My mother, age 94, has stage 4 kidney disease, a tendency to get blood clots, advanced dementia, and high blood pressure. Her doctor recently suggested hospice for her and offered to stop or reduce her prescription for Eliquis. As the oldest daughter, I have both medical and financial POAs.
Apparently, the doctor wants us--me and my two younger sisters--to decide when or if Mom's Eliquis should be discontinued. (Can we just leave it up to him to decide? After all, he's the doctor.) Stopping it suddenly could cause her to have a fatal blood clot, but I've read that Eliquis also has some serious side effects. Serious bleeding could occur if she were to fall, for example. She can just barely walk anymore and has to grab onto the walls or furniture to make it to or from the bathroom because she's forgotten to keep using her walker. She is basically incontinent, doesn't seem to have any short-term memory left, and doesn't remember our frequent visits. Also, much of the time, she makes repetitive noises that sound like wha, ha, ha, ha, wha, ha, ha.... Other times, less frequently, she'll be able to say a few short sentences (for example, "It looks like nice weather outside, where are we? and will it rain today?").... It doesn't seem like a high quality of life, and I wouldn't want to linger myself if I were in her condition, yet it's hard to say how she feels about it. Back when she didn't have dementia, she did sign a DNR form, though.
I visit her in the mornings and my middle half-sister visits her in the late afternoons. She usually sits on a couch all day with the radio playing and the tv on mute because she doesn't want to leave her room. Our youngest sister currently lives out of town but will be in town for the holidays in about a week. We're planning to meet with Mom's doctor at that time, to discuss when or if Mom's medications should be discontinued.
The problem is, my sisters disagree about what should be done. One of them thinks Mom should be allowed to stop the medications and die naturally, while the other half-sister (Mom's favorite) wants her to continue taking the medications indefinitely, which could potentially keep her going for some time. I tend to agree with the sister who thinks the medications should be stopped, but I don't want to be the decision maker because I'm sure that I'd be blamed for Mom's death if I were to decide. The middle half-sister is already quite hateful towards me and has all the symptoms of NPD that I've read about.
I 'd say we all love our mother but it wasn't always easy growing up with her, and I probably had the worst relationship with her. My dad had her put in a mental hospital twice--once when I was five and again when I was about 11. My sisters hardly remember that but still experienced her mood swings, paranoid thoughts, etc. So, I don't want to feel guilty about making a decision that could hasten her demise. On the other hand, visiting her all of the time leaves me feeling tired and depressed. A lot of the time, she's kind of grouchy with me and will say things like "shut up" or "goodbye" when I visit. She even hit me recently, because I offered her a dental flosser, so it's not always pleasant to visit her. I do it mainly so I won't feel like I didn't do enough after she's gone.
Next month, her assisted living bill will increase so that we'll all be paying about $862.00 each per month to keep her where she is. We took her on a tour of another assisted living place back when it became clear she could no longer live alone, one that would take Medicaid if she ever needed nursing care, but she insisted on the private pay place she's at now. Now, in her frail state, my sisters won't agree on moving her to a Medicaid nursing home, and such a move would probably kill her anyway (or any potential roommate since she doesn't like people and would probably be mean to anyone unlucky enough to become her roommate).
What would you do in this situation?
Getting back to your health proxy. I recommend that you make the decision and not fill in the details to sibs. This leads to less discord and prevents your sisters second guessing and elevating tensions that may be long lasting.
Apparently they often reach clarity and happiness as all those chemicals leave their system. Makes sense to me.
Perhaps if there is conflict between siblings it will be best for doctor to make decision.
"Mom's Doctor wants Mom off of the Eliquis. We are going to a half dose for a month and then we will discontinue per Mom's Doctor."
"Mom's Doctor wants Mom off of the Eliquis. We are discontinuing per his instructions."
"I've had additional conversation with Mom's Doctor. He reconfirmed to stop the Eliquis so we are stopping the Eliquis."
To your half-sister who wants her to continue living, she needs to realize forcing a woman to continue living this way--and worse is likely in her future--is selfish and cruel. To force a woman to live this way is also an indignity solely because "I want her to".
The bottom line as POA, your decision must benefit your mother.
Elliquis is not without risks. Perhaps your sisters should look into that.
They won't work forever, so ask the doctor if she's getting any benefit at all from them.
1) “I'd be blamed for Mom's death if I were to decide”. M is going to die which ever decision you make. It could be soon or not soon. The Eliquis could kill her, coming off Eliquis could kill her, a fall could be the end, and so could just increasing old age. Whether or not you are blamed, her death will not be your fault.
2) Can all three sisters meet the Doctor for information. Ask the D about the risks on or off the drug, in or out of any facility. Ask if she is still AL level care, or if she would need NH. Then you all go away and talk about it.
3) For the talk, decide the terms on which you will continue to care for her, if that’s the decision, and ask them to do the same. It includes visit length and times, and financial contributions. Make it clear if you aren’t willing to continue your daily visits – that’s not something for them to decide.
4) If YS wants to continue this, she has to commit the same length of time for visits (no matter how inconvenient), and the same $ (or substantially more $ to make up for contributing less time). This is not ‘you being difficult’, it’s the choices all siblings have to make about care. YS can’t opt out of the problems but force her own choices.
5) When you know how each of you would be willing to contribute, and to what, you should know if it's a workable arrangement. If it's not, then you have to use your POA.
6) If it's not clear, and you really don’t want to be the decision maker, you can always flip a coin. Make it valid for 3 months? 6 months? Then to be reconsidered. But in the meantime, you change to ‘the terms on which you will continue”. If your terms don’t include daily visits, you don’t continue them.
7) When this is clear, you personally inform the Doctor of the decision as POA.
Would this strategy work for you?
If your mom can barely walk why is she trying to move around? My mother’s hospice staff had a catheter placed in her and she wore depends. They changed her as needed.
How often is the hospice staff visiting your mom in the assisted living facility?
If you can move mom to an end of life hospice facility or care home that is your best option. My mom received excellent care in her hospice care home.
If you are the POA, you should make the decisions regarding your mother’s care. Your sisters are entitled to their opinions but you were appointed as the person who has the authority to make important decisions.
Don’t be concerned about how your sisters react. Tell them that you are following the doctor’s advice.
Wishing you peace as you continue on in your caregiving journey. It’s never easy. You have our support here on the forum.
Also, the quickest way to bankrupt yourself is to pay $900 a month because your mother didn’t plan well for her golden years. Do not pay one dime toward her care. That is your money for your rainy days.
You and your sisters should not be paying for mom's care. Over $800/month each is A LOT! Time for mom to move to a medicaid nursing home. A move will not kill someone, IMHO. It's never easy for them to adjust but it will be OK. She is 94 and obviously that is quite old by any standard. She is not going to recover. So keep her comfortable and don't confuse quantity with quality. My biggest goal would be to keep her pain free and hopefully content.
If your sisters don't agree with some of your decisions, so be it. Time to do what's right and don't worry about pleasing them. Especially the one you don't along with well anyways.
Best of luck.
Sometimes the POA is selected not because they were the 'favorite', but because the person who asked you to be POA trusted you to have a the ability to step back and look at the big picture, and make hard decisions. You've presented your pros and cons very succinctly here. When your mother requested a DNR I'm guessing she was healthier, and as you say, she didn't have a dementia diagnosis. Dementia in itself is a terminal disease. Hospice is usually recommended when you may be reaching your last 6 months (though people can go on and off of hospice for years).
My mother is 94 with dementia, probably stage 5-6, Otherwise healthy. But if she ends up in the hospital she's going to get fairly basic treatments. I've backed off on a lot of her meds. She wouldn't want to be in stage 7 dementia. She'd be horrified.
So for me, I'd go with the doctor--they're giving you an easy out with your sister because you can say you've decided to follow their reasonable recommendation, given that she's a hospice candidate.
Best wishes.
Once placed in Hospice, the pt no longer has regular Dr visits--maybe only for a UTI, or if the hospice choice is to treat or not treat any kinds of infections.
She's 94 and doesn't sound like she has much quality of life. If this were my mom I would get the Dr to sign off on Hospice and dx all meds except for what I mentioned.
We're there with my MIL. Almost a year now since we were told she had 2-3 weeks. She dxxed her HBP med, her cholesterol med, and she takes 2 different kinds of benzodiazepenes and tramadol for pain. (she doesn't seem to be in pain, but I have to admit I do not see her).
She chose to continue with her shots for Macular Degeneration.
You know, everyone hears that 'if we move mom she'll die'. I personally have never seen or heard of anyone who DID pass simply b/c they didn't want to be moved.
We stopped the meds when they stopped working seven months later.
I think it is a good idea to consider the transition to a NH facility. Since she is so frail it will probably happen soon.
It’s always best to think ahead. Things just go along for a long time and then suddenly there is a new normal.
Your sisters need to start getting used to the idea.
Your mother will die of something eventually and no amount of medication or lack of same will change that. I would leave this in the doctors hands. I would tell the doctor that you are MPOA and that your sister's disagree with one another; that therefore, you as MPOA are going to ask HIM/HER to make this decision, and you as MPOA will follow his/her recommendation. Let your sisters know YOU ARE IN CHARGE, and that not everyone can be made perfectly happy at this point, but that as the person making the decision you will make it, and you will live with the consequences. Let your sisters know that being 94 with stage 4 kidney failure is more or less the definition of dying. Let them know that you will not be going to dialysis (which I hope and pray your Mom is not on at this point) and other heroic measure to prolong life.
I am afraid you are in a position of authority you must embrace. You will not and cannot keep everyone perfectly happy.
The nosebleeds stopped immediately and so did all the ugly bruising she had all over her extremities from the drug. She wound up having a small stroke sometime afterward, we don't know when, but it showed up on a CT scan a couple years later.
Mom died at 95+ from advanced dementia and CHF while on hospice care. I agreed to take her off all meds but her anti depressants once she went on hospice, because she was thought to have 6 months or less to live. What's the point of using life extending meds at end of life??? I actually prayed to God to take mom Home on a daily basis during the last year of her life, she was so miserable.
Your siblings can argue till the cows come home about what meds to continue or discontinue for mom now. But the truth is, God determines when mom dies, not them or hospice or anyone else. She'll pass when it's her time to go, with or w/o blood thinners.
Best of luck to you.
Your mothers wants no longer matter, it is now down to her needs. None of you should be supplementing financially, Medicaid is there to help her.
IMO you are overthinking all of this, you are doing more than enough for her, there should be no thoughts of "I didn't do enough" that thought process is uncalled for.
Most of the time when those thoughts come to mind it is really about what others think you didn't do and one superimposes that into their sub conscious mind.
She is 94 in terrible health, exactly how long do you think she will or can live?
Me, I would rescind and get out of this toxic circle.
Sending support your way.