Loads of Juicers are caregivers, taking care of humans (kids, elders, the ill / frail), and/or furkids and other kids (feather, fins, scales, etc.). Caregiving is one of the hardest, least recognized, and least supported (financially and otherwise) jobs. But it’s also one of the most needed and (sometimes) rewarding. So I thought we’d try a thread just for caregivers and caregiving. (Sunday morning after the garden thread seems right, and please let me know your thoughts about the idea, timing, etc. Shall we repeat?)
Feel to share your story, including the difficult parts. And also feel free to post questions, needs, etc., that the commentariat may be able to help with. Let’s also make this a thread on self-care. Along with the fact that caregivers may need it even more than non-caregivers and yet are often reluctant to provide it for themselves, self-care, as poet Audre Lord noted, “Is not self-indulgence, it is self-preservation, and that is an act of political warfare.”
I’m going to dedicate this thread to my late, lamented Petey. He died almost exactly a year ago, and here is his obit:
RIP Petey Rettig-Tobochnik, 2002? – December 18, 2015
Yesterday we had to euthanize our beloved Petey–a.k.a., Pete the Sweet, Peteypie, SuperPete, and Petes. He had a colorful life with much pain but also much love, and he cheated death several times. His early life is a mystery, but in 2013 he was found severely injured on the streets of Kalamazoo after having been hit by a car. Although he normally would have been euthanized, the Animal Control Officer was so impressed by his sweet nature even under extreme duress that she got the folks at Kalamazoo Animal Rescue involved. He was fostered by the wonderful Dusty Reeds, a true general in James Herriot’s Army of Compassion*, who has fostered dozens of dogs and cats. And we adopted him in spring of 2014.
During his nearly 2 years with us, Petey weathered multiple ailments, two difficult surgeries, and a neuro condition that eventually immobilized him, all with incredible grace, humor, and sweetness. He loved his food–a lot–and two days before the end, could still use his outstanding foghorn bark to defend it against the predations of his opportunistic brother Billy (a.k.a., Chucklehead). But most of all, Petey loved human contact, and he loved love. He was a great snuggler, a great soul, and an overall exemplary member of the canine tribe. He will be missed.
*”I had often thought when I encountered cruelty and neglect that there was a whole army of people who did these unspeakable things, a great, unheeding horde who never spared a thought for the feelings of the helpless creatures who depended on them. It was frightening in a way, but thank heavens there was another army ranged on the other side, an army who fought for the animals with everything they had – with their energy, their time, their money.” – James Herriot
If you have a loved one you’d like to memorialize in a future Caregivers thread, please email me the details (and photo, if you wish).
rikyrah
My mother lived with me for the last 6 years of her life. It was fine until the last 6 months, when she was no longer self sufficient. Those times were hard. Didn’t work during that time, but I promised her, no nursing home. And, I kept that promise.
Hillary Rettig
@rikyrah: Thanks for sharing (and starting the new thread). You did good by your mom! If you don’t my asking, what was the hardest part about the last six months?
FYI, we haven’t been able to keep my mom out of a home, although the one she’s in is good. She’s 91! And still pretty sharp mentally but can’t get around physically. We kept her in her own apartment for many years but it was costing thousands a month out-of-pocket in aides and it was getting hard to even find good / reliable nurse’s aides. (As people probably know, once you’re in a home Medicare pays for the aides, and the home, of course, hires them.)
Also, Hurricane Sandy happened – fortunately one of her aides stayed with her during the storm out of the goodness of her heart – but if she hadn’t who knows what would have happened? That was a major impetus for getting her in an institution.
Pogonip
I would like to praise my son, largely the one who kept his grandmother, who had vascular dementia, home till her last week. It was tremendously hard work.
Hillary Rettig
@Pogonip: You raised a good one.
Mathguy
We have a wonderful rescue dog, Bella, a tiny Italian Greyhound that was used (and abused) as a puppy mill breeder. She came to us with only her four canines and a bad heart murmur. She gave us eight and a half wonderful years of companionship, but the last year was tough for her–10 pills a day, incontinence from the Lasix, cataracts, deafness, digestive issues…finally the CHF got to be too much for her in October. It was strange for a week after we euthanized her, because we did not realize how much we had structured our lives around her care. All worth it for a wonderful 7 pound dog.
Tarragon
My mother was diagnosed with pancreatic cancer and passed pretty quickly from it. We got into a home hospice program that helped tremendously. They set us up with a hospital bed and multiple visiting nurses. Even counseling after she passed.
She passed in our spare room while I was reading Ray Bradbury to her. Still can’t quite pick up that book anymore.
Hillary Rettig
@Mathguy: I’m so sorry for your loss. It’s funny the way you specified her weight. I’ve done that, too. (“I just spent $100 per pound on you at the animal hospital, dog.”) I guess it kind of is nonintuitive.
A pharmacist told me years ago that people who would nickel and dime every expense on their own drug copay would just throw money at him for their companion animals’ drugs, sparing no expense.
Thanks for sharing your story.
Hillary Rettig
@Tarragon: I’m so sorry about your mom, but what a wonderful book to send her out with. And hospice workers are some of the most wonderful and important people on the planet.
opiejeanne
@rikyrah: My dad did that with Mom, then my sister did that with Dad. I helped a lot and tried to get them to live with us but they wouldn’t. He and then she did so much for them that I am grateful for.
Hillary Rettig
Thanks to everyone who posted / shared. I’m going to have to leave the thread now, but will check in later.
Baud
@rikyrah: My mom refused to give up her independence. Luckily, she died suddenly and quickly.
cynthia ackerman
I have a great cat rescue story I’ll share another time — squashed kitten I gave up for dead, who went another fourteen years (RIP Kilo, 1993 – 2007).
The enduring fact for me is the caretaking went both ways, and more than I realize he took care of me.
LAC
I am in year two with my mother, who has alzheimers. There are good day and really bad days. My father, who is 92 years old, is a difficult man. He remembers all of his medication but is unable to help.with the medication my mother needs. ” I tell her to take it” is his famous saying now. But as I try to tell him, she needs to talked through it or she will put them down somewhere. So , on top of a demanding job, we have to go over regularly to make sure that she is taking her meds. My father is worth a thread on narcissism, but I will leave it at that.
On the bad days, I miss having conversations with her that do not turn into repetitious loops.I miss my mom. I thank goodness for my terrific husband . He is a buffer when needed and a devoted son in law.
I go to talk to a professional but some days I just cry. Then I feel guilty. I know that we were right to move them close to us but it definitely a challenge with doctors appointments, financial fixes (father’s bad decisions) etc.
Thank you for this thread. My apologies for rambling.
Another Scott
@LAC: Helping to take care of oldsters is hard.
J’s parents lived with us for 5+ years. Her mom had Parkinson’s and Alzheimer’s, and her dad had a feeding tube and a trache tube. We both work full-time, so we had to get help eventually. We were able to afford to have an in-home aid with us for the last 3-4 years (including an overnight shift), but it was hard to have strangers in the house overnight, and J is a light sleeper and would always wake up if there was an issue even with the aid here.
Do what you can, but get help if you need it. Investigate your options for having them move into more appropriate facilities when you can – it’s hard to do that in a rush if you need to. :-(
Hang in there. Don’t feel guilty that you can’t do it all on your own – nobody can. Just do the best you can, but remember that you have to come first.
Cheers,
Scott.
Pogonip
@Hillary Rettig: Thank you! He’s got brain damage himself but rose to the occasion magnificently.
Pogonip
@Hillary Rettig: P.S. Do you have kids?
RSA
@LAC, @Another Scott: Best wishes for the future, LAC.
Some long-time commenters know that I was the primary caregiver for my wife for several years, when her dementia appeared and worsened. I wrote an essay about it a few years ago, after I’d moved us into a retirement home. That didn’t work out. We went back to our old house (and back to a visiting professional caregiver for the time I was at work) after just three months. This past summer I couldn’t keep it going any longer and moved my wife into an assisted living facility.
It was a terribly difficult decision. I feel guilt and sadness, even after six months, and it will probably never go away. Aside from the emotional stress, the physical challenges, the isolation, and all the rest, Alzheimer’s caregivers come face to face with ethical dilemmas that aren’t very well understood by anyone. I’ll give an example (aside from the obvious one of breaking a promise to my wife that we’d always be together): Her mother died this past spring. How do you tell someone about an important event in their life, one that may cause pain, but that they won’t remember the next day? Do you tell them at all?
Trying to do the best for someone else is hard, but you can do it.
cmorenc
I am at a really difficult point with my 95 year-old mother, who was hospitalized last Saturday night bc she was throwing up coffee-ground emesis (that’s brown, turgid blood in lay terms), despite having been taking oral protonics after a more severe intestinal bleed 3 1/2 years ago which nearly killed her then. She has been living on the assisted-living floor of a retirement home for the last several years, and using a walker for the last 5 or 6 years, but her strength and mobility were becoming increasingly precarious even before the current incident. Although the docs seem to have successfully controlled the latest incident, when she gets out of the hospital (prob Monday or Tue), she has weakened to the point she will be mostly bedridden going forward, and the facility won’t take her back unless we provide 24/7 CNA coverage @$20/hour, which on top of the $3.5K /mo. rent (includes meals) would break her remaining finances in 3 to 4 months, if she lives that long, with the result that she will be effectively broke and have to go to a nursing home willing to take her on Medicaid. We do have a hospice agency (though not one with their own facility) helping us to find an alternative, more affordable facility, but we haven’t found anything yet.
Although she is not completely out of it, she has considerable dementia and is 90% deaf, and as her health-care power of attorney made the difficult decision a couple of days ago to cut off any more IVs, injections, etc. – everything but meds/treatments to relieve discomfort. She could die tomorrow, or it could take 4-6 months, and though she does have some very minimal quality of life (as opposed to the zero of a comatose patient), frankly I am hoping the end comes very soon rather than dragging on long enough that her end comes in an alien urine-stinking nursing home (albeit she is now substantially incontinent herself, and wears diapers and would be a net contributor to that atmosphere) instead of her familiar 1br apartment at her current facility. My wife has been great in helping with her, but I am extremely stressed over this, and trying to expunge guilt trips over being unable to avoid wishing we’d let the end come last weekend by limiting treatment to purely palliative care then.
I did finally pre-arrange her funeral on Thursday at at the funeral home on the cemetery where her late husband, father and mother, sister, and brother-in-law are all buried – she will be cremated, and my brother and I will bury her ourselves as part of the graveside service (as we did for our father years ago). The one bit of hilarious levity was in the conference room of the funeral home, where I sat with the funeral director at a table with a 60-inch computer monitor on the wall where we dynamically built the arrangement contract piece-by-piece as we went along from drop-down menus. The first one was: “How did the person arranging the funeral come to us?” The choice the director selected for me was: “walk-in: cremation“, which when I started giggling considerably lightened the mood and difficulty (when he saw me crack up, the director relaxed and allowed himself to smile at this too – he didn’t design the program). The obvious purpose was to facilitate tracking how the funeral home got referrals, and it probably would have been even more over the top to include a menu selection: “recommendations from other dead people“, which was actually fairly close to why I had come there. Never thought I’d walk out of the funeral home from pre-arranging my mother’s not-far-off funeral – giggling, but there I was.
Emerald
I took care of my dad for 10 years when he was diagnosed with Parkinson’s. I was happy to do it, and would do it again in a heartbeat, because he was my dad. My dad was a fantastic guy! I did a good job too. He made it to 94!
However, I was an unpaid family caregiver for all that time. Because of that, I couldn’t get any kind of health insurance. The ACA literally saved my life. I signed onto it the night it came out, chose Kaiser, and the first thing they did was find extremely early breast cancer.
Also, I gave up any chance of an actual retirement. However, I have the house now, and I’n making fairly good money doing Airbnb. I really enjoy it. So it all came out OK.
Of course, I’m on Medicare now, and the Republicans are determined to take that away from me. At least the house is paid for and it has a fireplace, so I can camp out here if I have to.
And I’d still do it all again.
Hillary Rettig
@cynthia ackerman: can’t wait to hear it, and ain’t that the truth (about caregiving going both ways).
Hillary Rettig
@Pogonip: i had foster kids from Sudan. Still close to two of them. They have a strong sense of family. I can’t guarantee they’ll be there for me if/when I’m elderly but I’m guessing they will. I didn’t foster with any sense of reciprocity in mind but it feels like a family.
One of my stepkids is a doctor of neurology, so that’s probably going to be useful (although hopefully not too soon).
PS – kudos on your kid for stepping up in spite of his own challenges.
Hillary Rettig
@LAC: omg don’t apologize. (and, seriously, you weren’t rambling). I wish you and your family well; you all would be in a very tough situation even without your dad’s complicating issues.
My experience has been that it’s the people who care and do most who also tend to feel the most guilty for not caring or doing more. I’m glad your family is so supportive, but wish our society offered better support and options. Besides the therapist (if that’s what you’re referring to) what else do you do in the realm of self-care?
hitchhiker
In 2001, just weeks after George W Bush was sworn into office, my 46-yr-old husband broke his neck. The original horrifying prognosis (no use of his hands, nothing working below the nipple line) gradually gave way to a more bearable reality. Very gradually.
My job during his 3 months in the hospital was to keep all of us afloat and prepare somehow for bringing him home. Him, me, our two middle-school-aged daughters, our dog, our cats, our house, the finances, the endless driving around, the bills — all mine to deal with. I had a small army of friends and relatives, thank fsm, but it was years before things settled out and became a new version of normal.
Caregiving for a new quadriplegic involves things like learning how to empty a leg bag and clean the tubing for a catheter. It involves doing nightly range of motion exercises with dead heavy limbs. Also tearing out all the carpet in your house and keeping wide pathways through every room, and — most difficult — watching while your funny, private, eccentric husband tries and fails to put on his own clothes.
So much of it was made worse by the knowledge that our kids were there, grieving and frightened — but also so much was made possible & necessary by their presence. I think if they hadn’t been there, we’d have collapsed in on ourselves. But I was just not going to let their lives get ruined, and that meant sparing nothing to find a way through.
I became the poster child for accepting help — everything from friends coming by to clean my refrigerator to family building ramps to the girls getting invited to other peoples’ vacations. Learning how to be endlessly gracious and grateful when part of me wanted nothing more than to hide and scream … that was caregiving.
Hillary Rettig
@Another Scott: Wonderful advice, thanks.
I guess one thing I would add is to get the help before you think you need it, so it’s in place for when you really do.
LAC
@Another Scott: Thank you, Scott for your encouraging words. We are looking at that down the road. My dad has been adamant about no one coming in. But, he will pass on and I will need use help while keeping my mom feeling safe in a loving environment. My sister would like to move down here when her marital mess clears up so that would be another source of help.
I really appreciate what you said.
laura
I wish I could have had my mother with me in her last years, but her dementia often presented in terrible delusions in which my dad and varyin family members were perceived as trying to kill her.
Moving them back from southern to northern California was a herculean task. Finding a care facility in Petaluma was as lucky as we could have gotten. My gratitude for the warm and tender care she received is gift I will never get over.
Dad spent 11 days in ICU two Thanksgiving ago, and sadly is back to project smoke myself to death. My brothers are roadies and so the care is entirely borne on my shoulders. So, when the shit got real, I did the one thing guaranteed to complicate life -we got Chet the weinie dog from the Front Street Shelter. Starved to the point of emaciation. Chet insists in the ever-present now. He loves us and we need him.
Making decisions about care for mom and dad came easy once I committed to two goals; will it maximize joy, or minimize suffering. Mom’s health failed with a fall and irreparable broken hip, but it was an infection that was the proximate cause of death. In her last years, I travelled with a really good folding chair for the days and hours of bedside sitting. I got a really good radio and set it to a jazz station for moms listening pleasure as she became bed ridden. We planned her funeral service over the last year and it was as she wished, simple and beautiful. Both brothers were able to be there and make it back to their last show of the American leg of a massive global tour.
I miss her so much. I’m drowning in a sea of grief and memories. We were as close as could be and I know I did my best, my very best and it still wasn’t enough.
I hope to have the court release me from my conservatorship in the New Year, and dad will be my focus as he approaches the end of life and I’ll keep doing my Union Business Agent work until Abood is overturned, and I’ll keep loving my husband and walking that Chet -the right bad dog, at the right bad time.
Hillary Rettig
@RSA: I look forward to reading your piece.
One thing that’s helped me (not just in the realm of caregiving) is the realization that in many cases – including the toughest and/or most important – there really is no clearcut right answer. You just do your best, and second-guessing afterwards is just useless. Even though the stakes are pretty high in this particular realm of life, I think that principle still applies.
We had so much trouble figuring out what to do with my dad, years back, and that was even with the help of our cousin, who is actually a comptroller IN a nursing home.
Your situation also reminds me a bit of the news about Sandra Day O’Conner, whose husband developed a relationship with another resident in his Alzheimer’s Ward (IIRC).
beth
Caring for our parents at the end of their lives is both the hardest and most rewarding thing we’ll ever do (probably what they said about raising us). I always think that showing me how much patience I am capable of was my mother’s final gift to me.
RSA
@Hillary Rettig:
This is my philosophy, too: You do your best, and no one can ask for more.
That is, people can ask for more, but the answer is already there: I’m doing the best I can.
LAC
@Hillary Rettig: Thank you this thread. I am trying to find down time to enjoy this things I love. I love to bake and cook, keep up with my friends, get some walks in. I have been MIA on news watching and am learning to say no to avoid being overwhelmed. Baby steps.
I am getting blurry eyed reading some of these posts. But it is a good thing to know that you are not alone.
Hillary Rettig
@cmorenc: I’m so sorry. You and your family are really in a difficult place. I don’t know you but urge you not to feel guilty. (As I noted above, in my experience, it’s always the best, most caring people who do.) It’s a difficult time, and society should absolutely offer better options for end-of-life caregiving than it does.
Glad you can maintain a sense of humor, which I expect helps you and everyone around you. I wish you and your family peace moving forward through this difficult time.
sweetgreensnowpea
no comment but
balloon juice needs “like”, “love” & retweet options…
Hillary Rettig
@Emerald: >He made it to 94!
Good work!
I know several people (women and men) who interrupted their careers for years to care for elderly parents, and who were never able to get their careers back. (Because the technology moved on or age discrimination or otherwise.) I’m glad AirBnB is working for you.
Thanks also for sharing your Obamacare story – I’m glad you got the help when you needed it – and will keep my fingers crossed for us all wrt health care moving forward.
HRA
I would like to give recognition to my daughter and her then 2 young teenage children for the care they gave to their husband and father through the almost 3 years of ALS. Bill’s disease took his voice first and then gradually his other abilities to function. My daughter went back to work a block from home at a close friend’s restaurant after the children came home from school and took over the care of their father. The rest of us would help as needed and it was hard for her to ask us. They live close to the Buffalo Bills stadium and I would show up with a cooked meal early in the morning to then park cars in their yard. Parking cars was Bill’s favorite day when he would have the garage ready for watching the game with old friends and neighbors. On one of those days I turned and looked up at the bedroom window to see Bill standing there alone. On another day after the cars were parked, I sat with Bill on the deck talking to him. He would nod, grin and clap in response. It was a time when most of all I wanted Bill to get well and had to face it would not happen. He died at home and we were all there to say goodbye. There are times now when someone will reminisce of how Bill would call us “Darlin” in that southern brawl of his. If you remember the Brawny red haired towel man on the package, it was absolutely Bill even with the clothes. Have a good day everyone!
Hillary Rettig
@hitchhiker: humbled. just humbled. both by your own response to adversity, your willingness to share, and the way your community stepped up.
>I became the poster child for accepting help — everything from friends coming by to clean my refrigerator to family building ramps to the girls getting invited to other peoples’ vacations. Learning how to be endlessly gracious and grateful when part of me wanted nothing more than to hide and scream … that was caregiving.
Tazj
I’m out so I will be brief. I took care of my dad who was ill with cancer, while working nights as a nurse. My mom worked during the day. I also took care of my mom with my sisters until her death this year. I was going back and forth with my kids most days. You have to take care of yourself or you will get burned out. I know from sad experience.
Yarrow
@RSA: I remember your piece. Lovely and heartbreaking. Sometimes there are no good options, just choices between not good ones. It’s hard.
Emerald
@Hillary Rettig:
I was a university professor of Reading Education (the pay for that is on par with secretarial work and that’s with the PhD). You can’t leave that field for ten years, especially after age 50, and go back. And trust me, Airbnb pays better than adjunct professering (I’ve had adjunct profs staying here).
Nah, I’d happily do it all again. I couldn’t leave the house except for a couple of hours a week to do the shopping (my sis drove down every week so I could get out), but I kinda needed a break from the world.
Now, of course, most of the Airbnb money is going to dig out of the very deep financial hole all of that time off created (we lived on Dad’s SoS—but he had been self-employed so got double). I’m still repairing the house with all this lovely new money, but once that’s done I might have some breathing room to save a bit!
Because yeah, there is no financial help available. I did get a bit of “respite care” from a volunteer who came to my house in the last year, but she could only come on Sunday evenings so there wasn’t all that much I could really do. Still, I got out to the beach to watch the sunset, and that was nice.
The alternative was putting him somewhere and we would have lost the house eventually over it, and I didn’t want him in one of those places anyway. So it was the right choice.
And hey, I found Balloon Juice during that period, so it was all good!
Prescott Cactus
Any rough times you experience during caregiving is paid back to you later with peace.
Hillary Rettig
@laura: Another humbling comment. Thanks for sharing your family’s experiences, and also some of your solutions.
I think your post is a great example of what the late Harvey Pekar meant when he said “Ordinary life is really complex stuff.” Even seemingly small stuff – your folding chair, the radio station – can make such a big difference. I’ll try to remember that when helping people in my own life.
Chet’s also a small thing, but I’m sure he’s a giant in the world and (like most wiener dogs I’ve encountered) in his own mind. Give him a smooch for me. (And Chet = EXCELLENT dog name.)
Hillary Rettig
Hi Everyone – I need to leave the thread for a bit, but will check in later.
Would people like a regular thread like this? And if so, monthly, weekly, or some other frequency?
Lizzy L
I was caregiver for my mother for 11 years. The last 8 of them she lived in an assisted living facility. She was an insulin-taking diabetic, a brittle diabetic, so there were always emergencies. I did not having to prepare her meals or clean her apartment or help her dress, but I did her finances, coordinated her extremely complicated medical care (at the end she had four or five different doctors, none of whom would talk to each other), drove her to appointments, and visited her every day. 3 years before she died she broke her hip, and never exited her wheelchair. Things were pretty much downhill from there. The women in my family live long lives even with heavy duty illnesses (we are strong) so she lived to be 87. The last year was brutal: constant care, multiple hospitalizations. Hospice did not help much; they were not even there when she died — on Christmas Day 2006, 10 years ago.
I am now caregiver for a disabled friend, a woman younger than I, with multiple serious medical issues. Her only family is a disabled sister who lives in Seattle, so I am pretty much her only support. As with my mother, I manage her finances, drive her to her multiple doctors’ appointments, I also shop for her. Most recently, she has been diagnosed with a slow growing brain tumor. They are talking surgery. She lives in the same assisted living facility that my mother lived in. Life is strange sometimes.
LAC
@Hillary Rettig: hands raised
ArchTeryx
In a way, this is a strange thread to me. I really have no ability to caregive…I am a couch crasher in a friend’s house in a blue state. My surviving parent is in a red state. There’s no chance of me being able to take her in or even move out there…no Medicaid, your friendly neighborhood dinobird promptly goes extinct.
If we lived in a civilized country, I wouldn’t have to face the imminent reality of putting her in an institution and selling her house, but we’ve talked and that’s likely the best and only option, were she to becom infirm.
Hoping that your own mother dies quickly when her time comes is pretty damn bleak, especially when she wishes the same thing, but that is the country we live in.
Those that DO have the luxury of being caregivers have my undying admiration, but in a weird way, having that luxury is itself a form of privilege, even if it feels anything but.
hitchhiker
Adding my thanks for this thread. You all are lovely, lovely humans.
ArchTeryx
To add…I hardly think of caregiving as an actual luxury. Quite the opposite…caregivers often take a huge hit to social security earnings, often times lose things like health insurance, and that’s not going into the time or emotional costs.
The country is just as hostile toward caregivers as it is toward folks like me, too poor to caregive. That is what I see as the real problem, and why threads like this are so important…to remind you you are not alone.
Shell
Yes I think this is a really important thread. Caregiving is often such a isolating, lonely thing, its good to have as many outlets as possible to talk and share.
Right now, Im caring for my 94 year old mother. Im slightly disabled myself, so Ive had to have 24 hour help to cope, but Im not sure how long I can afford it.She has dementia and is pretty much bed-ridden. She’s been like this for over a year. We’re trying to get her approved for Medicaid. I always promised her Id never put her in a nursing home, but I may not have any choice. Its very, very depressing.
Mary G
You’re all my heroes.
hitchhiker
Do any of you think of how to arrange your own final years? My husband’s parents are now in their late 80s and living in a (very posh) extended care facility. Recently his dad had to be moved into the memory care ward, where he is alone and mostly confused about what’s happening and why he can’t go back to his apartment where his wife is. She also seems unable to grok that he’s never going to live with her again.
We’re across the country & making trips to see them every few months. Watching this from afar, I can’t help thinking of what I want to happen when it’s my turn. My mom died at 90 last summer & I know her biggest fear was that she would “be a burden.”
The framing is wrong, obviously. But what’s a better way to think of it?
cope
My wife was diagnosed with non-alcoholic cirrhosis in September. She has lost muscle mass and energy and needs somebody to be with her at all times. Her sister is here while I am at work and I take over when I get home. We are trying to get her on the transplant list but this has involved multiple trips to a hospital 2 plus hours away. We are hopeful that this Tuesday will be the final visit that will get her on the list.
I am not sure what awaits us if (and when) she gets a new liver but we will just take it as it comes. What is most ironic is that she was an RN for 3 decades and always the person who took care of others. It hurts to see her in such need herself. That is probably more difficult for me to deal with than any actually physical acts I do to help her.
Hillary Rettig
@RSA: I read and loved your piece. (I think I remember reading it when it first came out.) Thanks for reposting the link.
Ben Cisco (onboard the Defiant)
Mrs. C was disabled. It developed over the years and was a particularly intractable issue (brain chemistry) to address. Turned a corner in 2010, and we had some good years, until last year when back issues started us on the path we were on until earlier this year…
This is more about her, though. She never gave up fighting, she merely ran out of time…
divF
This is to Madame divF, a geriatric and palliative care physician for the last 25 years, and to all of her colleagues (doctors and nurses) who follow this calling. It is a tough, demanding balancing act, knowing when to treat for recovery, and when to let go and provide comfort care only. Plus helping families understand and deal with the process.
Madame is doing this right now, as the oldest daughter of her 88 year-old mother, who was hospitalized a little over a week ago with respiratory problems. My MIL is in a hospital 90 min away from here. It looks like this is a case where she will recover, but it is still touch and go. Madame has been a loving daughter and a tactful colleague – organizing and keeping her family informed and engaged, and bringing the hospitalists along regarding the way to assess and treat a geriatric patient while still respecting their professional boundaries. Plus, of course, helping her mother understand the path ahead.
Another Scott
@RSA: Thanks for posting your NYTimes piece again. It is quite moving and well worth reading again.
One thing that I learned from having J’s folks with us for so long is – no matter what you do, you can’t protect them from everything. Once J’s father got up out of a recliner and fell and broke a couple of ribs on the edge of the coffee table. We were not 3 feet from him at the time… (He was on some medication that slightly lowered his blood pressure and he basically fainted after getting up.) Even if you’re right there, something bad can happen at any time. Even something as simple as taking medication or taking a drink of water can end up being fatal if someone has swallowing problems or is too weak to cough…
It’s hard for many reasons, but there’s only so much anyone can do, no matter how much we desperately wish it was otherwise.
Hang in there, everyone!
Cheers,
Scott.
Larkspur
@hitchhiker: I’ve been thinking about that a lot. I suspect that for me, at some point I’ll have to choose suicide. But I don’t want to check out earlier than necessary, but what if I wait too long and cannot physically do it myself? I’ve never been married and I don’t have children, and I didn’t manage to earn enough to ensure care. My parents and grandparents lived well into their 80s and 90s, so I will be facing some difficult situations, absent a meteor or an out-of-control semi There are going to be a lot of us, which is why I always support school bonds and kid-related things. But I think masses of boomers are going to have to figure out lower-cost dormitory-style housing and care facilities in which we help each other as much as we can. In the mean time, I’m working on the health care directives and the POLST forms so I can be sure that health care providers will know enough to spare me months on ventilators and shit.
Hillary Rettig
@LAC: >I am getting blurry eyed reading some of these posts. But it is a good thing to know that you are not alone.
I don’t know quite what I expected, but yes, this thread has been amazing. And you are not alone. ((hugs))
geg6
My older sister deserves the kudos for taking care of my mom the last two years of her life. Mom had had three bouts with breast cancer over her life and the third time, it spread to her bones and broke her neck permanently. She could still walk, if gingerly, but had to wear a neck brace 24/7 to hold her head steady. Daddy was her primary caretaker for two years until he had a massive heart attack and died shoveling snow at halftime during a Steeler game on January 2, 1999. My sister, who managed a restaurant, had work hours that made her more flexible than the rest of us took charge and really did it all. Cooking, cleaning, lawn and gardening, doctor appointments and chemo treatments–just everything. We all helped but she did all the heavy lifting. The last year, we had a wonderful hospice worker who came to the house every day. He was the best thing that ever happened to us (when she passed, he was more choked up than we were–we were more relieved and had done most of our grieving already). In January 2001, we finally (we kids, Chris the hospice worker and my mom) decided that she had to go to a facility. We managed to find one that, in a stroke of good luck, had hired a former student of mine and my younger sister as a nurse and she turned out to be assigned to my mom. About two weeks in, she called each of us kids and Chris and asked us to please drop by some time on that Saturday so we could all free up Sunday for the Super Bowl. She did not tell us that she had asked all of us to do this. We each dropped by that Saturday and had a great conversation with her. The next morning, my former student went in to ask what she wanted for breakfast, mom told her and made a point to thank her for everything she did for her. When Phyllis came back to her room, mom was gone. We had hop d she’d hang on until my younger sister’s daughter was born in June (a very fraught pregnancy in the end that turned out well). But by the time that September rolled around, we were glad she wasn’t around to see her country be attacked for the second time in her life and this time with a president she despised, not admired.
StringOnAStick
My BIL took on the task of caretaking his and my husband’s widower father over 25 years ago, and I only recently found out that happened when he had to bail their dad out of DUI jail; he moved in immediately thereafter to keep an eye on him. What started out as two quirky bachelors living together turned into full time caretaking of a crotchety, curmudgeonly and difficult man with creeping senility, and then my BIL was diagnosed with a very rare and hopeless form of cancer 4 years ago. My husband did many trips to MI to help deal with health crises of both his dad and brother, and we paid for as much extra help as we could. It was a sad blessing when their dad had a serious enough stroke that he had to go to a nursing home because his care needs were so draining for my BIL as his bouts with cancer got worse. Through it all though, my BIL did his best to keep their dad at home and truly structured his life to his dad’s needs and not his own health needs. He was absolutely devoted, even to his own detriment.
My FIL died late this May right after we visited; we all say it was a blessing he died when he did because my BIL had kept his cancer news from their dad but it was growing very difficult to do so. My husband prayed that his brother would get at least a good year of life without the incredible demands of their father controlling his every action, but he only got a few months of awful chemo before he passed in October, just a few weeks after his 56th birthday. He and his dad had a very complicated relationship and the fuss-fests those two could get into were epic but the were completely devoted to each other; interestingly they both passed at the exact same time of day.
My FIL’s passing was a relief to everyone; he hated being in a home, hated that he could’t walk, hated just about everything because he could no longer control his life. Mostly it was a relief just because it gave my BIL a little breathing room from his dad’s thankless demands. My BIL’s dying was not unexpected at some point; we just hoped he’d get more quality time. We did more to help than most people can with relatives who live far away because my husband has job flexibility and an excellent boss but you still end up feeling like you didn’t do enough.
rikyrah
@Hillary Rettig:
She needed a lot a care. I couldn’t leave her alone. Up until then, she was fine while I was at work. But, her physical health deteriorated to that she needed around the clock care.
divF
@divF: One more thing, that I did not make clear: Madame sees one of her most important jobs as giving patients (if they are cognitively intact) or families (if they are not) the information they need in a form that they can use to make informed decisions. She is doing that with her mother right now.
StringOnAStick
It is the coming onslaught of Boomers hitting nursing home age that has the various anti-society types wanting to voucherize Medicare and gut Medicaid; our creaky, cobbled together system of for-profit health care and declining safety net has those guys looking at the future bills and thus making this desperate run to destroy these programs now, now, now. A country that had caring for everyone fairly as a core moral value would be having an entirely different discussion than we are.. It is a privilege to live in this country, and the wealthy became that way because of the workers, resources, and government that exist here; they can afford to pay higher taxes.
raven
My mom’s third husband had Progressive supranuclear palsy (PSP), an awful disease that left him physically shot but fairly lucid mentally. She stuck with him till the end but the “caregiving” cost her , in my opinion, 10 years of her own life. I don’t think anyone really knew how awful it was for her, most of all me who lives 2000 miles away. The one thing I realized was that when I was in LA she would do anything she could to get away from him for just a short time. It sucked.
raven
@StringOnAStick: We’ve had long term heart care insurance for abut 10 year. We don’t have kids so we figured maybe it would help.
raven
@raven: health
raven
I knew I’d kill this thread.
Larkspur
@raven: I have an acquaintance whose husband has PSP. It really is awful. The danger of falling has been the biggest hazard, but he is also unable to communicate very well. Friends of theirs think that he is “present” psychologically, but is physically unable to interact, kind of a “locked-in” syndrome. So far his wife has been very resistant to anyone offering respite care for her. I can’t imagine the toll it’s taking on her.
Larkspur
@raven: No, I am the thread killer. It’s like a personal tradition for me. I don’t mind it because sometimes I think I do my best work at the dead end of a dead thread.
PS: I knew what you meant. I wouldn’t imagine the heart care specialists looking at, say, the gangrene in your foot, and telling the staff to move along, nothing to see. Because eventually it’s gonna bother your heart. But thank you for reminding me to do another thing I have put off doing: long term heart etc. insurance.
RSA
@Another Scott:
Oh, no! But I’ve been in similar situations, and I know exactly what you mean. A sense of helplessness, even despair, can sometimes come to the surface, even when you’re doing everything you can. Taking a step back to get perspective, to understand that bad things can just happen, is hard.
I’m reminded of one morning a couple of years ago. I’d gotten up from the table to refill a glass, and behind me I heard my wife say, “Sometimes I wish, like Zap!, things would go back to the way they were.” (She was still talking at that point.) When I turned around, she was looking at her lap. She’d dropped half of her muffin and scattered crumbs all over. I gave her a hug. I said, “So do I, sweetie.” Then I cleaned up, putting things back the way they were.
Some things you can’t put back, though. That’s a sad thought, but I suspect the caregivers here will find it a familiar one. You just move forward and find what happiness you can.
Central Planning
I was able to be an elf at a local hospital and let them talk to Santa via an iPad (my company funds the HW and Santa and gives us the time to do this)
We would prep Santa with info about the kids, name, what they wanted, other family members. He would say hi with their name, chat with them for a little, check his list and say “it says here you want a remote control truck”. The awe and amazement in their faces was precious and priceless. Hopefully it made their time in the hospital a little more enjoyable. I can’t wait to do it next year
Aleta
I couldn’t make the trip to my mother’s, living alone, as often as I felt the need to. To make that better for myself, I would do things for two neighbors, both in their 80s and 90s, who were determined to stay in their homes as long as they could. I mostly just told them, whenever they talked about their efforts to stay capable and strong so they could take care of themselves, that I wanted them in the neighborhood too. So to please call when they needed a ride to the drs or anything else that would help them stay independent. I knew there were neighbors who looked in on my mom sometimes, and thinking of the symmetry helped me.
Aleta
@raven: When is a good time to start up long term hearty health care insurance? Do you recommend your company — does one get it from a separate company ?
fuckwit
@Aleta: There was a project in Japan to monetize exactly that, but with a trading system. It was some kind of credits you could earn by taking care of old people in your neighborhood, and you could spend them by trading them to young people near your parents to take care of them.
Larkspur
@Aleta: That’s wonderful, Aleta, and yes, there’s a beautiful symmetry.
fuckwit
@ArchTeryx: Sad, but Grayson nailed it a few years ago: https://www.youtube.com/watch?v=-usmvYOPfco
Another Scott
@Aleta: J’s mother has a LTC policy through John Hancock. We were very lucky to get it – she was already showing signs of Alzheimer’s when we signed up for the policy, but the evaluator apparently didn’t catch them or didn’t think they were severe enough to deny the policy. We were able to put off starting the claims for a couple of more years.
J’s sister’s company had a benefit where they would pay up to $5k (IIRC) toward a LTC policy for parents. That helped a great deal in getting the policy as well. That may have been the reason why we ended up with a JH policy – I don’t recall the details.
One thing I didn’t know until we got in the weeds of these things – the policies (or at least the one she had) only pays benefits for a maximum of 3 years. You’ll need to plan carefully and you’ll not know at the time if you’re starting the claim too early or too late. And it’s amazing how quickly a $200/day benefit is eaten up. Sign up for the largest daily benefit you can afford – you’ll need it. In our case, the money mostly paid for the in-home aids, etc., and once that was gone we couldn’t afford to keep them at home any longer (and J’s mother was becoming too much of a handful for one aid to handle on her own (due to the Parkinson’s stiffness) so we would have needed two at a time by then).
LTC insurance is a great help, but understand its limitations.
HTH a little. Good luck!
Cheers,
Scott.
raven
@Larkspur: It was fucking awful. The dude’s kids were useless so my mom, sis and my sis’s kids did almost all of the care. The only poetic justice was that my mom got his estate and she didn’t give a dime to his kids. The worse thing about that is that mom left her LA condo to my sis, my sis froze and wouldn’t sell it and the market crashed and she lost about 75%.
raven
@Another Scott: That is very true, and we were probably lucky to get it at all. We have Genworth and I think they are one of the few still offering it.
Another Scott
@raven: There’s still a decent LTC program for federal employees. Though it’s apparently self-funded via premiums, who knows what Donnie’s minions will do to it.
LTCFeds.
The site seems to have lots of good information for people thinking about such things (even if they don’t work for Uncle Sam).
Cheers,
Scott.
raven
@Another Scott: Well since he’s gonna “take care of da vetrans” I’ll be in fat city either way. . . right?
Another Scott
@raven: Of course! “Believe me!”
:-/
Hang in there.
Cheers,
Scott.
Hillary Rettig
@Lizzy L: {{hugs}} and life really is filled with weird coincidences
Hillary Rettig
@ArchTeryx: agree with your comment (esp. the part about how we’re not in a civilized country, eldercare wise and perhaps otherwise) 1000%.
>Those that DO have the luxury of being caregivers have my undying admiration, but in a weird way, having that luxury is itself a form of privilege, even if it feels anything but.
I think that’s a valid point, too. I’m sorry it has to be this way.
Hillary Rettig
@Shell: Best to you, Shell, in a difficult time. As discussed elsewhere on this thread, we can all only do our best. RSA’s NY Times piece may provide some comfort.
Hillary Rettig
@hitchhiker: I’ve never understood the big deal made about “not being a burden.” Sure, you don’t want to be one – and you also don’t want to live uncomfortably on the margins of someone’s life – but a lot of people quote that as a kind of dogma when it’s not actually going to happen. Probably a blind spot of mine…
I was searching for the person who talked about the importance of asking for, and accepting, help as a good role model for us all — but it was you! :-)
I don’t know if you were an actual hitchhiker – I was, in my 20s. I loved asking for help then, and still love it. I’m sure I’m naive about the realities of aging & infirmity, but hopefully I’ll be able to tolerate it okay when it comes. (I’m 58 btw, so seeing it in the prior generation.)
Hillary Rettig
@cope: Wow. As someone who loves someone with cirrhosis – who almost died from it – and also as a living kidney donor I wish your wife the best. My understanding is that the liver is pretty resilient. We are all rooting for you both, and I hope you will keep us posted.
Hillary Rettig
@Ben Cisco (onboard the Defiant): ::sigh:: and lots of love
not a big Heinlein fan but he was right, none of us has time enough for love
Hillary Rettig
@divF: the world is filled with heroes, kudos to Mrs. / Dr. divF!
Tazj
@StringOnAStick: Well said. It’s tragic that we can’t do more as a country to help out each other when our loved ones are sick or dying.
I was very fortunate to come from a big family and we could spell each other and share the burden, and I still struggled. My mom was able to take a leave of absence from work for 6 weeks before my dad died. My sister had to completely give up her job when my mom became bed-ridden. She’s still looking for fulltime work.
Nursing homes and health care aides are expensive and people need help and a break from caregiving.
I hope everyone can find peace and get the help they need.
Gravenstone
My mother was the caregiver for her own mother for several years. She essentially moved in with her (going home on weekends) but being there to coordinate her bills and meds and assorted day to day demands in life, around her own work schedule. Once her health deteriorated to the point where my mom was not longer to meet her physical needs (grandmother made the informed choice at 91 not to pursue treatment for renal failure), we had to place her in an in person hospice facility. But she refused even that until I came back to tour the facility (I live several states away) and give it my stamp of approval. I always felt that was basically her way of asking my permission to let go (she’d been a widow and alone for 20+ years). A bit over a month after entering hospice, she passed, after my mother had left from her daily visit.
Fast forward four months, and my mother was diagnosed with leukemia (day after Christmas, another reason to hate the season) – untreatable due to severely diminished cardiac capacity. And thus, I became her caregiver. The diagnosis came while I was visiting for the holidays, so I simply took FMLA and stayed there. We were able to arrange in home hospice care, which was wonderful. They provided us with a hospital bed, oxygen concentrator, visiting nurse coverage and an aide came in every couple of days to assist with bathing. My main focus was coordinating her meds, although she stubbornly refused the morphine because she didn’t want to feel “doped up”. The situation was complicated by her vocal chords being paralyzed by the illness, so she could only speak in whispers. This rather precluded a lot of conversations which should have taken place, because it was such a strain on her. Also, as her immune system crashed, she was wracked with shingles – which were horribly painful for her, and for which I could do nothing to alleviate that pain. Because she’d actually been ill for some months, she only lingered about six weeks. And I was holding her in my arms when her heart finally gave out.
Now, some 10 years later my stepfather is a two time cancer survivor, and dealing with some health issues likely attributable to the treatment for one of the cancers. He’s still active, although growing less so as he approaches 80. I don’t doubt that I’ll be reprising my role as caregiver at some point in the future. Really looking forward to his possibly losing Medicare (and of course if Medicaid goes away, I’ll be liquidating the family farm to pay for his care rather than trying to use it to give my nephew a step up in life). But it is what has to be done.
satby
What a great thread, talk about being surrounded by everyday heros! You all have my deep admiration, I know caregiving is a tough and often thankless job.
cmorenc
@Hillary Rettig:
Thank you, Hillary. Actually, my wife and I are feeling a bit better now that we’ve already pulled all our hair out there is to pull over this thing, i.e. we’ve already hit rock bottom and there’s nowhere this thing with my mom could possibly go at this point except up one way or another, at least a little bit.
Aleta
@Another Scott: Thanks for this information ! Best wishes to you.
jenn
Hugs and best wishes to all of you. This has been a beautiful (if pain-filled) thread. Thanks to everyone for sharing.