What approaches do you use for decision-making when there are no “right” answers?

I would recommend a book entitled: Being Mortal by Atul Gawande. My mom died expectantly on Jan 28, 2017. She had Alzheimers disease along with a multitude of medical and mobility problems. Unfortunately I heard about this book following my mom's death. Years earlier my mom decided to live in a 'great' assisted living facility. One day they informed me that mom would have to move to a long term care facility. We found a wonderful, highly recommended long term care facility where we were assured that mom would be able to stay in her room until she died. That lasted about 6 months when we were told that mom would have to move to their 'locked' unit. Following a meeting with the Administrator, Medical Director, Director of Nursing and the Director of Social Work it was decided that mom could stay where she was. If I had listened to the 'experts' I would have sentenced my mom to live in an environment that would have not been in her best interest. You know your mom the best, your care for your mom the best, so why not think out of the box as to what accommodations can be made for her for the rest of her life. Currently I'm a caregiver and durable POA (Power of Attorney) for my friend who is 84 and has Parkinson's disease. My primary concern for her was her safety. She lives alone in a house her and her deceased husband had built 45 years ago. Following some falls, and subsequent surgeries, her doctor advised that she should live in assisted living. After I read this book, it helped me to understand that no matter what a facility looks like or has a 'great' reputation, her happiness mattered more then any building/staff could offer her. After doing some minor remodeling she back in her home and happy. I hired Visiting Angels who provide care and supervision from 7 A.M to 9 P.M seven days a week. Please read this book and find a support group for yourself. I have never experienced such a profound loss as I have when my mom died. You mentioned in your post that... "But if she’s going to live another 5-10 years.." be grateful that your mom is still here now. I would give anything to spend time with my mom again. Kay

Regardless of whether your mom has 5 minutes or 5 years left to live, I would strongly recommend you read: Being Mortal by Atul Gawande. My mom died unexpectedly Jan 28, 2017 and I regret not having the opportunity to have read this book prior to her death. My mom had Alzheimer's along with a multitude of other struggles. I believed that 'putting' my mom in an assistant living facility would be in her best interest. After awhile she was forced into a long term care facility where we were assured that is were she would stay. After about 6 months staff decided that mom needed to be in a locked unit. After meeting with the facility doctor, social worker, director of nursing and the director of the facility they allowed my mom to stay where she was. You know your mom better then any staff, you care for your mom better then any staff so why not put in place some assistance for you and her in the home she knows. The aforementioned book helped me to realize that their is no place better then home no matter how the facility looks or is rated This book is written by a doctor whose own family had to face decisions such as what you are describing along with patients he treated. I am currently a caregiver for my friend who is 84 years old and has Parkinson's disease. She has no family and my primary concern was for her safety. This book enabled me to get her out of the 'wonderful' assisted living facility, hire staff to assist her in her home from 7 A.M. to 9 P.M. seven days a week. She has mad a 180 degree change from being depressed to being happy at her home again. As it relates to transporting your mom, I bought a used mobility van which enabled mom to go anywhere. I have never experienced a loss as devastating as my mom's. I miss her more then I can say and would give anything to spend time with her again.

I can see your situation. I'd talk with her doctor and ask for him to be forthright, do my own research, and consult with an Elder Law attorney who is well versed in issues that you are concerned about, regarding Medicaid. I like the idea of asking about Hospice. There may be more assistance with them that could help.

There is a chance that she will live to 102. I use that age because I had/have 3 friends who made it to that age (2 of whom are now deceased). While it's a rarity for a person (myself) to have 3 friends who were/are centenarians, it seems to be a growing percentage of people who do have centenarian friends. That said, do not feel badly if you decide to place her in a facility as you have done your "just due."

You and your husband are not promised another day in this life. People our age die too or get sick. Keep that in mind as you plan. Plan quickly and take back your life. As long as you know mom is well cared for and you won't ignore her it will be fine. You have gone above and beyond. May sound harsh, but I decided to get my life and my husbands life back. Moms in a wonderful place and our inheritance is dwindling but thats ok.

Both an elder law attorney and a trusts and estates attorney would offer you valuable insights and options.

Do you want the farm?

An Elder Law Attorney is going to be more helpful than you could imagine. They’ll be able to give you several options based upon the laws in your State. In Texas we were able to place my Grandmother’s home into a Lady Bird deed; Medicaid wasn’t able to count that asset against her. Navigating the Medicaid application process can be arduous. What we want to avoid is having to apply in an emergency. Medicaid doesn’t care if you can no longer provide the level of care she needs. They’re in the business of rejecting applications, not approving them. An Elder Law Attorney is worth every penny.

It also sounds like your Mom would be Hospice eligible.
That would get you more help a few times a week, a nurse in once a week as well as a Social Worker that can help you.
You would also get the equipment that you need to help her. Anything from supplies like briefs, wipes, gloves, hospital bed, Sit to stand, Hoyer when it is needed.
And more important you would also be able to take advantage of respite care, this is when they would place your Mom in an inpatient unit for a week so you could get a break. they would also place her if pain became unmanageable.

There is no "RIGHT" answer as each person has a point that they come to the conclusion .."I can't do this any more"... For me it would have been if my Husband had become violent or if it became a safety issue for him or for me. I was lucky it never came to that so I was able to keep him at home.
The question is what is right for YOU and your family. I am sure if you had talked to your Mom 20 years ago about this she probably would have told you that she would not want you to put yourself and your family on the back burner for her. She raised you to get married, leave home and raise a family and be happy. That is what all (most?) parents want for their children.
At some point placing her in an environment that is safe and she will be cared for 24/7 will allow you to become a daughter first again not a caregiver first and a daughter second.
There are no easy answers and there are no "right" or "wrong" answers it is what is right at the time.

BTW, Linda, I think this is an excellent question b/c it addresses a situation in which I think many of us find ourselves - too many priorities to address at one time, and how to distinguish and decide which are more important.

And then there are the resolutions, which sometimes can be as challenging.

(((((lindabf) ))))))) If you are getting burnt out there need to be some changes. It sounds like the time is coming when you will not be able to continue to do this, or at least not without assistance. You don't want to wreck your back lifting.

I agree with both posters above. See an elder attorney well versed in medicaid to see what your options are regarding the farm property and your mother's health needs, Assuming that you have POA health and financial, discuss your mother's care needs with her pcp and be sure Eden Alt offers enough care for her for the upcoming years. Her needs will only increase.

Another point - if you liquidate the farm that she owns to pay for her care until her assets are below what medicaid allows. the costs of that liquidation should be paid from her funds - not yours.

You don't sound heartless at all, but burning out. The finances are realities which have to be dealt with.

My reality is that my mother is 105 and I am 80. She has vascular dementia and is virtually immobile - bed and wheelchair bound, needs to be fed and lifted with a Hoyer lift. She is in a facility which does a good job. Her heart, lungs, liver and kidneys are all fine and she doesn't get infections, or have diabetes, so she can be around for a while yet. I have stopped anticipating that she will leave us anytime soon and I get on with my own life too, as time is passing.

Please make some changes to make it easier on you. Your mother's input on this may, or may not, be useful since she has LBD and VaD. One of the early signs that mother was developing vascular dementia was that she started making bad choices as regards her care. Your health and welfare, and your life with your hub matter too. Your basic responsibility to your mother is to see that she is well cared for. That does not mean you have to do it yourself.

I'm not an American so my knowledge of Medicaid is limited, but I think that a working farm is treated differently than a personal residence when it comes to eligibility, if you haven't consulted an elder law attny who understands the ins and outs of medicaid law then I think that is where you should start.
I was in the same boat with my mother, I never would have believed it possible for her to live to be 90 and she is still here 8 years later, although definitely winding down and in a nursing home now. At some point you just have to make the choice that seems best for you and then work out the details from there. And bravo at finding an Eden alternative home, I'm envious!

Several questions in your post...

1. When there are no right answers, I think you have to weight the pros and cons of each and choose the ones with the best fit. Sounds simple, but it's not. It might help to create a ranking system as to issues and their value, i.e., is separate living at the top of your list, or is it medical care for her? They're not necessarily inseparable, so that compounds the issue.

I have to do that repeatedly b/c most of my father's needs are immediate, and sometimes so are mine, so it becomes an issue of which priority need takes priority over all the other high priority needs.

2. Do you have any paid help? If not, would that be an option for you, and especially your mother given the lifting issues?

3. Have you investigated palliative care to get in home long term support?

4. Personally, if the Eden-Alternative place is a good one, I think that would be an excellent choice, assuming the farm will yield enough through a sale. From what I've read here, and I'll leave it to others to offer more information, there might be some other issues if the farm is income producing.

Are you assuming that selling the farm would remove an asset and qualify her for Medicaid at the Eden facility? If so, don't forget that the sale income would raise her asset level which would probably disqualify her.

There are pooled trusts which could address this issue though.

5. And one of the most important issues is how your mother feels about going to an Eden facility, or just away from the home she's lived in for years. Given her mobility issue and what seems to be an accelerating dementia, does this facility have the capacity to handle those needs now and in the future? And how does she feel about the situation? Will she refuse to move?


So I think the issue of in-home care, at least for a while, vs. long-term care is a priority one. Your feelings vs. her feelings are also priority. And of course the funding of her out of home care is another priority.

What I would probably do is begin researching each aspect of each alternative. That at least will give you a better idea of what's available.

It might be, e.g, that 24-7 in home care will give you the break you need. Or maybe just care during the day would suffice.

I think that "fleshing" out the alternatives will help as a first step, so that some can be eliminated, then you can move further on to the final decision making.