So sorry @esobay you are going through this. Last fall my mother had Alzheimers and died suddenly of sepsis in 24 hours. She was lucky. We did no heroics. She said she wanted to die in her sleep- it was close. Only thing through the years that helped me is knowing that they generally do not suffer. It is the family that does as they see the personality slip away. In knowing that I was able to understand it was me, not her, that had to deal with the disease and somehow that was comforting to know that she was not suffering.
I’m sorry, too, @esobay. Alzheimer’s disease is devastating.
Just a rhetorical question–at what point does it make sense to stop testing? If you see docs and don’t take the med’s they prescribe not follow their recommendations yet you continue to want to go back and get additional testing.
We are going thru this with my folks who are 87 and 92. The cardiologist wants to do another echo. Dad didn’t do anything or take the any of the meds the cardiologist prescribed a year ago, not clear what another test will do. Ah well, I’m not taking him for that test or back to the cardiologist (whose dad I personally despise)–I will let other family members step up for that role.
We take him to the lung doc and a speech therapist for his coughing and sleeping and breathing problems. Lots of appointments to go around! He didn’t use the CPAP for many months but now is finally using it again!
@HImom - this is one of the most critical things I have faced as a daughter, PoA and health care proxy. We have two early 90s aged elders and hospice was recommended for both this week. I have been highly selective about testing for my father for a couple of years. If no treatment is to be pursued secondary to test results, there seems to be medical consensus that the tests should not be performed.
IIRC , your parents live independently. Living independently without the will or ability to follow through on medical recommendations is a conundrum. I wouldn’t procure tests unless I was prepared to ensure follow-up on results via supervision of some sort. Both of our frail elders would not have signed up for their current situations ( 92+, both unable to stand, ambulate, swallow without challenges, intermittent cognitive issues in one, dementia in the other, one has maintained weight, one has lost lots of weight in the last 8 months). We are opting out of testing, interventions, etc. To figure out where their internal bleeding originates would take a colonoscopy+ in both cases. Uh, that would be elder abuse in my book, given their clinical status. I think it is a highly individual answer, especially if medical status is ambiguous. I know the train is only going to one station at this point and stopping along the way to be depleted by appointments or procedures is not on the itinerary. It is graceful exit time, in case saying that helps…
The cost benefit analysis shifts over time. My mother died of cancer 11 years ago: it was more clearcut to know how to proceed. I just see what simple things take out of my MIL and F and know that no more can be asked of these failing bodies. This is a real YMMV situation. Both of our elders are in SNF now. We have professional eyes, frequent consultations and lots of help with decisions via regular care plan meetings. Otherwise, info can be procured with designated reps speaking with cardiologist, etc. Whatever is going on, it is important that it be clear to all relevant family members and comfortable for the “responsible” designees. Doing what needs to be done to ensure this is worthwhile. All the best to you and your family.
It’s very hard to have consensus. My sibs all want to do what dad says he wants, which dad has repeatedly stated is EVERYTHING possible. He is unable and/or unwilling to follow through on any of the doctor’s recommendations. I am willing and able to take him to the lung doc because I see that as a comfort and safety issue, especially with breathing and coughing and CPAP for sleep. I personally do not see that the cardiologist adds anything, but since my sibs are fine with taking him and he goes I let them do their thing.
My mom also is not good about following up with anything recommended by any of the doctors. She never remembers to take any of her medications and has always been resistant to taking them. My parents do continue to live independently but their short term memory is very unreliable.
My dad insists that my older brother has power of attorney and medical power of attorney, but so far, bro has not taken a role in stepping up with any of this and has been largely silent and invisible other than saying from the sidelines, “Go team, go!” Personally, I don’t see the point in having tests if one isn’t prepared to act on the results (other than going to one or more additional appointments).
Sometimes, elders seem to think just the act of going to the doc is all it takes. A nice pat on the shoulder, nothing too alarming. Someone else in control, so no follow thru needed, no sense of the personal responsibility. And at some points, that’s ok.
Himom, you understand medicine, likely better than your sibs. Maybe they’re assuring themselves as much that they’re good children, by tending to these doc appts. Maybe that’s ok, too.
@HImom - There are a lot of variables here. Is the goal consensus? Safety for elders? Viable plans as the two declines progress? What happens when being at home is contraindicated? These are the macro questions that may help drive the micro questions. Perhaps engaging a geriatric care manager is a comfortable way to have an expert assist you and your siblings in sorting this out before things progress. They will also get to know your folks and perhaps be a resource as options are determined.
If the designated health proxy sibling is truly choosing to opt out of role, then who is designated as the back up? Sorting this out becomes mission critical as individuals outlive their body’s functioning in various ways.
So many shades of gray. It is important to be realistic about elder needs, as well as family’s wish not to rock the boat. I get how fraught it can all be and you have much more medical expertise and experience than many. Hope it works out that your folks have viable plans as this will be a big enhancer everyone’s peace of mind.
Geriatric care managers can help get concerned sibs out of the hot seat with others who may not be on board; they can diffuse conflict and anxiety, while helping to walk people through a quagmire. Such expertise has been critical when some family members don’t get it and one sib being the heavy is not useful.Your folks are lucky to have you in their corner.
We did go to a geriatrician twice at my older sister’s insistance with dad. He was angry and hostile and didn’t see the point and won’t return. Most of my sibs chose not to come.
Among my sibs and inlaws, there are 3 MDs and a dentist, so they certainly have greater medical knowledge than me.
My folks are on a waiting list to be admitted to a SR community. They have been on the list for several years and no assurance whether they will ever clear the list and whether they will be able to pass any admission screening. There is no alternative or backup plan at all.
My sibs and inlaws are all working (tho they have varying degrees of flexability with their scheduling). They don’t see any problem with the folks going for numerous appointments and tests with no follow through.
In aging, some supplements/OTC may be of help. I do think some specialist @HImom do tend to go a bit overboard.
With my mom’s dementia, she was ‘borderline’ for a pacemaker…we didn’t want her body to ‘outlive’ her mind. She died a happy death.
I meant to post this previously. I will catch up on this thread later. Off to work now.
I feel like as the senior ages, there should be less invasive stuff, less throw everything at it and more comfort care. My parent was on a very expensive cholesterol med, over $1000 for the donut hole Rx refills and is over 90. We took a year and weaned her off, slowly with testing and her lab work remained excellent. Since cholesterol meds are directed at long term health and longevity, and much research talks about 10-20 years down the road, it seemed dumb for her t spend so much money and have to take six pills a day for something that may never benefit her. On the other hand, keep the BP meds because why risk a stroke.
In the end, I had hoped my mother would go to the doc, have some exploratory tests done, because her diabetes was so terribly out of whack, I hoped they would either adjust some med or get her to pay better attention to what she could control. (Remember, she had moved to another state.) She was competent, but I was afraid some worse thing would happen for it- like a debilitating stroke. But she had gotten frustrated by all that and didn’t want the job of taking more active control. She didn’t want to have to.
After her death, we realized just how much her physical ailments had impaired that competence. She could function, interact, was up on current events, could hold intellectual conversations, pay bills,etc. (And I was vigilant. I knew her apt was a wreck, she was a hoarder, she made excuses, but thought she herself was fine.) But behind the veil, ridiculous. Not all her spark plugs were firing. It’s hard to tell, while it’s going on. Hard to know what to do, when.
@travelnut, I like what you said and your mentioning that no more should be asked of these failing bodies reminded me of what I have observed the past year or two. There is a sort of mental muscle memory, when a senior is in their long time home, there are many things they do by rote, automatically. When they are moved, like FIL out of home of 50 years into IL, all of a sudden they have to utilized their limited energy to complete those things which were automatic in their home.
I have seen it with my parents and my in laws, once they are taken out of their comfort zone, they are so much less capable. Many of the tests and procedures would be cruel. I am stopping mammogams for a 90+ year old because we would not pursue surgery or treatment if anything were found, etc.
@somemom I agree, there is no reason for a frail elder to take cholesterol meds. But can be stopped without weaning necessary. I’ve been trying to convince my dad’s doctor to take him off. He’s refused but my mom’s doctor was fine with doing such. Also current guidelines for mammograms are to stop after the age of 75 no matter what the health status.
@HImom I’m surprised with your family of physicians there are not more voices for decreasing medical evaluations. I recommend to continue to be a voice of questioning as it’s a voice your family needs. Your decision to just “sit out” on travels to unnecessary tests, visits, and interventions is a good self preservation strategy. But, since there is little rational reason for some of the tests, arguing won’t help. I do what you do. I focus on comfort care. I brought my father to the doctor for a trigger point injection as his finger was painful. But I won’t bring him for cardiac testing, and won’t remind his physician that he is due according to guidelines, as I see little reason as any heart surgery is out of the question. If he was swelling or short of breath, that would be a different matter. I’m not going to make a big deal that mom, and often dad, don’t take their medications as they feel fine without them.
When my parents were competent, I asked them if the best they could hope for was to be in a nursing home for the rest of their lives, would they want to be kept alive? They both said “absolutely not.” Therefore, they both have DNR orders in their “life capsule” in the refrigerator.
We did not have to wean her from cholesterol meds, but she had just filled the 90 days x 6 pills, so we went to 3, then 2, then 1 and did some lab tests so she felt good about the choice, since we had the meds anyway.
Interesting about mammograms & 75, she still gets the reminder every year to go for the test, I guess the imaging center did not get the memo.
I stopped taking her to the cardiologist, too, this past year, as she is no longer in a state where we would consider heart surgery or serious risky procedures.
Frequent, Brisk Walks May Aid Those With Early Alzheimer’s
https://www.nytimes.com/2017/03/01/well/move/frequent-brisk-walks-may-aid-those-with-early-alzheimers.html
When my father was terminal with renal cancer at 86 my mother took him to a cardiologist and dermatologist. I demanded she not put him through this but she did it anyway. When she was 93, I talked with her geriatrician and he took her off the sleeper, water pill, and cholesterol med but left her on the psych med (the last one to go in my opinion) thyroid, and osteoporosis pill. This was after she passed out and had a neck fracture which required no surgery. We stopped all screening as soon as she went in the assisted living around 2 years before, I guess around 90. I’m not sure what she did before that. She felt comforted going to the doctors and that was like a paternal ‘your doing OK and keep doing what your doing’ thing.
^^My MIL gets comforted by doctors too . . . something I have never understood. Its particularly frustrating when they have been of so little help to her, at least as it seems to me anyway.
My older sister religiously takes mom when sis goes for mammograms and they both get them together. I’m not fighting that battle. Those of us who don’t agree just distance ourselves from the process.
I did get two appointments cancelled. One was dad with the internist with no testing just to chat with no testing to review. No one could take him and I saw no point so I cancelled. Mom was also supposed to see internist to review NORMALLY cardiac test results I had just taken her to cardiologist to review. I cancelled. I saw no point and said that to internist’s office when cancelling. Everyone else said they were unavailable (as usual) and I was unwilling to expose all of us to waiting room germs for no purpose.
One has to choose battles. Dad and my older sis and older bro believe EVERYTHING should be done for dad (and likely mom too). Have heard medical personnel will listen to most strident that is most likely to sue as well. The inclination is more medical intervention anyway. Sadly, when the mind starts to go and all their friends have died they become increasingly lonely and in dad’s case angry.
Navigating the world of elders rarely involves the ideal and we all do the best we can to work around all the challenges. I get the choosing battles, HImom.
My frail 92 year old father with dementia is bedridden, losing weight, exhausted, and bleeding internally at an unknown rate. I can’t imagine asking any more of that body, including diagnostic testing. The hardest part may be the middle of the decline, when things are more ambiguous, differing perspectives compete and family members adjust to the new normal. Many seem to cling to unrealistic expectations and some can’t imagine offering a point of view that their parents wouldn’t want to hear. A certain amount of nonsense seems almost inevitable when all players aren’t on the same page.
Takes a lot of patience and realism to target the most critical things while letting the extraneous stuff go.
To me, it seems that people revert to their most comfortable persona during times of difficulty and stress. For dad, that’s being angry when he gets confused. For mom, that’s being sweet, cheery and agreeable.
My sibs who insist on “everything” are notably often MIA when it comes to the many things entailed in “Everything,” and always conveniently mention that they are working (tho they can take off or adjust their schedules when it is to travel or anything that suits them). I really hate when my sibs make appointments for my folks that they can’t take them to and expect someone (me) to clear my calendar and take them. This has happened often.