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?
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.
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. :)
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.
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.
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.
I am so sorry for the grief and pain and loss you are living these years of being witness to your Mom's suffering. My heart goes out to you.
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