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The latest issue with my mother involves continued problems with her behavior and blood pressure and medication.
She has two guardians now, and they have disagreed on whether to discontinue the blood pressure meds she supposedly started in the fall. I'm unclear as to when she actually started them. The professional guardian feels they should be discontinued because she has an idea that Mom wants no medical care and she tells us "your mother never wanted medical care and fought going to the doctor," which is inaccurate, since I knew my mother and talked with her about her doctor visits pre dementia. But she has had dementia for a very long time now. My brother has wanted to keep her on bp meds to avoid her having a stroke that leaves her worse off.
Would you consider bp medication as palliative care? That is the model they are going with, supposedly.
This is very unpleasant and dragging on. Not at all happy with people who will not follow doctor orders. If you don't like the plan of care, find a doctor you agree with, but have a plan and have medical care in place. Don't just stick her in a room to die.
Or if you want to do that, for the love of God, get her on hospice. They won't do that either.
If a stroke will not kill you (and it might not) but leave you paralyzed with a lower quality of life then I think the BP meds are justified if she will take them. I would not shove them down her throat.
That is my brother's thinking. The pro guardian is arguing with him. I agree with him. But with her in her current state, any meds are like shoving them down her throat, in her mind. She is very resistant and aggressive and they don't even want to take her vitals anymore.
early morning
1-22-22, 10:33am
Oh, Tybee, that's a conundrum, and I am so sorry you have that to deal with. My grandmother had a series of strokes before she passed, each one taking more of her ability to speak and move. I do think your brother has it right as far as it's a quality of life issue, if on the preventative side. I have never understood why so many meds have to come in pill form. Can't they figure out better delivery methods? Flavored small drink, embedded in chocolate, SOMETHING? If you can get vitamin gummies, and pot gummies, why can't they make blood pressure gummies?? I am SO thankful my mother's dementia left her rude and sarcastic (and funny as hell) but not aggressive. Her sister, in her early phases of Alzheimer's, chased staff out of her room with whatever came to hand. She had a good arm and good aim. It was pretty difficult to get her care for a while. Thinking of you....
so sorry Tybee. I understand how tough this is. My mom is still on a blood thinner (because of past strokes) and I wonder if we should renew it. She also has a pacemaker, and at some point in the next few years we'll have to decide whether to replace the batteries. She is sad all the time, and takes no joy in anything any longer and just complains about the assisted living even though there are now regular meals and company and activities that she didn't have at home. She was always a Debbie Downer, but this has gotten worse with the death of my dad 2 years ago (he spent hours each day cheering her up) and her increasing dementia. Because she can't remember, she's convinced we've all abandoned her- even though she gets visits at least twice and sometimes more each week. Its a horrible way to live, as a prisoner of your own mind.
happystuff
1-22-22, 11:42am
I'm so sorry, Tybee. I have no advice to offer, as others have more experience with this. Sending prayers and positive thoughts that all will eventually go well.
iris lilies
1-22-22, 11:43am
These are tough decisions Tybee that’s for sure. How would her daily care change if she was under hospice care?
Oh, Tybee, that's a conundrum, and I am so sorry you have that to deal with. My grandmother had a series of strokes before she passed, each one taking more of her ability to speak and move. I do think your brother has it right as far as it's a quality of life issue, if on the preventative side. I have never understood why so many meds have to come in pill form. Can't they figure out better delivery methods? Flavored small drink, embedded in chocolate, SOMETHING? If you can get vitamin gummies, and pot gummies, why can't they make blood pressure gummies?? I am SO thankful my mother's dementia left her rude and sarcastic (and funny as hell) but not aggressive. Her sister, in her early phases of Alzheimer's, chased staff out of her room with whatever came to hand. She had a good arm and good aim. It was pretty difficult to get her care for a while. Thinking of you....
Those are great ideas about the delivery system. My mom is acting more like your aunt.
so sorry Tybee. I understand how tough this is. My mom is still on a blood thinner (because of past strokes) and I wonder if we should renew it. She also has a pacemaker, and at some point in the next few years we'll have to decide whether to replace the batteries. She is sad all the time, and takes no joy in anything any longer and just complains about the assisted living even though there are now regular meals and company and activities that she didn't have at home. She was always a Debbie Downer, but this has gotten worse with the death of my dad 2 years ago (he spent hours each day cheering her up) and her increasing dementia. Because she can't remember, she's convinced we've all abandoned her- even though she gets visits at least twice and sometimes more each week. Its a horrible way to live, as a prisoner of your own mind.
That is so hard, about the pacemaker. I am glad we are not up against that. Otherwise, the situation is similar, although my mom is farther gone with respect to language, etc, which is new since summer. I see much deterioration each time I visit.
I'm so sorry, Tybee. I have no advice to offer, as others have more experience with this. Sending prayers and positive thoughts that all will eventually go well.
thank you, really appreciate the prayers! I feel like that is actually the one thing helping right now.
These are tough decisions Tybee that’s for sure. How would her daily care change if she was under hospice care?
She would be having more visits from nurses, be visited by a chaplain, would probably discontinue only the bp meds--the rest are psychiatric meds. I was thinking there would be more medical care, more eyes on her. The family would get help with some recognition that she is dying. The pro guardian would not be the one determining what medicines she gets. That is making me nuts, it's like she is practicing medicine without a license.
She would be recognized as a spiritual being, with spiritual needs. Her life would be considered meaningful. When I said last week I wanted her remaining life to be as meaningful to her as possible, my older brother said she would never have a meaningful life again.
That is a philosophical difference and I feel she has been abandoned by her guardians and conservators. That she has become a nuisance and only her money has meaning at this point.
More eyes on her, more visitors, more recognition that she has value, that her life has value, even now?
Seeing my own MIL in a similar predicament (assisted living and on multiple pharmaceuticals), I continue to be amazed at how long they "hang on" even though they are miserable. All one can do is remember that "this too shall pass" though it seems endless when you are in the middle of it. I hope that you and your Mom find peace in the not too distant future.
When my mother went on home hospice care during her end stage dementia it was a blessing to her caregiver, my youngest brother. She received 3 weekly visits by an aide to assist with bathing and other personal care, 3 weekly visits by an RN who also brought along a lockbox filled with any medications she may need at any given time and twice weekly visits by a chaplin.
My only disappointment with that setup was that it wasn't the hospice care personnel who recognized her imminent passing, it was my niece, an ICU RN who came for a visit and immediately called each of us and advised that our mother was days away from death. And she was right, my mother died 2 days later. Luckily my niece stayed with her during those few final days and supervised her transition, for that I'll be forever grateful.
When my mother went on home hospice care during her end stage dementia it was a blessing to her caregiver, my youngest brother. She received 3 weekly visits by an aide to assist with bathing and other personal care, 3 weekly visits by an RN who also brought along a lockbox filled with any medications she may need at any given time and twice weekly visits by a chaplin.
My only disappointment with that setup was that it wasn't the hospice care personnel who recognized her imminent passing, it was my niece, an ICU RN who came for a visit and immediately called each of us and advised that our mother was days away from death. And she was right, my mother died 2 days later. Luckily my niece stayed with her during those few final days and supervised her transition, for that I'll be forever grateful.
How good that your niece was there and recognized the signs. How good that she could tell you and you could get in there with her, and that she did not leave your mother.
Teacher Terry
1-22-22, 1:44pm
I wouldn’t change the batteries in the pacemaker. Dementia makes people paranoid and miserable. A nurse told me that they discontinue most medications because they are mostly worried about falls. How’s with HBP I would worry about being worse off than before if you can get her to take them.
I wouldn’t change the batteries in the pacemaker. Dementia makes people paranoid and miserable. A nurse told me that they discontinue most medications because they are mostly worried about falls. How’s with HBP I would worry about being worse off than before if you can get her to take them.
Her regime is not up to me, and I have no standing to do anything medically.
rosarugosa
1-22-22, 5:54pm
I wouldn’t change the batteries in the pacemaker. Dementia makes people paranoid and miserable. A nurse told me that they discontinue most medications because they are mostly worried about falls. How’s with HBP I would worry about being worse off than before if you can get her to take them.
I just wish my Mom needed batteries that we could decline to replace. I know that sounds awful, but I actually love her very much and I would like nothing better than to see her pass with a bit of dignity. Sure, there is a selfish element there too, but it's what she wants more than anything, so I don't feel any guilt or conflict.
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