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 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.
Had to pick up meds. One was BP... I was concerned since we don't have medical going over to her every so often. She bruises easily, and if her skin breaks, it doesn't heal too quickly.. Main concern... should she be on BP meds?
Pharmacist said it was low dosage, not to worry.
She will be 89 soon.. saw her today. She was asleep, and they said.. no let her relax.. Don't wake her. She was very peaceful.. What else can you ask for/?
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.
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.
She recognizes you. :) I feel sometimes they come in and out of memory. Sometimes you know she knows you, and sometimes, it is just a look, like..Why am I still here? // :(
WE love them the same and it hurts. And it's their beginning of their end of life.
It is going to happen to all of us. Knowing that, it hurts, and it's scary, and nothing can really prepare you for that. It's hard to go through it, but know everyday, it will be little bit easier. It can take a lot of time. Please DO NOT FEEL GUILTY.. THAT IS THE MAIN TRICK TO HELP HEALTH A LOSS OF A LOVED ONE
If doctor agrees that trying this might be okay, perhaps have her BP checked daily, around the same time of day and if they see any "spike" in her numbers, the medication can be restarted. Like you, I would worry about any negative aspects of discontinuing medication(s). Certainly some can be stopped without major issue (like cholesterol meds) and is likely best for anyone that far down the dementia path, but esp for someone with kidney issues. Medications can be detrimental to the kidneys, so we need to be aware of that!
As for medication to help her sleep - they used the lowest dose of Lorazepam (anti-anxiety) during mom's transition to MC. We used it again when she had her first UTI at the MC facility, as she was sun-downing BIG time! It was only used once/day and only while the UTI was treated. I wanted to keep this "on hand" in case it was needed. The doctor, however rescinded the order as she considered it a fall risk. At that time mom was still mobile, no walker or other assistance needed. Given that the only tumbles she had were NOT when she was taking this medication AND that her state while sun-downing was more dangerous than any fall risk, I was angry with this doc. I did finally make my point and it was restored to "as needed" only, and we didn't really need it as the next UTIs showed up as night time bed wetting.
The minimal dose might be enough to help mom stay asleep overnight. It can't really hurt to try this. Her rest and avoiding falls at night might outweigh any minor adverse effect. One way to ensure it isn't being "over-used" to keep mom doped up is to monitor the usage. Fortunately they have allowed me to be the medication "manager" (I order/pick up/supply the meds), as her plan is MUCH less expensive than those places that provide the facility "blister" packs. So, I would KNOW how much they were using!
Perhaps try these methods separately, so it will be clear that any side-effect or repercussions can be identified. For instance, start the sleep aid, and monitor BP and other aspects (does it really help - if not after a given time, discontinue and maybe try something else.) If all is well, she stays asleep and BP isn't affected, then try eliminating (or at least reducing) the BP meds, but continue monitoring. If all goes well, then be done with (or consider reducing further) the BP meds.
I will say I am not a big fan of many medications - certainly some are needed to control conditions and make life better, but keep them to a minimum! I do know that when mom was still living in her condo, but forgetting to take her BP meds, her BP had rocketed at a checkup she had at that time. Generally even on the meds her BP was, to me, on the higher side, but again, they say now that elders may naturally be higher. Also the Lorazepam was easy to monitor as it worked the first time every time (about 15-20 minutes, no weaning needed and it didn't dope her up - it was just enough to take the "edge" off for her.)
If there are "natural" alternatives, I will choose those every time! Exercise and dietary adjustments were enough to avoid cholesterol meds for me. I absolutely refuse to take those osteoporosis meds - researched them and said nope, I'll take my chances without them! Currently I take 2 aspirin (lower spine issue) and 2 vit D3 most days (miss a dose here and there, but they are not life-critical) and that's it. I hope to keep it that way!
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. :)
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.
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 was however very POed when the doc in the nursing home discontinued the final medication she had been on for decades (propranolol) without discussing it with me first - her previous doctor had chosen to keep her on it as a quality of life issue, even though at that point her BP was trending too low the med had helped with her essential tremor, chronic headaches as well as heart arrhythmia.
"Dr. K" was spot on and at least had the guts to tell you his professional opinion. Your mom will NEVER get better. She will only continue to get worse. Dr K can keep her comfortable till the end, but why keep forcing her to live this horrible life she is living? You'd be doing her a favor by listening to Dr. K, holding her hand, telling her how much you love her and release her from her constraints here on Earth. Afterwards, you WILL know you done the right thing, and she will be in a better place. Good luck❤
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.