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That doesn't include anything that makes me feel better, such as pain meds. I do take two blood pressure meds plus a statin. I also take dicyclomine for left lower quadrant pain. I am gluten sensitive and developed the LLQ pain after a colonoscopy that diagnosed microcolitis. The dicyclomine prevents muscular spasms, which are probably what caused the LLQ pain.


My ex-husband is in nursing home with Lewy Body dementia, and the wear and tear on our two children--especially my daughter--is painful to see. His money won't last much longer than 2 more years and he will have to go to Medicaid approved home then. I don't want to use up all my resources for a memory care place and leave nothing to my kids. I feel that society keeps us old folks--who used to die from heart attacks or cancer--alive for much too long, and I want out before I lose my mind.

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Arleeda,
Re-reading your post today. I understand, I think, most of what you said. However, there could be many versions of why (what would be your goal?) in stopping all your medications.
1) ? An early death, hoped for by refusing treatment?
2) A terminal illness in which you will likely die (soon) and your plan would be "palliative care" only?? (Palliative care keeping you comfortable with pain meds).
3) The desire to help yourself and your memory by taking less medications, have a medication review?
4) The possibility that stopping meds such as dicyclomine may reduce the possibility of confusion, hallucinations?
5) The desire to try a different approach to alternative health care?

So, those were my thoughts, wondering what it is you are wanting, concerning your own health. I did not want to assume.

Looking up the Alzheimer's gene, I found:
["Salk scientists identify that the enzyme HtrA1 (pictured) degrades ApoE4, the strongest genetic risk factor for Alzheimer's disease, providing new information that might eventually lead to new treatments for the neurodegenerative disorder. Credit: Salk Institute
For decades, scientists have known that people with two copies of a gene called apolipoprotein E4 (ApoE4) are much more likely to have Alzheimer's disease at age 65 than the rest of the population. Now, researchers at the Salk Institute have identified a connection between ApoE4 and protein build-up associated with Alzheimer's that provides a possible biochemical explanation for how extra ApoE4 causes the disease."]
Do you actually have a diagnosis of Alzheimer's disease?
Did I miss something you said that indicated you have a terminal illness?

I agree that society keeps people alive too long, with results being a very poor
quality of life.

You have mentioned some very real concerns about your family, inheritance, money, exhusband's health and future care, and your own health, your memory, and sanity. You are making sense to me, and if you can remember where you left this post, your memory has not failed you.

Please come back and allow others to help you by listening, hearing you vent, supporting you, giving perspectives from their own experiences, and finding out what you need. For example, perish the thought, that you might stop your meds all at once, making yourself very sick.

P.S. I am losing my memory too.
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Arleeda Nov 18, 2018
Thank you this is very helpful. I actually have a PhD in microbiology and in my youth had an almost photographic memory--never had to study to get straight A's. Now some mornings I wake up and am not sure what day it is or sometimes where I am. I don't have a terminal illness, but I do have microcolitis and gluten sensitivity. I am trying to omit gluten but it doesn't always correct the problem of early a.m. diarrhea. Right now I titrate the amount of Imodium I take by the quality of my stools and worry that if I lose my memory I will no longer be able to do that and will be put in diapers somewhere.
My second husband, who was four years younger than I, had vascular dementia (occasional delusions, loss of executive function, stumbling and slowed gait). He could remember people (but not directions or if he had paid the bills). He died of a major stroke 5 years ago and I consider him fortunate--both of us had/have DNR and no gastric feeding tube directives in place. I sold the house and moved back to the city where the two children from my first marriage live, only to have my daughter wrapped up in her father's care and mad because my son rarely comes to visit him. She is an unmarried RN who works nights at a psych hospital for teens and has no family; he has a demanding job, a wife recovering from hip surgery, and two daughters--one with type 1 diabetes, who is in community college and has just moved out to her own apartment, the other in 8th grade. I no longer have any close friends in this city as I had been gone for 24 years. I still drive, but wonder if I should as I keep running into curbs and other inanimate objects! I live in an older apartment building that caters primarily to retirees. So, yes, I am depressed but not sure if I need medication for that. Maybe. I have scheduled an appointment with my internist and see if he recommends psych care for me.
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First Children should not EXPECT go get an inheritance. If there is one great..if not that just means you planned properly and were able to pay for your care the best you could.
Talk to your children about what you want.
One of the things you should to is get all your "paperwork" in order. Will, POA, P.O.L.S.T (more detailed than a DNR) and that will dictate what and how much you want done for you (feeding tube, ventilator..) Decide when you want Hospice called in. Pre arrange all your funeral plans.
After discussing with your children and your doctors if you decide that you no longer want to take medications that is your decision. As long as you are of sound mind when you make these decisions and arrangements they are legal.
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Have you spoken with your children about this, Arleeda? I’m sure they would want you to get all the care you need even if it meant they had no inheritance. This is what happened to me. My mom had $30,000 saved up for me to inherit and it all went for Memory Care self-pay. I survived without her money. It was more important to me that she got good care and was safe.

And yes, Life is not fair, especially to us Seniors. For us to get any Government assistance, we have to be living under an overpass in a cardboard box. But you know what? We made it this far. We didn’t get to be Seniors by accident. We survived wars, terrorist attacks, personal tragedies, and God knows what else. Why give up now?
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Arleeda, I'm so sorry for what you're going through with your ex-husband's illness. I also carry the APOE4 gene and while I'm only 49, it devastated me when I found out about it.

However, as Sendhelp points out, your post is well-written and betrays no hint of any cognitive decline right now. And APOE4 is not a death sentence.

I have found a lot of reason for hope in the work of Dale Bredesen, MD. His latest book is "The End of Alzheimer's" and I would imagine most public libraries have it. I just finished it and recommend it highly. You can look him up on YouTube as well; he has done a lot of interviews, both highly technical and more for the layperson.

Dr. Bredesen is developing solid data on preventing and reversing cognitive decline (in the beginning stages) with a protocol addressing the different sub-types of Alzheimer's he and other researchers have identified. He's the real deal.

Another great reference is apoe4.info.

So, don't assume all is lost. Of course there are real risks, and things we all should prepare for. But there is also hope.
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Arleeda Nov 18, 2018
Thanks so much! My cholesterol even with statins, is over 200--who knows what it is without, but I believe I will find out. I will also check out the references you provided. Thanks again--A
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Arleeda, is there a Palliative Care group available to you? I don't have any problem with anything you have said but it might be good for you to be screened for depression as well as discuss just having comfort care going forward. I think a good palliative care professional would review all your meds, get you a psych consult and in general make your life as healthy and comfortable as it can be.

In some parts of the country, they only offer hospice in palliative care. If that's the case where you are, consider going to a geriatrician. It seems to me that they are more open to medication reviews and alternate treatments to pharmaceutical ones. Life's a balance between planning for the future and living today. Sounds to me like you are a little too heavy on the future planning/ worrying.
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Arleeda, I think you should talk this through with your doctor. Don't forget, he can't force you to accept any treatment you don't want; but in the interests of fairness as well optimal medical care it is only sensible to tell him what you're thinking and how you're reaching your decisions.

So, it's essentially the bp meds and the statins you want to drop? The trouble with thinking "I'd rather drop dead of a heart attack" is... what if it doesn't kill you? What if Fate, being an absolute b***h, hands you a disabling stroke instead?

Do you mind if I ask how physically active you're able to be?
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Arleeda Nov 19, 2018
I am currently very physically active, I go to the YMCA twice a week for yoga and weight training and also use the treadmill in my apartment house twice a week. I used to do line dancing but now I can't remember the steps. I recently returned from a group trip to Mexico with Road Scholar and kept up with the 3-5 mile a day walking and even climbed 200+ steps in pyramid of the moon using hand rails. I also play duplicate bridge, but there have been two women in the bridge club who can still play bridge despite Alzheimer's diagnosis, they just can't find their way home or draw a clock! I can still pass the mini-cognition test. My second husband died of stroke because he could not swallow and we didn't put in a feeding tube, and I think it was a relatively easy way to go. My pscyh RN daughter says there is only a short window between the time you get a dementia diagnosis and the time you don't care anymore.
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I wonder.

When you add together: a profit-oriented health care system, a conscientious, intelligent and educated patient, and a sympathetic eager-to-please GP... Aren't you pretty much bound to end up with an awful lot of over-investigation and an awful lot of over-treatment?

Arleeda, have you heard the expression "the Worried Well"?

How high was that BP when you got the px for it?
How high was your LDL when you were told to start taking statins?

You are 81 years old. You are racing round the place as most people half your age can't do. You are articulate, you are educated, you are online, and you are well-connected with real people too. So, really, your chief problem is fear of possibilities which seem remoter for you than they are for the great majority.

I wonder if you shouldn't tell your doctor that from here on he is only to fix things that are proven not to be working, and he is to stop going out looking for trouble.
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Sendhelp Nov 20, 2018
CM, You expressed that so much better than I could.
Yes, "Worried well".
Not easy to accept that.
However, with all the OP is able to do, bless her heart!
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Arleeda--

Your post hit me hard this am...you sound amazing and so in tune with your body, your life and all the surrounding "bits" of life.

I wish my mother were near so aware!

You have the right to do as you chose. I personally, fear, not dying, but the great loss of dignity that slow death brings. My sweet father lived many years past having ANY joy in his life. He BEGGED me several times to OD him on his pain meds.....and I didn't do it. I couldn't.

Right as he lay actively dying in Hospice Care my mother was crushing up his Lipitor and forcing him to take it. I found out about that and lost it on her.....she didn't "get it"...

Only you can make this decision. I know how much I fear being a burden to my kids. I know how hard it is to have to care for an elderly parent who feels they ARE a burden.

Don't make any hasty decisions--doesn't sound as if you are. You're thinking this through very well.

Palliative care, if you decide to go off all meds would be a choice. It's good for you that you can make the decisions now, before you won't be able.

And I'm in the "ditch the cholesterol meds" camp. I just went off mine after a heart scan showed no signs of occlusions. My DH had 2 massive heart attacks last summer and his cholesterol was 150. Mine's over 200 WITH 3 meds on board.

I hope you have a lovely Thanksgiving.
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As said, pain killers can effect the memory. At 81 do you still feel you need statins? They have been linked to Dementia. I have talked to two doctors. One said never take anything to lower cholesterol. The brain needs it to function properly. Another gave me alternatives. Neither said I was wrong in turning down a statin. It has been said on this forum that some see a slight change in a LOs cognitive ability when taken off. My Mom was taken off because her liver enzymes were too high.
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Arleeda,
Check the side effects of taking Immodium with colitis and in the elderly. Red flag. And be sure to replace your electrolytes and drink water-you may be dehydrated.

Better yet, stop the immodium immediately, and return to your gastroenterologist.
Even pick a new one, as the problems with LLQ pain started after a test. oh my.

Expect to feel better soon. As for driving, stop driving until this clears up for you.
And it can, it likely will. Use Uber, a friend to drive you. One cannot be driving over curbs and inanimate objects. Stop before you are prevented from driving. Always retain the hope that you can return to driving.

Are you at all compromised with your breathing? COPD, or in an area with poor air quality? Get checked out.

Let us know what helps you.
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