I would like some opinions about a decision I just reversed. Advice?

It looks like the rest of your post was lost, Boni -- but so far, it sounds like the four of you have come to a very sound and informed decision.

Sorry, accidentally hit submit.

Anyway, during that episode, while I was holding her, until it passed enough so I could grab the chair, Mom could not speak! It lasted about 30 seconds or so and scared the bejeebus out of me. And her too, I should add.

I spent hours last night, online studying strokes, as well refreshing my brain on vascular dementia. I didn't sleep very well. (duh)

This morning,the phone rang as I was pouring my first cup, and it was one of Moms 3 friends left alive, calling to let me and Mom know that one of the others suffered a massive stroke last night and died. She's down to two.

I took this as a kick in the ass from God and scheduled the artery test for Monday. I discussed it with my bro, the GP and Heart DR. and they all agree, the test should be done and we can reevaluate her risks for surgery, if indicated.

I think what's bothering me most is, If she IS going to have a stroke, I WANT it to kill her. I'm sure most all of you know what I mean and get it.

So my question is........not really a question. I would just like opinions and support from the smartest, most compassionate people I know. My AC friends. Thanks in advance. Boni

Well, what you all decided before this episode was to give her palliative care. A good decision, depending upon her age (which is?) and her general health condition which apparently is not great.

Mom is on palliative care, and I have no intention of reversing that decision. She's 87, has had congestive heart failure for ten-plus years, and her kidneys have been damaged by the diuretics she's taken for years. Her quality of life is pretty dismal. Can't walk alone, etc.

During a recent hospitalization for fluid retention, they wanted to drain her lungs. I refused that treatment. They handled it with medication; and she's stable again.

When I first brought mom to my home to live, a year ago, I pulled her back from the brink by ignoring doctor's orders and cutting down on her diuretics. What did I pull her back TO??

A few months later, she bumped her leg on her walker, a light bump, but bruised horribly. The hematoma created killed all the skin above it creating an open sore that was 2" wide by 5" long. It was terribly painful. Had to be dressed twice a day for two months waiting for it to stabilize for a skin graft. Then skin graft surgery and a very painful graft site for another month or so.

Three months after THAT, she fell and broke her hip. Had hip surgery and 2-1/2 months of rehabilitation . . . very painful for the first month. Lost more cognitive ability from the surgery; lost more strength. And right now, she can barely walk even with a gait belt and walker.

She nightmares every night, calling for her dead mom, dad, sisters and brothers. Has very limited short-term memory. Yada yada yada.

What I can tell you, my friend, is that none of the things that happened to my mom required any kind of major decision on my part. When one of those major decisions raises its head in my house, I'll stick with my original plan.

I'm not looking for trouble. No tests. There comes a time when we have to accept that our loved one is going to die . . . of something.

Mom just turned 80, and she has many MANY issues. But her diabetes numbers and heart numbers have come in perfect for a year now. Both Dr.s are always giving me Kudos for bringing her so far with the RIGHT meds, and the nutritional eating, and loads of TLC. We have NOT made a decision about surgery yet, just about getting the test. It's a Doppler, so not painful. The thing is, she DOES have a good quality of life. She can still and loves to read. She isn't in pain or bedridden. She gets out once or twice a week. She IS very frustrated with her dementia and her dependence on the wheelchair, but we pray every morning to accept the things we can not change. Basically she's happy and content.
My and her biggest fear is that she will have a stroke that does NOT kill her. We have seen it and it's not pretty.

My mom has had 2 TIA's since she and dad moved in a year ago, he has ALZ/diabetes. She is frail but sharp as a tack and a retired RN. SHe is a strict DNR, and when she ended up in the hospital before we moved them here she was adimate that she wanted nothing invasive done but IVs and such. The TIAs were very scarey, but she did not want 911 called, and as she perked out them in a few minutes we respected her wishes. She IS aware that if it gets longer we WILL call 911, but still respect her DNR. She also has a stent in one carotid. She always says 'just let me lay" but she knows thats not gonna happen! I joke that Dad wont know what to do.. he'll just step over her and take a nap.. so we keep the CG that is here during the day when we work!!

Gosh, Boni. I understand your dilemma. From your profile your mum seems to be in pretty bad health - diabetes, COPD etc. All I can do is share some thoughts.

You want to spare her unnecessary suffering from procedures which will not benefit her quality of life, but could possibly extend her length of life.

I am not following your interpretation of the phone call about the friend who had a massive stroke and died. You say you took this as a kick in the ass by God, and scheduled procedures which are aimed at preventing a stroke that could kill her, or, could disable her further. I understand perfectly when you say you would want a stroke to kill her. There are many worse ways to die and COPD is one of them. You could have taken it as a sign from God that you made the right decision, and that a stroke could take your mum. On the other hand, as a stroke may not kill her and may reduce her quality and length of life. you are now feeling you want to take steps to prevent/treat it if possible.

So you have a conflict. Dear one, there are some things we have no control over. You have no control over whether or not your mum will have a stroke, and if she does, whether or not it will take her. It is a guessing game at best. I think that Maggie has brought up the core issue which is - do you want your mum to have palliative care, or more than that?

At my last visit at the hospital where mother is, the level of care I and her first psychiatrist there had chosen was just above palliative. If she gets pneumonia give her an antibiotic, but no more measures that that. Do not move her to another facility for more treatment. The second psychiatrist glared at me during our last meeting and stated her belief that the level of care should be upgraded one level, and gave me a reasonable example of where that would be wise. If, for example, she broke a leg, she may need to be taken to another facility. I felt and still feel that mother does not want much more than palliative care; however, I went along with it. The level can be changed anytime, and I did not need more battles at that point.

Boni, what do you think your mum would want? Has she expressed any opinions on this in the past? Are you just wanting information or are you wanting the test so as to proceed with surgery if indicated? When I was pregnant with the youngest, my Gordie, the doc asked if I wanted amniocentesis. As I was an older mother. I agreed to it. Then later I realised no matter what the outcome of the test was, I could never abort a child, unless possibly, my own life was in danger. I went ahead with the test - hubby wanted the info - and all turned out well. In retrospect, had I thought it through, I may not have done the test. There is a risk to procedures.

My heart goes out to you. Prayers for wisdom in these difficult decisions.

Maggie - my heart goes out to you, too. What indeed did you pull her back to. I am sorry for her suffering. My mother, who is 102, is, perhaps, unfortunately, very well physically, but quite unwell mentally and getting worse. I have taken the position that she should be given the treatment that will help her current quality of life, even if it shortens her life. She really does not want to be here any more. As she has said it many times. Old age is not for sissies.

Ah, we cross posted. The extra info abut your mother's quality of life makes a difference. She is not that old by my standards. lol I do think information can be helpful. You may have to go on a tiered basis, and not make a blanket decision about "no tests". Some tests are invasive and the results could lead to surgery beyond her ability to cope. Perhaps those should be avoided. Some tests and even procedures are not that invasive and could be left as a possibility. Some tests alone could give you useful information. Definitely Kudos for the great care you are giving your mother and how she has flourished while being with you. I agree, that a stroke that does not kill you is not pretty. But, then, most ways of dying are not pretty. (((((hugs))))

Oh emjo, you so get me. My second thought on the kick from God kicked in just a few minutes before I read your post.
Moms physical health has improved but she is declining mentally, pretty much daily. I have been back and forth with this all day.
Maybe I should stop guessing about God, and just leave it in his hands.
Pamz, Maggie (my grand daughters name) Loo.....Thank you for your input and wisdom. I have 2 hours left before Mom gets home from Sisters, and I think I'm going to do something fun for me, and come back to this tomorrow. Thanks Y'all

Boni, I'm so sorry to learn of the anguish you're suffering over these decisions.

As to the friend, you know that there really is no correlation between her death and your mother's health. In the older years, it's just not that unusual for people to die.

I do understand your position about a fatal stroke, but I wonder if your mother's doctors feel this is a likely possibility?

It seems as though part of the dilemma, if I understand correctly, is whether to continue with noninvasive testing to identify, treat and hopefully control issues that may be discovered, but on the other hand, some of those issues could be fatal and spare your mother from further suffering.

I don't know that there really is any answer that will bring you peace or comfort. This is a hard stage of caring, an unsettling place to be in to make decisions and second guess them.

As I've written before, my father is 95, and still pretty spray despite 2 broken hip surgeries. One of his friends took the position that we shouldn't be going to a lot of doctors, that I should just let things happen. Besides being none of his business, I thought that was kind of like some of the indigenous people who go out onto the ice to do when they think it's their time. Perhaps they have some intuition, perhaps they just go because of their age.

I'm not criticizing that ethnic practice, but they could have several years of good life left.

I like to err on the positive side.

Had my sister not intervened in 2000, my father would have died then; he clearly was on death's doorstep. I don't regret any actions I've taken and would continue to take them unless specifically advised that they would result in a fatality.

So if in your place, I would continue with the noninvasive testing, until and/or unless one of the physicians determines that there is no hope of treating and that hospice is appropriate.

I definitely would not put her through the discomfort of invasive procedures.

I wish there was some way we could predict what would happen, such as a minor or massive stroke, but unfortunately life is so uncertain. And as someone always says, any one of us could die in a car accident or being hit by lightning, or some freak accident.

So I say live life to its fullest and let your mother do the same.

But I would also ask that tonight you do something for yourself, whether it's getting a big slurpy hot fudge sundae, or putting on some nice fragrant lotion, or just doing nothing. Maybe read a good book. Just do something to create some space between your dilemma and your decision making capacity so that you can get a good night's rest and revisit the issue tomorrow when you feel refreshed.

I feel for your anguish, if I was in your shoes, I would stop the testing. Surgeries with anesthesia are very concerning for the elderly particularly with dementia...it would. You are making your decisions with love, I know you will do whatever is best.

BoniClark, I fully understand that there should be a time when certain tests shouldn't be a requirement for the elderly. Case in point, my Mom is 96 and she still get mammograms.... Mom is frail so it takes 2 technicians to help her and it is very painful to have this done.... I keep thinking WHY as if on the faint chance something is found no surgeon will touch her at that age, and she wouldn't survive chemo. Her GYN says my Mom insist on having the mammogram done, apparently for her own peace of mind.

Last week Mom's oncologist said there is no reason for her to keep coming year after year. After 15 years if her blood work hasn't changed, it's not going to change any time soon. Have her primary doctor do the blood work. Mom couldn't understand why she wasn't given an appointment for next year.

Boni, it sounds like your mom is still a fighter and still enjoys life. Go with your guts. You know the situation with mom and what is good for her or not. And if she does get a stroke that she can never recover from, then she's moving to the next stage - like Maggie said - palliative care. Surgery is going to be very iffy. It's just not because of her stamina but that anesthesia seems to drastically worsen an older person's dementia or senility.

And it's not easy. In all these years of being secondary caregiver for mom, she had a DNR. But dad refused to do it. So, several times, mom came back from death's door. One time, they had to resuscitate her for about 15 minutes. So, when dad got his stroke, and I became the unspoken main caregiver - not legally by the medical or legal community - I dug up mom's original DNR. Made several copies and decided that I would Honor it. And I did. But, I'm telling you now, there is such great turmoil emotionally and intellectually when you decide to do this. A lot of second guessing. In the end, I'm so glad that all my siblings agreed with me. So, it made it easier when mom was dying. No ER trip. I still felt such guilt after she died. But in my heart, I already knew that it was mom's time to rest in peace. {{{HUGS}}}

You are doing the loving compassionate thing. We can't stop death. At some point we must transition from cure to care. I think you are doing the right thing. No more tests, no more treatment, beauty, laughter, and chocolate are the answer. Everything that enhances life, nothing that increases it. My heart goes out to you. I feel you are very courageous.

Boni I agree with Emjo that 80 is not that old as we both see it not so far ahead. her mother is still alive at 102 and mine died at 69.
The TLC you give your Mom is the most important part of her care.
She probably has and continues to have TIAs or mini strokes and the latest episode well illustrates that. These episodes can progress to a full blown stroke or if they resolve within 24 hours considered a TIA. Of course in a younger person with no previous history they should be investigated and agressive treatment offered.
A Dopler scan is non invasive, not painful and takes only a few minutes as you probably know. So go ahead if you want to frighten everyone with the results. Putting in another stent of course caries it's own risks and only opens up a very small part of that particular blood vessel and is not something that is necesarily more sucessful than the proper medications for long term results. If Mom wants it after her scare by all means go ahead but otherwise take her out for coffee and an unhealthy donut on Monday, she will enjoy that a lot more.
As far as having a stroke that actually kills her you have no control over that unless you put a pillow over her face while she is passed out.
God was definitely telling you something. He was preparing you that things are going to change, how and when only He knows. You and Mom are both His children and He will care for you in his own way. Follow Mom's wishes don't second guess her. She loves and trusts you.

Boni I hear ya..Putting someone you love life's in your hands is exhausting! I am constantly second guessing my decisions.

Stick with your Bro and together you can help ease the guilt of the decisions you have to make.. It always comes down to guilt!!