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My Mom has L7 Alzheimer's, depending on the day 7a/7c. She’s been on hospice for almost two years- was L6 with secondary chronic kidney disease. She also has high BP. Her new hospice doc believes at this point discontinuing the meds for BP is something I should consider since there is minimal benefit. Mom has no quality of life - totally incontinent - unable to walk- recognizes me but I don’t think she quite knows who I am anymore-doesn’t know her last name- you get the picture... it pains me to see her this way, but I can’t help but feel like Dr. Kevorkian if I give the green light to take her off the BP pills.... anyone else go through a decision like this?

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I have, but the meds were cardiac meds and the decision was made with a cardiac practice we've used for close to a few decades.

I think the first question is what could be expected to happen if the BP pills are D'C'ed? Is there any interaction with the kidney disease? And how will it affect her current condition and eventual end of life?

As you observe, her quality of life is far from the best, she is in hospice, and has been so for about 2 years. I certainly don't believe this is a "Dr. Kevorkian" decision, but I do think that you have to weigh the value of her life at this point in time, and it doesn't seem to have potential for improving. So, what would be the merits to remaining on BP pills? This is something the doctor should address.

If you don't get answers from this new doc, ask for another.

And personally, I think Dr. Kevorkian had the guts to do something that laws have been restricting for years, while people suffer.
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Hi Clarise1.
Yes, I have gone through making a decision such as yours. My 95 year-old mother has Alzheimer's and was living in an AL facility since 2015. At that point, she no longer was going to her PCP/specialists. She was completely mobile and able to dress herself until the pandemic came along. She ended up with severe dehydration and contracted the COVID-19 virus. I had her sent to the ER where further testing showed bi-lateral pneumonia and a severe UTI on top of everything else. When she was released, she ended up in a physical therapy/rehab facility for three weeks which gave me some time to make important decisions as I was not going to be sending her back to that facility. It was at that point, that I had contacted hospice which I had for my dad in 2004. Hospice was an option if she qualified. I knew going in that they mainly want to keep them comfortable and they don't look at giving medications in the same light as a regular physician does. I do remember when she was released from the Cardiologist's care he said the blood pressure medication could be stopped because it would be fine for someone her age to have a slightly elevated BP. Finally, hospice said she was qualified for their care due to losing 20 pounds, not eating and being unable to walk. At that point they wanted to go over the list of her medications with me and discontinue as many as possible under the hospice doctor's recommendations. Of course, as her daughter and P.O.A. they needed my consent. I started to feel guilty or as you put it "like Dr. Kevorkian". But they went over everything so thoroughly that I agreed to what they suggested. I have heard from two sources that the Donepezil (Aricept) is best taken at the beginning stages to help slow down the progression of the disease but, later on it is no longer effective. That being said, we agreed and she is currently taking just a higher dosage of Tylenol for her arthritis/back pain (as I declined morphine for that). A week after moving her into the new facility and placed in the MC wing, hospice wanted to put her on a very low dosage of something to help her sleep through the night and keep her calm because she was getting up in the middle of the night and falling (I was real worried about putting her on anything like that because I didn't want the facility staff to just be giving her the maximum daily dose and have her heavily sedated just because they didn't want to deal with her). My husband researched it first before I agreed and I kept asking the hospice nurse questions until I was satisfied and comfortable with the answers. Also, I checked on my mom daily - I made sure to get her an apartment by a window so I could see her. It is difficult to do Facetime with her which I did when she was at her previous facility (she didn't have a window there so I used it to keep an "eye" on her as I had no idea what was going on inside and they didn't tell me what bad shape she was in)! After all was said and done, I am actually glad she is not on all those medications - it's a relief. The more you add into the mix, the more side effects there may be to deal with and that makes it harder to pinpoint which medication is causing what. I understand why you feel the way you do - it's because you love her, you want to do everything "right" when it comes to her care and most of all this disease is so cruel as it strips away who they are and were. It is very painful to watch. Please, Clarise be kind and gentle with yourself - you are doing everything you can for her. Also, remember that where medication is concerned, you can see how she does without it and if you feel that strongly about her being on the BP medication, you can always tell hospice you would like her to be put back on it. The hospice doctor said to "consider" it - nothing more, nothing less. The bottom line is we don't want to let go but, it truly is out of our hands! Take care and please update us if you can. :)
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Clarise1 Jul 7, 2020
So sorry to hear about your Mom and glad she is OK- COVID has certainly added another dynamic for all of us caring for our parents. My Moms place just had their first COVID case- suppose it was just a matter of time... sadly. Anyway, thanks for sharing, and I appreciate the kind words.
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I’d just give her the Alzheimer’s meds & any meds for agitation if she has any. Stool softener if needed. My mother is 93 with dementia, incontinent, immobile, but knows my name & that I’m her daughter most of the time...she has a lot of pain from the back & almost everywhere...now it’s always, “Ouch!” ...& I say l, “But I didn’t even touch you yet!” So just do what you can to make her comfortable. BP & cholesterol pills are a joke when there’s dementia/Alzheimer’s! That’s my opinion...but Im not a dr ...only a caregiver/daughter in same situation. Hugs 🤗
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When my Husband went on Hospice we discontinued his Aricept and his cholesterol medication. There did not seem to be any difference. And he was "fine" without them for the next almost, 3 years.
Why not discontinue the medication and see what happens in the next few days or week. If her BP increases you can always restart the medication, if her BP remains in a safe range then there is no problem.
This is a far cry from a Dr Kevorkian where you actively give someone a medication that will cause death.
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We took my dad off all his meds when he began refusing them off and on. Once he was on hospice, he was taken off all except for sublingual morphine for pain management and something they gave him for anxiety. It would depend on if you think controlling her BP makes her more comfortable. Because the main objective of hospice is not to cure disease but to make the patient's final days comfortable. So have a deeper discussion about the BP medication and what will happen if she is off of it. You could even try her off for a trial and then see if she needs to go back on it if it seems to change her comfort level. Her kidney disease is typical for the elderly at this stage and certainly not a factor for using medication. The whole point of hospice is again the comfort of the dying person. Think what she would want. Yes, it's a difficult decision but no decision is final, if that makes sense.
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At some point a lot of meds are more of a placebo for the caregiver than truly effective for the patient.

When I moved my mom from a skilled nursing place to memory care, the doctor wanted to take her off one of her BP meds. She, too, has pretty low BP and always has, so I never understood the need for the medication anyway. However, I didn't go to medical school, so when the doctor says the medication isn't needed, then I was fine with that. Had my dad still been around doing all the caregiving himself, there's no way he'd have gone for it because he was barely holding it together caring for her and probably was afraid it would make it even harder.

Sure enough, they took Mom off the medication, and she's fine. No effect because just as the doctor said, it wasn't having any effect anymore.

Don't be afraid to trust the doctor's advice. At this phase of your mom's life, she doesn't need a bunch of specialists. She needs a geriatrician who'll make her remaining days comfortable.
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Lots of good answers here. Try not to stress about stopping a BP medication as the others have said. There are “targets” that docs aim for for BP and hers may well be just above target. The old school of thought is that elders have higher BP and that is coming back a little. Yes if she is otherwise very fit and healthy you might want to keep it tight but otherwise not necessarily. Any medication has side effects and so if it isn’t really needed let it go. She may have been struggling with taking the pills either with swallowing or just not wanting to take them. I’m a doc in the UK and look after a nursing home. It’s a fairly routine thing to stop unnecessary mediations. Older people can often end up on loads of medications sometimes drugs to deal with the side effects of other drugs! Or drugs that were tried, haven’t produced adequate effect but haven’t been stopped. Or drugs that initially were needed but aren’t any longer. It certainly doesn’t mean we want that person to die! What we want is for them to have a better quality of life while they are still here and hopefully prolong that life as long as they are happy to be here. I think it’s a sign of a good doctor that they are considering whether the benefit of her having the drug actually outweighs the risk of her having it. And if it’s stopped and her BP starts to go up again they can always restart it.
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My 90-yr-old Mom's PCP recently took her off her BP and cholesterol meds. He said there was not much proof that those meds help much for someone Mom's age. Her BP medication was a diuretic and that did not help with her incontinence, for sure. Also, her BP was running so low - usually 100/60 and sometimes as low as 90/60. She now just takes an 81mg aspirin 3 times per week and her meds for cognitive impairment. I don't know if those are working, but I'm afraid to discontinue those meds just in case they ARE working. I think she is continuing to have mini-strokes that are affecting her speech.

I know what you mean about not wanting her to suffer due to the removal of a medication. I worry that Mom is unable to tell me if she is in pain or experiencing unusual symptoms. This care-giving gig sure doesn't get easier.
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Clarise1 Jul 7, 2020
No, caregiving certainly does not get any easier. My Mom has high BP- so I worry about a stroke that isn’t life ending! I can’t imagine her in a worse off state- thanks for sharing. This site has really been a blessing for me for the last nine years.
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My mother insisted my daddy have his cholesterol meds even when he was in EOL Hospice. She was grinding them up and forcing them into him.

It was pointless and as we told her, at this point weren't making one bit of difference to his QOL. She quit.

This was done w/o the drs approval, but I'm sure she'd had concurred.

Talk to the doc. This sounds like a decision you do not want to make. Maybe you will feel better with a dr's word in this.
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Clarise1 Jul 7, 2020
You are right I don’t want to be the one making the decision. If the doc said, ‘hey we are discontinuing the BP meds’ I’d say Ok- similar thing happened with my dog; the vet had to confirm my decision that it was time. Hard to let go...not that discontinuing the pills will result in her passing right away but it feels that way- and then I’d feel even worse- so now I guess I’m being selfish- gah- can’t win arguing with myself- hahaha
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Also, although you may not be in the mood to read a book...I do recommend Being Mortal; as it helps us all with our perspective of death and what our society tries to do to keep us alive regardless. Excellent book for any of us to read.
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