ELDER MUSIC: The Queenston Trio
A TGB READER STORY: Singin’ All the Way

Crabby Old Lady Tries to Manage Her Disease

TGB readers generate a lot of good ideas for blog posts, sometimes without knowing it. The latest that caught Crabby Old Lady's attention is pretty much a perfect fit with one of the tenets of TimeGoesBy – that we talk about old age things here that nobody ever tells us will happen. We discover them the hard way.

About a week ago, Patty-in-New-York left, in part, this comment:

”Reading this post,” wrote Patty, “I was struck by how complicated it is, managing your illness.”

No kidding. As soon as Crabby read that, she realized such thoughts have been rolling around in her head for some time, just slightly out of reach. Patty's note made them manifest along with instant understanding that Crabby is far from the only old person doing this.

MEDICATIONS
Start with medications. It's not just the pills themselves, it's how and when they are taken. Crabby has one that she takes first thing in the morning. Another – a double dose of two pills - to take 30 minutes before breakfast.

There are five or six more she takes at the beginning of that meal, and another pill that she must take before every meal and every snack she eats; it is crucial to replacing the enzymes her body can no longer produce on its own.

Then there are the evening pills. Some related to the evening meal, others not. Oh, and one more – Crabby takes cannabis in a variety of forms an hour before she intends to go to sleep to relieve the insomnia she lived with for many years.

Crabby counts out all these into little pillbox containers every Saturday for the coming week. She's been doing this now for two years. It's boring. Really boring. Crabby sighs a lot on Saturday when she counts them out.

Since the breathing problem appeared, Crabby has been on an inhaler four times a day which is now plugged into her schedule with the pills and altogether, they go something like this: 6AM, 7AM, 10AM, noon, 2PM, 6PM and so on. It means being in almost constant communication with a clock all day every day.

About a year ago, Crabby needed to inject a solution into the fat in her belly twice a day for two months. This is not fun and the longer it went on the fewer “clean” places there were to stick the needle. Thank god she didn't need to find a vein.

WEIGHT
As Crabby has undoubtedly mentioned, cancer and chemotherapy eat up energy (calories) faster than a healthy body and weight loss can quickly lead to frailty. Crabby is regularly admonished by the nurses and doctors to eat lots of protein and animal fat and if she is not eating enough, weight slips off her body like water after a shower.

So first thing every morning Crabby weighs herself, marks the number on the chart she keeps and adjusts her eating for any given day on whether her weight is heading up or down.

NORMAL ACTIVITIES
Start with the aforementioned shower. For reasons Crabby doesn't understand, showering leaves her breathing hard before she's halfway done. She is completely baffled as to why standing mostly still while lovely hot water falls over her body should do this.

Making the bed since the breathing problem appeared is a long procedure; Crabby needs to sit and rest two or three times when straightening the covers, and don't even ask how many times she rests while changing the bed.

Even getting dressed sometimes requires a rest period to get her breathing back on course.

Carrying groceries in from the car? Crabby used to just grab all the bags, even six or seven of them, and walk them into the house. With the breathing problem now, that many bags requires at least three trips with a 10 minute rest between each one.

Further – again, associated with the breathing difficulty - even standing still can be exhausting. It still surprises Crabby every time she washes the few dishes one person generates that she's breathing hard before she's halfway through two plates, a cup, silverware and a pot or pan.

Often, just bending over to pick up a dropped pen or pencil results in a few minutes of heavy breathing.

In comparison, laundry is relatively easy. Throw it in the washer with the soap, then dump it in the dryer. Crabby can manage folding with only a couple of rest periods.

OUTSIDE ACTIVITIES
Mostly, Crabby can manage only one trip from the house per day (she has come to think of them as expeditions) to do the grocery shopping, a medical appointment, lunch with a friend, etc.

Nowadays, Crabby takes stairs slow and easy, trying to avoid them if at all possible. Even slight inclines in the pavement for a few feet leave her exhausted and breathing hard.

And it's more than just the physical activity and driving; there is a kind of psychic fatigue at being away from home that piles onto “normal” sluggishness resulting from what it takes to get through a day now.

TIME SLIPS AWAY
All of this, and more that she skipped over telling you, eats up hours from Crabby's day, especially when she's tired enough to need a nap. But she signed up for it and shouldn't complain – at least, not too much. She can ditch all the treatment at any time and let the disease take its course. No one is stopping her.

So far she is willing to live this way although what she lately misses most is personal time. She goes brain dead by about 3:30 in the afternoon which means that in addition to household maintenance for the day, she is done with books, magazines, the internet, email, writing the blog – anything that takes mental power.

Speaking of email, a goodly amount of it arrives daily with messages, questions, suggestions and other missives from readers that need at least a “thank you” if not a longer response.

But there comes a time in the afternoon – usually around that 3PM mark – when Crabby cannot sit at the computer for one more moment without crashing. Her body is done for the day.

When that happens, unanswered email is likely to go unanswered indefinitely as it gets mixed with all the new stuff that drops into the inbox and as Crabby just described, there are many fewer hours in her day than there once were. She tries, but she hopes you will understand if you don't get an answer.

YOUR TURN
One of the few things Crabby Old Lady has learned over time all by herself is that if it is happening to her, it is happening to a lot of other people.

Crabby isn't the only denizen of TGB who struggles with managing a chronic or deadly disease (or "just" getting older) and she wonders what you do to keep it all together. How do you deal with needs, limitations and surprises old age inflicts?



Comments

Hi Ronnie...it's a great mystery isn't it? The management of our treatments as well as administering them. And then maintenance of the appliances? At least for my breathing there's a nighttime machine as well as the twice a day nebulizing machine, both of which need periodic cleaning. I got a little collapsible cart which can either be in the trunk to carry things into the house, or vise versa. It saves my trips back and forth. Some neighbors choose a wire kind, but mine's some sturdy plastic device. When closed it's about the size of a big briefcase with 2 wheels.

I will be counting out my pills and smiling as I think of how I once missed a dose of the right kind and got a double dose one day...and somehow survived.

And don't forget to give yourself credit for all you do so well! I (and many others here) so appreciate your sharing your life in such an open and humorous way.

Thank you, Ronni, for - as usual - saying it all so well and so realistically. Thank you, Barb, for your reminder to Ronni!

Detailing your day in the coping with it ALL trench must have been exhausting in itself, dear lady. I thank you.

I am grateful to read one statement in particular..." there is a kind of psychic fatigue at being away from home that piles onto “normal” sluggishness resulting from what it takes to get through a day now."

I am so very aware of that myself. I plan a couple of stops when I must go out and never make the second one as I'm feeling literally desperate to get home. At times I have planned to go out for just a much needed haircut and by the time I'm ready to go with the walker in the car, etc. etc.....I'm simply can't do it...and tell myself ,yet again, I'll do it tomorrow. "Tomorrow" is now my favorite day of any week.

One helpful idea I want to offer is to invest in a light weight rolling walker WITH a seat. I did this 2 years ago and I hesitate to say "It changed my life!" but it did. I had to go for a scan at Meridian Park Medical Center. Even though I brought my cane, by the time I made it down the very long (at least a quarter mile in my mind) to x-ray I was shaking with fatigue. Long story/short version...On the way home I stopped at a large drugstore and bought my new best friend. Like you, I have lost weight, and could buy a smaller walker. It only weighs 15 lbs., has a compartment under the seat for purse, water, glasses, whatever. I can tip it and leverage it into the car myself, but in parking lots their are usually gentle people around offering to help.

With a walker I can sit and rest in checkout lines, or while looking for something on shelves etc. It has been more of a help than I ever imagined...even just sitting and rolling around my small kitchen is borderline "fun" and far less of a drain on what energy I still have. Just holding good ol' me upright seems to be the biggest problem.

I hope you find this helpful.

Thanks for today's blog. If anything, it makes me realize how lucky I am not to have any ailments that require a regimen of pills, shots, and treatments. Just two pills in the AM and that's it so far. However that my not last long. I recently found out that I have 3rd stage kidney disease (not as bad as it sounds) that may require more pills and god-knows-what-else. I am not looking forward to becoming one of THOSE people who's lives center around the medications they take.
You also mentioned that you still drive a car. I hope none of those meds or your chemo affect your ability to safely operate a motor vehicle. It would be a bummer if there was something else to complicate your life.

This all sounds like the aftermath of my open heart surgery. I can recommend that you get a shower chair ASAP. If we had not already had one for Jim, I would have had to buy one after my surgery. They really help.

Although a decade younger and with no health issues, I too find I am done by 4 p.m. It's been like this now for a couple of years. Can't explain why, but I become a different person late in the afternoon. I am no longer an extrovert. Chores really do become chores. I am easily annoyed. I've had to bow out of most late day activities or appointments because of this.

Charlene's "Tomorrow is my favorite day of the week" just about sums up old age and the fatigue it brings for me. I'm not coping with a serious illness but even so I can so relate to that. Thank you, Ronni, and thanks to your wonderful readers. What a community we are.

I have been following along Ronnie and my heart felt good wishes go out to you. Thanks for sharing your journey with us. It makes me appreciate the less than good days knowing it could be a lot worse. I'm not religious but ask the Universe to wrap its loving arms around you and keep you with us for as long as it can.
Chillin

Wow, I didn't realize you had so much to do every day. And kudos for doing it, keeping up with the relentless self attending, while also doing all the choring and maintenance that is required of solo living. I have to wonder if I would opt for assisted living or not. You have a strength that is of the heart and mind, I admire that. Many blessings and moments of great joy to you, Ronni.

And add in being part of the Sandwich Generation, many of us are helping with grandkids and great grandkids, our spouses, and parents...
I would add we got the walker with the seat, and the shower seat, and Ronni didn't add
scheduling all the doctor appointments, and blood tests etc. Answering the robo calls, and getting to those appointments too.
For years I've gotten emails and info from Caregiver Magazine, it's a great source about taking care of these things and yourself, m
"You forgot the doctor appointments, blood checks, and worry. Tip, I am also ready to collapse at 3-4 PM, so I take a nap. or at least meditate. I watch Michael doing all these things during the day, and swallow my own pills. and it's only Monday. " is what I wrote Ronni.

I don't have cancer (well, not yet that I am aware of) but there is much going on in my body that keeps me in the house ~~ stuff you don't want to hear of, and nothing I want to print here. Trust me, I am often so uncomfortable or in pain (or worried about what I fear can happen in the next few hours) that I am reluctant to go anywhere. Peers in (relatively) better shape have been known to scold me for being such a recluse......"just get out there" they say with no knowledge of what's going on in my golden years. I am that Art Linkletter sissy type these days.

I have such big-time empathy for you, Ronni, and the rest who post here.
It turns out that you gift me with comfort in knowing I am not alone. Feeling alone and dealing alone is hard.

Perhaps the moisture in the air in the shower stresses the lungs? Worth asking your Doc sometime.

Each year I pine (quietly) for energy I once had.

Charlene, "tomorrow" is becoming my favorite day of the week, too.

One thing I started after a diagnosis of osteoporosis a year or so back was a vitamin/calcium/magnesium/probiotic regime with OTC meds. (I didn't want to take Fosamax because of the side effects, though I had a prescription.)

So, even with these simple OTC pills, I find myself having to remember to buy them, dose them out properly, and take them every day, a ritual millions are probably performing also. I have no idea if these often recommended supplements will have any real effect on osteoporosis, but my nails have improved a lot ;)

Still, it seems like a LOT of pills. At least until I remember that my mother was on *14* different prescriptions at the time of her death.

Another thing to develop a "system" for!

Thank you for being so real for us. My mom had cancer for a short time before the treatments did her poor body in. She was an energizer bunny for as long as I could remember. The chemo was just too hard on her but was doing it's part on the cancer. I miss her tremendously.

Thank you to everyone - and you Ronni - for sharing your experiences. Such daily struggles are largely ignored by society unless they turn 'us' into victims. Victims: my arse. Survivors, I say.

Sometimes,persisting pain makes you forget your own whereabouts and what you had organised to do.The best solution is to be not so hard on oneself and say to self tomorrow is another day and maybe better.

Oh Pat, your reference to "my golden years." gave me a smile and now why....

It reminded me of a comment from my old friend from College days.(60 years ago !) She is 2 years older than me and a writer that has now lost her sight. :-(

We still communicate across the miles by phone. In frustration one day she said" Gads! I'm not going to complain about not getting my Golden Years, but I sure would like a golden day, or maybe even a golden week would be very nice indeed!!"

Many here can relate to that sage line and do I ever miss her wonderful letters.

Wow, what a complex regimen! I'm not sure I would/could do it all--and I'm relatively healthy for 82.

I don't have cancer (that I'm aware of anyway) but, like Uma N., I can definitely relate to the limitations persistent pain imposes on one's activity and energy. It can turn entire days into c***, sometimes more, sometimes less.

Longevity is turning out to be a mixed bag indeed, at least for me. It is what it is. . .

I have a few neurological and orthopedic ailments which aren't fatal but periodically annoying and intrusive. In addition to keeping track of meds, I am spending lots of time exercising in and out of water, going to P.T., seeing doctors for check-ups etc. Trying to stay more or less healthy is very time consuming but I want to keep active so...

I've had asthma all my life so got used to managing it with all the medical changes that have
happened over the last 60-65 years. Thought I was pretty smart and thought this stuff was easy.
Then I got older with bone aches, gout, etc. Like Ronni says, pill management becomes a job.
That's not even mentioning keeping all the MD appts. straight. What a hassle! My mom (95 now) says you have to get everything done in the first four hours. After that you're too pooped and brain dead to do much more that is useful. Ronni, you're right. Many of us don't
have the training for all this! Thanks for the great read.

You must be super organized, Ronni. It would take me a week to do one of your days.

Sounds like COL is managing quite well .... considering. Absence of bitterness in her account is laudable.

I remember and miss those years when an annual physical, vision check, bi-annual dental cleaning pretty much summed up my medical obligations. Somewhere along the way in recent years that has gradually changed and though I have no diagnosed terminal disease, a number of “pre” this or that, or risk indicators, or parts “wearing out” have all conspired to require much more time, meds, mental focus and home activities that now are spread throughout the whole year — so annoying, plays havoc with my schedule, but could be so much worse.

I’ve recently acquiesced to using a cane, engaging in P.T. and find standing tiring to the degree of wanting to lean and sit much too frequently — even occasional afternoon periods of shut-eye. My ongoing right-sizing efforts have added that other day to my week — tomorrow. Keep on with whatever you’re doing as seems to be working.

I have similar pill counting responsibilities, with three different 7-day pill boxes. A lot of the pills are OTC supplements ordered by my doctors -- calcium, D3, fish oil, multivitamin -- in addition to the prescriptions. At some point in the last couple of years I realized that simply keeping proper track of all those pills could become a valid reason for having some in-home or visiting help. Even now it takes all my concentration to keep them straight.

And I share the experiences of many -- only one trip out of the house a day, wishing for a place to sit down briefly while standing in line, etc. As for making the bed every day, I pull the covers into position while still in bed, and then sort of slide out the side. That leaves only my "exit point" to straighten. Changing the bed, however, since it includes laundering the sheets, is an all-day job.

The fine steamy, water particles from a hot shower are inhaled and further stop up your breathing Ronni, and mine. I have serious lung disease and life long asthma and I had to give up the steamy showers about three years ago. I've had asthma all my life and it used to be shower steam would loosen the goo and help me breath but no more. It's nearly as bad as blowing dust. I really miss those hot showers.

I have am/pm pill boxes. A number of times a day I have to spray stuff into my lungs. A new spray was added and I turned out to be allergic to that, it nearly shut down my breathing. I have a lunch time nose spray.

I just bought one of those folding plastic boxes Barb Rogers mentioned, it's really helpful for carrying stuff to and from the car. I have another much larger, taller fabric bag on wheels with a handle which serves as my laundry basket now. I can no longer haul a load of laundry around in my arms. Works pretty well.

It takes me forever to get ready for anything in the morning. I often cook or prep dinner (and snacks) right after breakfast because I am too tired to do it right before dinner time. Otherwise I skip dinner or have cereal.

I still have company for dinner. I make up a casserole or stew the morning before and use those bagged salads. Therefore no cooking on the day the company comes. And leftovers usually for me for the following day. Adapt, adapt, adapt.

Love you Ronni, many hugs.

Ronni, I have a progressive neuromuscular condition that is not life-threatening but greatly diminishes my stamina. At first I fought it tooth and nail; I was determined not to let it take over my life. Ha! After struggling and making myself (and everyone around me) unhappy, I have become rather Zen about it and just accept that it is what it is and do what I can at my own slow, rest interrupted pace. That’s how I deal with my situation.

Oh, Ronni, my heart aches for you. You don’t ask for sympathy, you just describe what is. And that could be the life of any one of us, if not now, then in the future.
If that day comes, I should say WHEN that day comes, I hope I face it with the fortitude and attitude you have. You are a beacon, showing us the way.
Your description makes me even more grateful for this blog. I don’t know how you do it, but I am thankful for the opportunity to share your journey.
Keep on truckin’.

We're all coping one way or another--some have a much harder road than others. It sounds like many of our lives now consist largely of coping. I wonder if some wish, as I do, that we had more control over when enough is enough. Even states where medical aid in dying is legal, such as mine, require a "6-month terminal" diagnosis to qualify. I'm not ready to toss the towel in yet--I have an 89 Y/O husband and 2 senior kitties who still need me--but it would be a great comfort to know that I could if my physical situation should become untenable down the road. . .

I know your site is a dementia-free zone, Ronni, but no doubt some people here have intersected with that other plague -- I don't want to get into ranking fatal illnesses, but cancer patients at least have the option of aid-in-dying, unlike Alzheimer's patients who can rot alive for years after becoming doubly incontinent and other horrors. My husband is only stage 5 (out of 7) and I have only been his caretaker for the past five years, told to expect at least another five and plan for ten more, by which time we will be bankrupted by so-called Memory Care costs -- around $10,000/month cash in Seattle now, and of course rising daily. Here is a recent episode that reflects what my days are like:

I am basically dying of his dead mother (died 2017 at 92, seven children, good death, long life etc,) I loved her until she was resurrected in his brain decay over the last six months. He worries about her every day. I have done everything, from reminding him she's dead, showing him the late photos and funeral etc, to saying anything to deflect him, to shut him up --she's recovering from surgery, she's on a cruise, or most often -- it's too late to call, it's too early to call -- anything, everything anyone has suggested. (Lying to ALZ patients turns out to be highly recommended.) But it truly doesn't matter because 10-15 minutes later he's back with needing to call her. OK, let's start again: it's kind of late, it's kind of early, didn't your sister tell you about.... ?? etc ad infinitum, at least five to ten times a day.

I started with understanding him, then pitying him and am now on the verge of something less pleasant, something like she's dead and get over it -- WHAT IS YOUR PROBLEM? I'm here, feeding you, consoling you, working to pay the bills and YOU WANT YOUR MOTHER??

OK, I know it's a brain disease. But he was a smart, funny person who actually cared about me. Now he is lost in the search for his mother -- she was an excellent person, whom I liked a lot until this posthumous apparition. Just now he walked out and told me he was leaving because I wouldn't find his mother. I'm like okay with that -- really. Go away, leave me alone, grow up etc. I know however he can only grow down and right now he is pacing in the front yard in the dusk. I realize he will forget and come back in ten minutes. They person I knew is gone, truly gone, but will his remnant will nonetheless be here for another 5-10 years (we are only five years in). I am the housekeeper and the caregiver, punto finito, nothing more.

Update: he's back in the house, seemingly asleep in his chair, obviously not going anywhere.

Cassandra, how absolutely awful--for you and for him! For whatever it's worth, I think elders should be able to state in legally enforceable terms our predetermined end of life wishes in writing BEFORE irreversible, progressive dementia sets in. If that were possible, I would certainly do so, and I've done my best to make my stance clear in my personal "survivor's letter". If I can possibly avoid it, I would not want my husband or adult children to be in the position of caring for a "shell" of me.

At least you have some help, but how many could begin to afford $10,000/MONTH for care (I'm in the Seattle area, too). We'd be bankrupt in far fewer than 5 years!

Thanks, Elizabeth, but I don't have any help -- I am alone with him, except for our son who does pitch in at times. We will be bankrupt not long after he has to be placed in a facility, which will happen only when I physically cannot deal with him anymore. Not sure what that will look like. As we "spend down" what money we have (he was the main provider and hasn't worked for over 8 years), we will gradually become eligible for Medicaid, which allows only $3,000 in "savings" before a person can be eligible for government payment for Memory Care or Nursing Home. And of course, Medicaid facilities are the worst of all -- nothing like the "upscale" $10,000/month places (none of which take Medicaid).

I agree, there has to be Aid-in-dying for late stage ALZ patients by prior documented decision, but it is too late for us. Plus, with Neil Gorsuch and the others on the Supreme Court, all such progressive legislation is at risk and ALZ patients will continue to be warehoused and to rot in order to satisfy some vague and ill-formed idea of the "sanctity of life" etc.

Sorry to rant and to intrude on Ronnie's site.

"What's it's really like to get old"....Behold, it unfolds for all of us to share right "before our eyes" like no other life's "graduating class" has ever jointly shared, and in large part thanks to Ronni. I can't imagine what cancer management must be like, but I am getting a vivid glimpse, thanks to Ronni and thanks to the comments on such things by the dear TGB readership. At 71 I'm heading toward something debilitating, catastrophic, and surely challenging--now better prepared for it, again thanks to this blog.

I'm trying hard to suppress the urge to become depressed from this all, and I largely succeed but daily and often there are small wavelets of sadness about decline and the ultimate destination I'm moving ever quicker toward. The worst part of it all is my brain and mind are changing along with the body. I hate this. I feel tricked by life and the drugs--hormones--that masked the reality of it all. But, alas, at least we get to socialize it and I am better for it! Take heart, we are not alone, until we are--it is all so enigmatic.

newsletters@caregiver.com

for some interesting takes on care for ourselves, and our families

It seems as if, contrary to the entire premise of Ronnie's website, that growing old is not so great, except perhaps for a lucky few.

True enough, Cassandra, but TGB belongs to all of us who are growing old. For myself, I was feeling a little like “what about me” because although I don’t have cancer, I am nearly 85 years of age and I have heart failure, arthritis, neuropathy, loss of kidney function, pulmonary edema, macular degeneration, PAD, allergies, and more. This requires managing 35 prescription and OTC pills a day. It means walking only with a cane and/or holding onto a stair rail or whatever is available for short distances, and causes great difficulty getting a supply of groceries upstairs to my kitchen one bag at a time, sometimes over a period of days.

House cleaning is done in intermittent 10 minute bursts (e.g. mopping the kitchen floor is done in three stages) and is only possible because I maintain a strict effort to make as few messes as possible and because my son vacuums every two weeks or so. Real cooking is impossible because I can’t stand on my feet long, so my diet consists mostly of toast with cheese or peanut butter plus frozen entrees, supplemented with vegetables and fruits if I feel like bothering with them. Oh, and ice cream.

Showers are rare because previous near misses have created a major fear of slips and falls, so I make do with a pretty good daily wash-up. The business of life is very slow and time consuming because every step must be calculated and calibrated to avoid accidents. Twirling and pirouetting to speed things up are no longer possible.

As for outside expeditions (and that word perfectly describes them), I can’t manage more than one a week, whether it involves a medical appointment or grocery shopping. All other shopping is done on line and anything recreational is a thing of the past. Celia said it right—life in old age is one long series of adapting and then adapting again as a condition gets worse or a new one crops up.

But I can be thankful that I don’t have your problems, Cassandra, because it seems to me that would be a bridge too far. It is so sad that this happened to your husband, but you are the one bearing the main burden. You are amazing for holding up under the stress as well as you do.

No, Emma Jay and Cassandra, growing old is NOT so great for many of us. The medical-research folks who are working on lengthening the human life span definitely need to factor in quality of life along with length. Also to be considered: the consequences of a growing number of physically limited old people on the social safety net--and on the planet.

Currently, I think most human bodies were "designed" to last 80 years or so, give or take a few. Medical science has made gains in treating many of the killer diseases of old age, but certainly not in some of the most debilitating and costly conditions like dementia. Most of us do the best we can to retain good health, but in the end "stuff" catches up with us despite our best efforts.

Some stay healthy longer like my husband, who is doing relatively well at 89, but many do not. I agree, Emma Jay, that given my own physical limitations, I'd be hard put to deal with Cassandra's situation, and I think she's amazing, too!

If I can have one more word on this subject, I need to say that despite relentless pain as well as difficulty doing anything physical, my quality of life is still pretty good most of the time. As a near-Luddite, it pains me to admit it, but I owe whatever quality remains to me to technology. I am still able to use my computer, from which I can go anywhere, learn everything, communicate with anyone, express myself.

I can still write the comments I send to the NY Times and other publications, plus of course TGB. I can write stories about my life that will outlast me, so anyone in my family—maybe my children, maybe my grandchildren—can, if they care to, learn about my life, how I felt, what I saw, what it was like way back then. I am also grateful to my easy to use iPad for helping me maintain connections daily by email with my family, whether nearby, in another city or across the country.

Of course I know that “stuff” will catch up with me and I may not always be able to do even this much. So I completely agree with Elizabeth that it should be my choice, without legal barriers, to end things when life is no longer worth living.

I was told by my pulmonologist not to take hot showers - take lukewarm, short ones.

I read all the comments and cry, I am thankful but do not like all that has happened to
me over the last 2 years. Not well, Hospice, then I was back to myself. The first of the year a heart attack, family all arrived since told I would not make it - but I did. Now doing well, could add a lot but will stop at that, but miss the way I was and repeatedly told to accept my
new life. This article and comments helped this one more then you will ever know.

A refreshing taste of getting through the day living alone and impaired from 30-smtg? Detroit writer Kristin Palm, author of poetry collection titled “The Straits,” a daughter who fractured her ankle after her father died. Lots of adult children need to have this kind of experience, IMO, to break through their fear of old people and their impairments and of getting old themselves.

I have a 96-yr-old friend living on the opposite coast (we are regular snail-mailers) whose all but 1 adult children in their 60s can't relate or relax in the company of their close-by father in assisted living w/o palliative care, who is hard of hearing. They can't even see to little details that mean a lot when one is dependent--broken eyeglasses, stuff organized, clean laundry, listening patiently in order to converse. My friend's out-of-state youngest handles those elements and enjoys overnights with her dad at his place, duo day trips with picnics, letter-writing sessions, picnics, lots of laughter, facilitated phone calls & visits from his 92-yr-old out-of-state buddy, shared fantasies of escape back to family's off-the-grid cabin, long sold to support his needs. It's a matter of one adult child relating to the very aged father as a whole person, living with him in the moment and relishing their shared present-day experiences while the siblings can barely be in the same room with him due to their self-isolating feelings of fear, shame, guilt, embarrassment, self-pity.

On LinkedIn.com, Palm prefaced the link to her piece for 2019 Father's Day this way: "The most important job I ever will have had was caring for both of my parents. In time for Father's Day, I wrote a bit about this for The New York Times."

"... I can’t walk. ... my condition is temporary — I fractured my ankle on an ill-advised descent down an icy hill on cross-country skis, landing me with a space-age boot and crutches...[Like my old father] I, too, live by myself. And, at present, I am not nearly as determined to leave the house as my father was — perhaps because I know I will eventually be able to do so on two steady feet. Also, I’ve already fallen on my face on the wet tile of a tire store. Not that staying in is much easier. I also fell on the wet tile of my own kitchen.

"I cannot independently procure food, nor cook it. The dog I inherited when my father could no longer care for him has protested my lack of attention by eating household objects, a fact I learned when he vomited on the stairs in the middle of the night. So I simply accept rides to and from work, where the bathroom door is heavy but the handicap stall and non-slip floors a relief — and then come home to elevate my foot and eat meals friends have prepared for me. My wardrobe is built around socks with treads and sweaters with patch pockets, much as my father’s depended on pre-tied tennis shoes and cargo pants.

"To wash my small cadre of functional outfits, I toss the clothes in a knotted plastic bag down to the basement, where the washing machine is, then follow on one foot, my weight on the dual railings I had installed for my [old] father. I hoist myself back up the stairs on my knees and ask the next visitor to retrieve the clothes for me — another trick my dad passed on.

"On a weekend morning, I woke up relieved to put on sweatpants and spend the day at home. I had boarded the dog, freeing me from the challenges of lifting his food bowl off the floor or opening the sliding back door to let him out.

"I’d left my computer strategically placed on the couch and set up a breakfast station in the kitchen, next to the refrigerator, which I could roll to in an office chair. I strapped on my backpack filled with water, books, ice pack, phone and prescriptions. I hobbled over to the hall closet and grabbed [my dad's] pill splitter...put it in my sweater pocket and hopped down the stairs, ready to start my day."

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