lost, not taking meds, and drinking enough have cause uncontrollable diabetes now requiring insulin and CKD stage 4. Could not keep house or pay bills, which we addressed a year ago. She is constantly wanting to know where her car is, how she got there, and she wants to go home. She is seriously depressed. Limited funds but too much to qualify for Medicaid. Not sure how to deal with it and her poor kidney function means she is ineligible for seroquel or Rexaulti. No one seems to have any good suggestions for help. I’m scared to leave her alone for fear she will just take off. I just want her to accept diagnosis and help but she continues to say she is fine, not crazy, and will not have anyone telling her what to do. She obviously feels better since she is eating better and taking meds. What can we do to help her?
Your MIL has dementia.
It is critical for you as the caregiver to learn all you can, and first lesson would be "denial".
So strong is denial for those with dementia, you can almost diagnose whether it's a factor by saying the word and asking an elder to undergo testing.
Few with dementia ask for testing and most deny it. And one cannot argue or convince anyone with dementia of any THING.
So it off you go to every website and video (recommend Teepa Snow) you can find.
Now we come to some facts and recommends.
#1: THE KIDNEYS
You mention CKD stage four. So major decisions coming and one of them involves dialysis. Because onerous and diabolic as it's effects on the lifestyle, it will PROLONG life by more than a decade, and not a very pleasant decade for anyone involved.
What are MIL plans for the question of kidney failure? As a retired RN I would never ever take dialysis, even temporarily at age 81. When the kidney's go I will be out the door shortly behind them. These discussions need now to be had with MIL and hubby. Because basically, on the face of it, it is going to decide whether you have a few more years caring for MIL or whether you have decades, and not very happy ones. Leaving you yourselves in old age when finally you lose her.
#2 THE DEPRESSION
Is this depression or is this a willingness, indeed a longing to be gone from life at this point? Important to know. Depression, you can try some meds. Longing to be over it, which is normal for many of our brightest elders, is something that should be spoken of and planned for--again, in the advance directive and as soon as possible while MIL can make some of these decisions.
#3 24/7 CARE
First of all, do you have a care contract with MIL? So few think to do this and the result is a disaster. You should create one with MIL and attorney and get the POA papers and all else done. Make certain you don't charge "rental" as this is taxable; use words such as "shared living costs". This money then comes out of MIL monthly and doesn't look like gifting, which, if it happens would make it impossible to go into care. It can provide respite for you if you don't need help with living costs.
You see you cannot now, and certainly cannot in the near future let MIL alone. This means exploration of day care, of having help come in so you can get a break. You as POA will have to keep careful records of all expenditures.
As now a caregiver --two caregivers with your hubby--you move from status of son and daughter soon to status of caregiver. Caregivers are the bosses, the limit setters, the advisors in no uncertain terms and they are not LOVED like a son and daughter.
#4 LONG TERM
When this arrangement isn't working for ONE of you it is not working, period. It is time then for care. Yes, all of mom's income will go to care, and the government will supplement what else may be needed. That is attorney work also and you MIL funds pay for that as part of POA.
These are some few things to think about. If they trigger other questions, GOOD. Come back and ask them one at a time and all here will attempt to help you.
Again, my congrats on being the only living DIL who LOVES her MIL--at least that we've seen of late. My best wishes out to you.
With dementia it is going to be difficult for her to accept her diagnosis. She has her reality that is where she is.
With many "HOME" is not an actual place.
Home is Safety
Home is Memories
Home is Loved ones
Home is when she was healthy
Home is any number of things often different at different times.
Reassure her that she is safe
Reassure her that you love her.
Reassure her that you are there for her.
And I have to do this because it is me replying...
Have you thought about Hospice for mom?
With Hospice you would get a Nurse that would come in and check her 1 time a week at least.
A CNA would come at least 2 times a week to give her a bath or shower.
You would get the equipment that you need as well as all the supplies you need delivered.
You might want to talk to her doctors about Medical CBD to calm her.
It may be time now for you to consider placing her in a memory care facility. She is never going to accept that anything is wrong with her ot that she needs help. No matter where she goes she is always going to try to go "home". "Home" can be a childhood home or a happy time in her life. You nor anyone else can bring her "home". Only God can do that. Find a memory care.
Also, she does not have too much to qualify for Medicaid. Whatever assets she has like bank accounts, insurance policies, or real estate will have to be cash liquidated and that money spent on her care bill. When that money is gone whatever facility she's moved into will take her monthly income and Medicaid will pay the rest because she will qualify then.
Please place her in the appropriate facility to meet her needs before caregiving and burnut destroys your life.
As much as I loved my mom and wanted to do my best in caring for her, it was killing me. I was neglecting my own needs to care for her.
Strive for a healthy balance in your life. We don’t have to ignore everything that our hearts tell us, but we do have to start thinking rationally about our situations with our heads.
I chose to speak with a therapist to sort out my feelings. It definitely helped me understand my emotions.
The very first thing that my therapist said to me was, that I had to accept that caring for my mother was a burden.
I was upset to hear my therapist say this at first, but after processing his words, I knew that he was correct in his assessment of the situation.
Don’t hesitate to speak with someone about your situation. Do what is best for your mother in law and yourself. Your life is equally as important as your mother in law’s life.
Also, if your mother in law wasn’t in her current situation, she wouldn’t want you to give up your entire life for her.
Sadly, she isn’t able to decipher what is best for her, due to her dementia.
Discuss your concerns with an elder attorney who has experience in this area. You could also contact a social worker to hear their thoughts.
When our family made the decision to place Mom in an end of life hospice care home, she told me how sorry she was that I placed my own life on hold to care for her.
I realized that I taught my mother to become dependent upon me.
Mom was content in her hospice care home and extremely grateful to the staff who cared for her. She died peacefully.
Most importantly, don’t discount how much that you can accomplish by being your mother in law’s advocate.
Advocates are often able to help more than hands on caregivers, by overseeing the care of your family member, provided by a professional staff.
Best wishes to you and your family.
I agree, you probably shouldn’t be leaving her alone. First, does she have any actual diagnosis of dementia? With all the forgetting it could be the issue. However stress, poor health etc can all mess with your mind a bit.
Id start with getting her tested for dementia. Tell Dr before hand she is reluctant. Tell her it’s just a check up. She doesn’t have to know exactly why she’s at Drs. Once you have a diagnosis, then you can begin planning on proper care.
When she wants to leave or get her car, you have a couple of options to handle (you won’t like them). First distract her with something she likes…take her someplace, give her a task she could enjoy, fix her a treat, put on music she likes or Tv show. Or, lie. It’s a real thing called therapeutic fibbing. Tell her car is being repaired or battery is dead. Tell her house is being repainted. Again, these things will work better if she has dementia. If she’s sharp enough to know that’s bull, go back to pleasant distractions. Remember, there’s no perfect answer here. There are choices. You may not like any of the choices, but that’s all there is. So don’t be reluctant waiting for. Perfect answer. There isn’t one.
Besides the diabetes, kidney issues and depression find out if she has dementia. Drs can suggest meds for some temp help. As well as antidepressants and antipsychotics.
You will probably have to hire additional help around the house. Get a diagnosis first. So you hire appropriate help. There are many helpers out there, but you need to know for sure what you’re dealing with. Once you have diagnosis of dementia, contact your local Area Agency on Aging. They can hook you up with volunteers, palliative care from hospice (usually covered by Medicare), caregiver grants. Also consider joining caregiver support grps, either online or in person. Educate yourself on how to best handle your mom. Go to Alz.org or dementia.com…lots of great info. But again, first find out if she has dementia!
You will need to speak with Elder Care attorney to see how you can protect her assets.
its a lot I know. However you can’t just walk around in the dark. Find out what you are dealing with.
Is her depression being treated? You say she’s feeling better now so hopefully it is.
Have you seen a certified elder attorney? Mom needs a Miller Trust for the too much income aspect to qualify for a NH and a geriatric psychiatrist to help with her meds. Is she seeing an endocrinologist for her diabetes?
I am glad she is feeling better.
The concerning part of your post is “I just want her to accept diagnosis and help but she continues to say she is fine, not crazy, and will not have anyone telling her what to do.”
This part is where you can help. Mom has a broken brain. Her brain can’t process this information you are providing her.
Anosognosia is a condition where your brain can't recognize one or more health conditions. It's extremely common with mental health conditions like Alzheimer's disease. So since mom can’t comprehend that she has Alzheimer’s, your trying to get her to accept it is frustrating to you both. So drop that part of your approach with mom.
Teepa Snow on YouTube has short informative videos that can demonstrate for you ways to engage with mom to better gain her cooperation.
And Wiggi, sadly, you are probably on your mom’s last nerve trying to boss her around. You need a new approach. Join an Alzheimer’s support group in your area, watch Teepa Snow, find a certified elder attorney to help you find out how mom can access Medicaid services in your area and let mom pack all she wants if it keeps her busy. Be her pal. Blame it all on someone like the doctor since she can’t accept the diagnosis. Seek the best care possible for you both. This is a long road and you simply won’t be able to manage it by yourself even with your best Wonder Woman outfit. 🤔🥰
Not Medicaid as health insurance but Medicaid to pay for custodial care in a facility. Why is she ineligible?
And
You know this how?
Not being eligible because she applied and has a transfer penalty placed on eligibility is quite different issue to work through than she’s ineligible because she has $67,890 in savings and your State has asset max at $2,000; or that her monthly income is $500 higher than the maximum allowed for your State. Ineligiblity probably can be dealt with.
So why is she ineligible?
I always wonder when posters put in, as tho it is an excuse with whatever dire circumstance they are living in, that their elder cannot qualify for Medicaid "because he/she has too much income".
Would be so helpful to know what they mean by that.
You didn't cause her health issues. Old age hits us all. Of course she is depressed, she knows her life is winding down, and she was independent.
I'd try to coax her to have something else to do but be sad and depressed. Maybe get her to go to the park, a movie, or the senior center. Go play Bingo, get some craft projects to do together. Plant some flowers.
Don't let her misery take over and be her final memories.
She could be worse (in a wheelchair, have cancer, or in extreme pain.)
As Burnt said, it may be time to place her in the appropriate facility to meet her needs, before caregiving and burnout destroys your life.
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