What approaches do you use for decision-making when there are no “right” answers?
Mom is 99 and has Lewy-Body Dementia with some vascular dementia as well. Her body is strong and robust, but it seems that every few weeks another few gears in her brain cease to function. We can still communicate. She still walks with a walker. Tranquillity absorbent underwear takes care of incontinence issues most of the time. But her knees are painful enough that sometimes she needs help getting up. She weighs 190; I weigh 145. With tools I can manage without injury, but worry about what’s next. Getting her in and out of a car is nigh onto impossible, so outings are almost nonexistent for her. Her ownership of a farm is all that stands between her and Medicaid eligibility and I have found an Eden Alternative long-term care center that I like and trust and think she will like. And I do look forward to having the freedom to do spontaneous trips with my husband again. The dilemma is financial. Should we pay a lawyer and liquidate the farm to pay for her care there? Or should I tough it out a while longer? She has lived with us for 9 years of slow but steady decline. Even though she is comparatively easy, I’m about worn out. Now this is where it sounds heartless. If I thought she was going to reach 100 then pass on, I could cope with another year and it would seem the financially responsible thing to do. But if she’s going to live another 5-10 years, the whole formula changes. I realize there’s no right answer here, unless it is that I should have planned better around the 5-year Medicaid look-back. I didn’t. We’ve discussed the alternatives until we are blue in the face. Any thoughts, insights, experience, or advice? Mostly I’m looking for windows onto paths I may have totally missed so far. Thanks for helping me think.
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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.
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!
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.
And then there are the resolutions, which sometimes can be as challenging.
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.
Do you want the farm?