<p>A dear friend recently had her husband of 40 years die (I believe he was in his 80s). She and all of us were sad to see him go, but he was in a wheelchair or bed most of the time since his hospitalization for a heart attack in November. It was becoming increasingly difficult for her to provide adequate care for him at home while working full-time. She went home every day at 11 to prepare him lunch and hired someone to come in & spend time with him later in the afternoon, giving him a snack and play a game or read to him. This routine was exhausting for her but she was making it work as best she could. </p>
<p>I have been seeing this increasingly in a lot of the elders around here. As they get older, they are more difficult to care for or obtain care for. Many tend to linger and live much longer than they might have in prior years with heroic medical intervention that can keep them alive though pretty immobile. My sister’s FIL is similarly not too mobile, was refused readmission to the care home he had been living in and is now living with his S & DIL in their apartment. He has had strokes and is partly paralyzed but combatitive and was not well-liked by the care home staff (once he left the care home for the hospital due to a fall and subsequent hematoma that needed surgery to drain from his stay at the care home). One of my sister’s friends has her mom who is alert & very sharp but mostly confined to her bed due to complications–the costs of her nursing home care will likely exhaust the equity in her home. One of mom & dad’s friends (think he’s in his 80s) just had hip surgery, though he’s had a spate of health problems, this just seems to be one more on the list.</p>
<p>Somehow, it doesn’t seem like things were generally dragged out this much in years past. Three of my grandparents and most of my aunts and uncles (even great aunts and great uncles) did not linger, only one grandmother did live in a convalsecent home for about 6 years.</p>
<p>Is it just me or does it seem like folks linger and spend a lot (especially fairly invasive and heroic medical interventions) in their last days, weeks, months and years of life with dwindling quality of life? I know that some studies I have seen which have shown that there tends to be a LOT of expensive treatment in the last month(s) of life.</p>
<p>Any such thoughts are immediately responded to with ‘Soylent Green’ type accusations and nothing is ever done. A friend’s mom had her insurance company pay $200k to replace two knees plus months in rehab and such only to succumb to stomach cancer - something that had serious symptoms in the past but was not really checked… so while the ortho’s were busy installing robo-knees it was all futile at the end - and, if my friend is to be believed, the mom (MS RN) pretty much self-meditated her way out of her problems at the end…</p>
<p>HIMom
I have the same sense of things. My mom died three years ago at age 93. At the time of her death, she’d been living in a nursing home for three years (complications of dementia), but only after she lost the ability to walk. Before that, she lived at home with us. Except for the dementia which progressed very slowly over 4-5 years, she was physically as strong as an ox – not a single medication, no surgeries. And so her slow, inexorably decline was really heartbreaking. She had been very clear in her wishes that there be no invasion medical interventions – and we would of course had respected her wishes. The sad irony is that even so, she lingered. </p>
<p>I don’t know what my personal tipping point will be, when enough is enough in terms of medical intervention. But I do believe that palliative care has an increasingly important place in end-of-life and death-with-dignity decisions.</p>
<p>Connecticut had one of the very first Hospices. There are a few around the state now, but their numbers are dwarfed by the number of Nursing Homes … really expensive Nursing Homes. DW’s grandfather received $180K heart surgery six weeks before dying of leukemia. Is that worse than spending $250 vegetating away in a nursing home the final four years of one’s life? IDK. Is it good public policy that governments will pay for Nursing Home care but not in-home care? IDK. But all of this seems very odd in light of the lives we lead when we’re in decent health.</p>
<p>Several years ago, my mother’s primary doctor wanted us to do bowel surgery on my mother for cancer (she had no symptoms). My mother was 82 and not in good health. She had serious breathing issues (stemming from whopping cough as a child) and was very frail. I thought the doctor was nuts and felt vindicated when we met with the surgeon. He told us that she would never die of the cancer because the lung problem would kill her first. He also said that she probably wouldn’t survive the surgery and if she did she would most likely be on a respirator. I knew she wouldn’t like that. We nixed the surgery and the primary doc was really irritated us but too bad. This was her life and none of us could see putting her through all that for basically no improvement in the total health picture.</p>
<p>I think you are absolutely right. It’s hard to say, but I sometimes think we’ve overridden what nature intended and what is really good about life. For me, it’s in the realm of “just because you can doesn’t mean you should.”</p>
<p>When I worked in a rehab hospital, I was often surprised to see the elective surgery frail and elderly people would endure just to extend their life a few years (months?) But there was something I really admired called “DNR” status. This stands for Do Not Resuscitate, and certain patients chose that they not be given life-extending interventions if the situation should arise. If a DNR patient were to go into cardiac arrest, they would not perform CPR and allow that person to pass away, instead of reviving him. I found this to be a very respectful option.</p>
<p>Although newer medical technology has sometimes extended the lives of elderly people beyond the point where they are meaningful, I wonder how much of the problem of frail, dependent elders is due to changes in younger people’s lifestyles, rather than changes in technology.</p>
<p>In my own family, there were several instances in my childhood where frail or chronically ill elderly people needed substantial help for several years near the end of their lives. Somehow, it didn’t seem overly difficult to provide that help. There was a lot of extended family nearby, including some people – homemakers, retired people, etc. – who did not have full-time jobs and could rearrange their schedules to help meet the frail elder’s needs.</p>
<p>But if the same thing happened in my family now, it would be impossible for family members to meet the frail elder’s needs without extraordinary sacrifice (such as giving up a needed job and moving to a different part of the country). We’re just too spread out geographically, and practically everyone works full-time and needs to do so. Also, because of smaller family sizes, there are fewer family members now than there were a generation ago.</p>
<p>Would HImom’s friend have been so exhausted if there were several other nearby family members who could provide a substantial amount of her husband’s care? And would there have been family members who could do that if he had become ill several decades earlier?</p>
<p>We are dealing with this exact issue. My husband’s father is ailing now. He lives at home and his wife does most of the care. A health aid comes for a few hours during the day but currently there is no one at night. </p>
<p>Now that my FIL can no longer support his own weight when standing, my MIL needs help to put him to bed at night. Every night. Used to be that she’d need help only occasionally when he was having a bad day but now it is every night. So, the sons are called upon to help. This has required compromise on the part of everyone and as you know, compromise can be difficult. We had to insist that he go to bed earlier. In the beginning, they wanted someone to come at 11 or 11:30pm to begin the process (it can take up to an hour). My husband finally said that that was just too late for him (his work day starts early and his brothers starts even earlier). My MIL was really angry about that, but finally agreed. </p>
<p>So yes, there are relatives around to help, but it really in inconvenient to do so - especially if you factor in driving distance. And then if you stop to think about how much you actually like the relative… And yes, that thought will cross you mind. </p>
<p>bookreader, aren’t there contraptions you can get that assist a patient in making a wheelchair to bed transfer without requiring another person to support the patient’s weight?</p>
<p>It might even be possible to do it without gadgets if your in-laws can obtain a wheelchair where the arms fold down easily. That would make the transfer mostly a matter of sliding rather than lifting, and your MIL might be able to help with that without additional assistance from a second person.</p>
<p>Of course, all of this depends on the extent to which your FIL can assist with his own transfers.</p>
<p>Difficult issues discussed here. I knew a well-respected man who died at a very advanced age. His wife had died years ago, he was lonely and in significant pain for years, though well cared for at home and cherished by his family. He was completely mentally alert. The suffering was real and difficult. It was clear he had had enough and was just waiting. He had a few close calls as things progressed, and was actually disappointed when he made it through.</p>
<p>My FIL is basically unable to do anything for himself. He can not move himself in any meaningful way. I don’t think that his wheelchair arms move, but even if they did, my MIL could not move him alone since he can not help in any way. And he is over 200 lbs while she is barely 100 lbs. </p>
<p>I’ll ask to see if there are some other options. We have not looked into that avenue.
Oh wait, I just remembered that there is still the diaper issue. Right now he stands (with someone holding him up) for just long enough for Mom to get the old one off and the new one on. Hmmm. Maybe there is another way…</p>
<p>(I will get on my soapbox for a minute to remind everyone here to get out and exercise!!! My FIL never did and so as he became ill and less mobile, the little bit of muscle he had quickly withered. And he put very little effort into physical therapy. Bottom line: don’t stop moving!!)</p>
<p>One woman testified that her dad was put into the hospital with his very end stage emphysema & she had to struggle mightily to get him released to hospice–it took a month or longer and a ton of paperwork & hassles. He racked up a $240,000 bill and only had a few hours in hospice before he was allowed to die.</p>
<p>It makes no sense that so many resources are poured into people with multiple health issues who are in their 80s, 90s & beyond when there are so many who can’t even get basic medical care for themselves, their kids and infants.</p>
<p>My SIL’s grandmother broke her little toe and was hospitalized. She was still completely healthy, functional and lucid at 90-100+ (forget which). She called all the family to say goodbye and asked to only be given saline IV & was allowed to die peacefully in the hospital after she had bid farewell to all.</p>
<p>Very few docs and families are comfortable with or do much discussing of advanced directives and what people really want or benefit from at the end of life. I know many with emphysema and chronic bronchitis who just get tired of the endless and increasingly frequent hospitalizations that leave them ever more breathless. I also wonder at the expensive anti-cancer meds and at what point it continues to make sense to administer them–draining the bank accounts while not necessarily adding much to the quality or quantity of life for patients.</p>
<p>Just thinking out loud. Wish we as a society could be better about considering how things may be done better in other societies than we are doing with our frail elders. I do NOT recommend or commend how the US treats its frail elders.</p>
<p>Bookreader,
There is a hoist-type of in-home device that can be used to help lighter people move heavier people. I know that one of my friends helped care for her mom in-home. The invalid was obese and blind. They had a crane-type hoist that was invaluble in helping her transfer to & from bed and/or chair. I never assisted so don’t know the details but expect that durable medical equipment companies in your mom’s area should be able to let her know what is available as an assistive device. Her situation is NOT uncommon, having the lighter woman have to figure out how to care for the heavier invalid. The medical social worker might also have suggestions.</p>
<p>My parents and in laws all have living wills, DNR orders, no-feeding-tube instructions, etc. set up. It was a blessing when my mom was ill, although we had to give the paperwork to the hospital at admission, when she was moved to SICU, and when she was moved to recovery … then again when she had to go back to the hospital from rehab. They don’t seem to want to share that information with each other within the hospital. </p>
<p>The hospitalist assigned to my mom, who never spoke TO her (only ABOUT her), told us that my mom’s refusal to have a feeding tube was part of why she died. Not true, but the doctor was a disgrace to her profession. We explained that our mother had made her wishes clear, and we didn’t care that Dr. rhymes-with-rich thought she would somehow miraculously survive if they debrided her stage IV ulcerated bedsore and scraped the bone … which could not be done without consent for a feeding tube. Dr. seemed to feel that it was simply mom’s lack of eating that was a problem. No … the osteomyelitis from the bedsore (7x3x1) and the MRSA throughout her body were more likely the culprits (duh). She was dying and had made her peace. Left to her own designs, though, the doctor would gladly have put my mom through more pain … for what!!!</p>
<p>I think fear of lawsuits drives a lot of care that is unnecessary. In addition, as a society, we seem to be more afraid of dying than our ancestors were … and we tend to want to do “anything” to keep our loved ones alive. </p>
<p>When our older folks choose not to have certain procedures, they get pressured. My parents’ neighbor’s doctor was angry with him for choosing not to have chemo when he had cancer … but he didn’t want to go through that at 80. My own dad had to search for a doctor who would deal with his kidney tumor the way dad wanted, because he refused the surgery that had a good chance of leaving him on dialysis. Again, maybe fear of litigation is a factor.</p>
<p>We will all die eventually, but we should be allowed to die on our own terms.</p>
<p>I’ve told my husband that if I develop dementia, I want only comfort care. No antibiotics, no treatments of any kind, definitely no feeding tube. I volunteer in a nursing home and the residents with severe dementia make me incredibly sad – the ones who don’t know where they are or how they got there and are scared and crying to go home to their mothers. It’s heartbreaking.</p>
<p>What I’ve seen is that sometimes it’s the family members who are in denial about an elderly relative’s condition. At the place I volunteer, there is a resident with severe dementia who is not able to communicate, ambulate, use the toilet or care for herself in any way. She has a big sore that isn’t healing and infections around the site of her feeding tube, also chronic diarrhea caused by the huge amounts of antibiotics she’s being given. I cannot imagine that this woman has any quality of life whatsoever, but her daughter insists on every possible treatment and takes her mother outside the nursing home to see various specialists (which requires specialized transportation to accommodate the resident’s wheelchair etc.). Another family member filed a complaint because she said her mother was upset about being moved to a different room – the resident kept saying she wanted to go home and the daughter said that meant she wanted her old room back. I talked to the resident and she had no idea that she was in a new room – she wanted to go home to her (long-deceased) mother.</p>
<p>I think there should be some kind of guideline, something like:</p>
<p>After the age of 80, or after 60 during a terminal illness, all patients should be offered a second opinion before any serious medical procedure, and the risks/benefits should be carefully explained.</p>
<h1>I know my mother endured a completely unnecessary surgery, at the urging of her primary care doc, when she was dying of cancer. In retrospect, our family should have realized how stupid it was, but we were too rattled and upset to connect the dots.</h1>
<p>HImom, don’t you think that part of why you are noticing so many incapacitated elders is that we are now at that age when caretaking of parents is our responsibility? Maybe there are more of them also. I know that when I was young, I didn’t pay as close attention to dependent frail elderly because my parents’ generation were the ones taking care of them.</p>
<p>No, I honestly think a LOT more treatments are being thrown at elders than were previously because the technology is available & people DON’T do risk/benefit analyses. Many of these SRs have so many co-morbidities that treating one condition may and often does worsen others. </p>
<p>I believe that a significant # of folks on dialysis have kidney failure as a side effect of medication. We know at least two such cases personally who were never told that they could have this side effect & it wasn’t monitored nor noticed until too late.</p>
<p>I don’t believe people lingered so long in prior years–pneumonia was the old people’s friend. Now, many have repeated pneumonias, “cured” after each, only to be readmitted with a new one months later. Is this good? Is getting surgery in the 80s or 90s when one has other terminal conditions a good use of limited healthcare resources? What about premies not expected to live? How many millions should be expended on them & to what end?</p>
<p>I don’t have answers but increasing #s of questions. In our state, we don’t even have pulmonary rehab, which is shown to enhance the quality of life for folks with lung disease (emphysema and chronic bronchitis). This is one of the FEW treatments shown to be effective but it doesn’t provide enough profit and only our VA offers it in our state. </p>
<p>I don’t have answers just a lot of questions. Sorry!</p>