Dad with CHF might be at the end
Dad is in an ALF with mom who has stage 5-6 dementia. The ALF called last week saying dad’s CHF is getting to a point they cannot treat and monitor it in house, and recommended he go to ER to be treated there. He was just released from ER 10 weeks ago after having fluid drained. It seems he is right back again to where he was, and actually it seems he is even retaining more fluid than before. He also has COPD. When I asked him about going to ER again, he refused. He said he does not want doctors fumbling around. I said I support whatever he wants. The ALF had told me that dad is now also showing signs of early renal failure. Dad had also been double incontinent for a number of months.
There is no crystal ball, but I just think dad may be in the last weeks of his life. He started telling me about where he wanted to be buried and where he wants the church service. He has a pre-paid account he setup at a funeral home in 2020 and he gave me the phone number to call. I think dad is accepting the possible result of his decision.
I guess my question is, what is the best I can do at this point? Do I just wait around until the end? I feel like I should be doing ‘something’. The ALF said dad qualifies for hospice, and I agreed to talk to someone. I refused it however when they said they would discontinue his prescription meds. Dad still benefits from them. I do not want to have those taken away.
in the meantime, my sister is talking to an attorney to get him to change the POA to be only her name. Her husband has told her to try to get ‘gifted’ 15,000 annually from the estate because she thinks it will be a tax advantage. She is also tracking the number of hours she spends with dad and mom because she wants them to pay her 25 dollars an hour for ‘working’ for them and doing what a paid caregiver could do. I feel like my sister is exploiting the situation. However, I have no means to stop her.
This disturbs me greatly. My sister has always been my parent’s favorite child. My parents routinely disregarded most of what I did and they still do. Dad recently told me he loved me even though he does not act like it. It was one small statement of reality. How ironic now that their favored child is looking to benefit from their condition. Sometimes I wonder why should I try to save my parents from a state that they perhaps created? This takes a toll on me and I cannot see how it will work out well for me regardless what I do. it leaves me drained. Nobody gets it if I try to explain. Thank you.
I can only speak to the end-stage CHF, hospice and medications. My mom died of CHF. 8 weeks before she passed, she enrolled in hospice.
The decision to take mom of meds was actually ours to make, after hospice's recommendations. What they told us about the meds was: they (hospice) would not be the providers of many of her heart medications, but if we chose to keep her on them, we were absolutely able to - only hospice would not supply them nor arrange for the prescriptions. If we arranged to continue to get the scripts from her doctor(s), we could still get the meds and her insurance would cover them as they had done in the past. And as Barb said, the only meds they recommended stopping were her heart meds; hospice still provided her thyroid medication without any issue whatsoever. If dad's COPD meds are keeping him comfortable and making his breathing easier, then I imagine they would continue him on them.
Maybe you need some more clarification from hospice. I would sit down with them and listen to what they have to say. They will explain everything to you in detail, and you can ask specific questions about dad's various meds. Just sitting down with them does NOT obligate you to hire them. And if you find, after you hire them, that they are not doing what you thought they would be doing, or you ae dissatisfied with their care, you are allowed to "fire" them with no penalties.
If dad is in end-stage CHF, believe me, you will want the comfort meds close at hand. On my mom's last lucid day, she went from ok to oxygen starvation in literally 30 minutes; if I hadn't had the morphine and the haldol from the comfort pack at hand, I don't know how I would have helped my mom through those last hours.
Sadly, you are far from being alone in this. Many people who SHOULD be the POA for their LO are not, and the grasping, money-hungry family member IS.
I wouldn't push dad to do anything he doesn't want to do. respect his decisions to be MAKING decisions about his EOL. I wouldn't rat out your sister--it's not worth it.
You be dad's advocate in whatever care he wants, whatever he feels he needs.
YEs, Hospice care would remove some of his meds, but not all. Take the time to talk to a Palliative Care/Hospice Care company. Help dad to decide what to do and then support him in it.
Any money that your sister 'pays' herself for anything she does for dad needs to be carefully documented. I've never heard of anyone being 'gifted' an amount of money like that to evade taxes.
If it's legal to do so, then the attorney will be on board to help make that decision.
It's baffling to me that people are so grasping and selfish they start to clean out mom & dad's coffers before they're gone.
Um, and you still have MOM's upkeep and bills? YS shouldn't be doing anything that's not aboveboard. Keep your nose clean and when it all comes out--you will not be the one in trouble.
Dad and Mom's money is for THEIR lifestyle and upkeep, not to shore up your sister's life. She has to know that!!
This is the time to be a loving daughter and take care of dad. Make sure he is comfortable and cared for--please try to keep family drama to a minimum!
i just feel like I am trying to save them from themselves and working against a current alone. They do not see the questionable aspects of their beloved oldest daughter that I see. They will likely sign paperwork my sister has her attorney write up. I can try to intervene, but it seems I am the only one who even cares to try to stop her, and I have no legal backing to redirect her. She does not listen to me, nor does she want to cooperate with me. The more I question, the madder people get at me. It is really thankless.
And you or your dad or whoever is his POA can have him kept on any medications you feel necessary.
Hospice can only recommend. You do not have to go along with what they recommend.
My late husband was under hospice care for the last 22 months of his life in our home and there were several times when they "recommended" that he come off some of his medications, but because I didn't agree with their "recommendation" his medications continued and hospice/Medicare continued to pay for them.
My husband too carried a lot of fluid in his body while under hospice and he remained on Lasix to try and keep the fluid off, as hospice isn't going to allow someone to drown in their own body fluids. He also had to take potassium because of the often higher doses of Lasix he was taking.
Please know that the dying process can be very painful as in the case of my late husband, and you really do want hospice on board to help your dad with his pain.
Have another conversation with them or even talk to another hospice agency, and you will discover that they really are on yours and your dads side, and want to make his transition as smooth as possible.
And remember, it's the family that has the final say about what dad receives or doesn't receive as far as medications go.
God bless you as you take this final journey with your dad.
The pulmonologist who was treating mom's pleural effusions told me to stop pokin holes in my mother and to let nature take its course. The doc's dad had died of CHF the year before.
Talk to more than one hospice provider. If it's the CHF that is the qualifying disease, then yes, THOSE meds will be removed. But other meds should not be. Discuss, and advocate for you dad's comfort.
Your dad's tired of being poked at. I commened you on not pushing your dad to do more. You are doing the right thing.
As for your sister, she sounds think the golden child of the family, and they can do no wrong in there parents eyes. It's a typical dysfunctional family dynamics of the youngest sybling. They feel like they are owed everything.
I'm sure your dad loves you, don't think he doesn't. This golden child disfuction is just what happens in many families, maybe a personally disorder or low emotional health, who knows the reason, but I do know for a fact and experience that you are not alone.
Best of luck to you, keep us posted and if you need anything else , just ask 😔🙏
He will get better nursing care in a NH.
(((hugs))).
In some cultures (mine, for example) answering a question with a question is a way to gain clarify about what the questioner is really asking. It is not sarcasm and doesn't imply an disrespect.
The problem is that his current meds are not working anymore. That's why he had to go to the hospital and get the fluid drained from his lungs.
If he wants to continue his COPD meds he will need to go to his cardiologist to see what they can do about the fluid starting to build up at his current medication level because he will be back at the hospital in short order unable to breath again as the fluid levels go up. The heart can only handle so much and his heart is getting weaker that's why the current medication level is not enough to keep the fluid at bay.
It is a tough situation to be in as dad is dying but he isn't ready to die right now - he just is tired of going to the ER and being poked and prodded by doctors. Unfortunately at this stage of his disease he has no choice but to go to the ER because death for him will be very painful if he decides to let the fluid build up and not get it taken off.
Death is not pretty for so many people. I hope dad with the help of his doctor can come up with a solution that works for him.
As for your sister - shame on her. But your parents are allowing this to happen if they sign anything she puts in front of them which is very sad too. I don't understand parents who pick and choose favorite siblings like this and many times it is the golden sibling that screws over the parents.
You can't save your parents from their stupid choices. I wish you would choose yourself to save as you matter too. What you need and what keeps you healthy physically and mentally should be #1.
As for changing the POA, maybe it’s best for you to back away from that because it will only cause you more stress and anxiety. I wish you peace as you move through this.🙏
they will help you through this. They will help dad through it as well.
And they may even say that mom would qualify for Hospice as well.
Question is will mom transfer to Memory Care or will she be alright in AL?
Hospice did not take my Husband off all his medications. We discussed the ones that probably were not necessary. It was my choice to continue or discontinue them
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