Thanks. It’s been hard on all of us. MIL is, and always has been, a person who sticks her head in the sand on almost every decision in her life. She avoids making a decision, even tries to pretend that something is not a problem when she knows it’s a really big problem. For example, it’s been at least 20 years since she went to a gynecologist for a pelvic exam. Colonoscopy? Never had one. Why? “What if they tell me I have cancer?”
Guess what, MIL? You have cancer.
We all very much want to respect her wishes, whatever those wishes are. It’s very frustrating to watch somebody you care about knowingly make so many foolish decisions again and again and again.
Yes, get the POA while still competent! You don’t have to activate it yet if things are still being handled appropriately. In absence of using POA be sure all her accounts have online access/paperless set up that you or family have passwords for. We never did that for my uncle and was a hassle when tried to change addresses for SS and Medicare since they don’t recognize POA.
@sbinaz if she is having chemo or other treatment, hospice is not an option yet, as you no doubt know.
My cousin is medically fragile and just had chemo and did pretty well.
Your MIL isn’t that old. KIdney disease is common and mostly symptomless unless her eGFR is in the 20’s-? Not sure how chemo goes for those with kidney disease.
It sounds like she needs better diabetes care. Type 1’s use pumps and CGM’s. Is she seeing an MD for blood sugars?
The discussion of hospice for a 78 year old with a new diagnosis of cancer is a little disturbing but I guess you will find out more info on treatability soon.
Wow on having a real crisis for your nuclear family due to DH’s mother.
My father had owned his own business, and had health issues - and mother was somewhat controlled bi-polar (her mother and my sister are both bi-polar, a definite biologic inherited issue). At the time, with the tax situation, dad had set up A/B trust, so when one of them died, their assets would be A/B until the other died and then trust dissolved and tax situation managed for inheritance. Mom would not sign the paperwork because she did not want to ‘lose control’.
Dad had cancer and was going fast. Brother from far away state showed up at airport a day before his arranged flight due to dad’s rapid decline (chaplain said every day my dad’s decline was like a month of a typical cancer patient). Brother immediately got on the attorneys to have everything up to date and brought to the hospital - and it was like, get going now, today. Brother in his way like our grandpa (mom’s dad) just told her she would lose no control and sign the papers. Dad was so weak they had him sign the important papers first. Literally one day before he died. After the papers are all signed, it takes some time for the trust to totally be put into place. A few months after dad died, mom drove out of town (something really beyond what she should have been doing), and in the sunny afternoon fell asleep behind the wheel and had a head on collision with a fully loaded 18 wheeler (the truck pulled left as she veered across his lane) – if someone was in the passenger seat, they would have been instantly killed. Her relaxed body somehow slumped down, so she had a broken right wrist (had been broken as a child), facial broken bones/surgery from impact of airbag and maybe steering wheel, but no other bodily injuries. Based on the sight of the vehicle, she was airlifted/helicopter. Had she died, the trust would not have been in effect.
So roller coaster drama. Mom lived 15 more years - although later dementia, she had a strong will to live in her own home, and was compliant in stages - and then in later life was docile and followed the household flow and had a little dog that was very loyal to her and perked her up (he was given my dad’s nickname).
So whoever has the influence for your MIL to get things properly put into place.
MIL has chosen to be without a PCP for the past 3 years. She does see an endocrinologist regularly. And has been counseled on how to use the insulin, but chooses to go the “easy route” and gives herself a set amount of insulin twice a day regardless of how high or low her blood sugar is. She’s had episodes where she wakes up in the middle of the night and her blood sugar is in the 50s. A couple of days before the hospitalization, her BFF took her to the ER and her blood sugar was 22! I’d be surprised if the endocrinologist hasn’t discussed an insulin pump with her, but whenever presented with anything that sounds or feels more complicated to her, she opts to go with what she perceives as the easy route.
Honestly, my MIL, in terms of her current physical condition, has the body of an 85-90 year old woman. She can barely walk. Also refuses to use a cane, walker, or wheelchair because “it makes me look old.” Has refused to use eyeglasses for years because “they make me look old.” Refuses to ask for clarification with doctors when she doesn’t understand something because “I don’t want to look stupid.” Refuses to tell DH or SIL what’s really going on because “I don’t want to look stupid.” I could go on and on.
No idea what her eGFR # is. She won’t tell DH or SIL any of that. And I doubt that she even understands what an eGFR # means.
It’s kind of like dealing with a stubborn 4 year old, but there’s truly nothing you can do about it. We’ve tried to reason with her for years about stuff and she refuses to listen.
** edited to add **
MIL also sees specialists in:
cardiology
kidney/nephrology
eye doctor/retina disease specialist
podiatrist
pulmonologist - because she has a CPAP machine.
There’s no coordination of care between all of the specialists. We’ve suggested that could be handled through a PCP. She refuses to see a PCP.
DH & SIL even tried 3 weeks ago( when we were all together for MIL’s birthday) to talk her into getting all of the estate legal stuff put together. Like she’s done for 10 years, she said, “I’ll think about it.” That’s at least better than all of the times she’s said, “You just want me to die so you can get rid of all of my stuff. Maybe I should just kill myself and get it over with.”
She doesn’t say that in my presence, though, because the first time she said that to me when my kids were 2 and 4 years old, I called her PCP’s office and left a message asking them to do a wellness check on her…not only did she make much more threatening statements saying she wanted to end her own life, but she all of a sudden stopped answering all of our calls and when my DH would go over to her house, she wouldn’t answer the door.
She was furious with me at the time, wouldn’t talk to me afterwards for a month and a half. Once we finally did get together (her, me, DH) to hash it out, she said, “You got me in trouble with my doctor!” I told her that based on her behavior at the time, for all WE knew, she maybe really meant it that time…and then I told her that the next time she said that in front of me, I’d be calling the police instead of her doctor.
Our #1 hope right now is that whatever it is she wants in terms of her care, that those wishes are respected. We have no idea yet if she actually wants chemo though. DH & SIL need her to be coherent so she can understand what the options are. the next couple of days will be tricky for sure.
The saying you can’t help those who refuse to help themselves.
Super hard when you have to pick up the pieces.
Sounds as if the diabetes’s non compliance is coming back to haunt her health in many ways. And the cancer is part of not taking care of going to the doctor.
My mother frequently like to talk about how she does not want to be a burden on anyone. How she has overstayed her welcome. How she doesn’t want to deal with being old and having medical issues. I can’t change her, but I do tell her that only God knows how long she will live. And that she might as well be in good shape because it makes things easier on her.
I think no going to the doctor and not taking care of one’s health isn’t that unusual. My ex sister in law, her mom has diabetes. She’s been in denial that it was an issue, she was different. She could eat her sweets. She only had to take insulin. Guess what? It’s come to fruition. All the complications. But she’s in her mid 80’s. Guess she lived her life on her terms.
As to the POA discussion, I had durable power of attorney for property and healthcare that was set up shortly after my dad died many years ago. It was effective from day one. I could have made decisions while my mom was still competent, but I did not use that power until she could no longer make decisions. She was fiercely independent and I didn’t want to strain our relationship, especially in the early years of her living with me.
One thing DH & I have learned from this past week is that before D24 goes off to college, we are going to have such documents set up so that somebody does have healthcare POA and other POA for her in case she were to become incapacitated in some way. I told D24 about the idea and she said, “Yes! Definitely! I don’t want to make Gram’s mistakes.”
Good luck there. PCP was virtually useless with my Dad. And he admitted it–so many small things he said he could have taken care of in his office but now wasn’t allowed to due to insurance. Main advice was always “go the the ER”. The one thing he did do well was reassure my dad and explain things to him when needed.
My 86 YO BIL is finally using a cane (my older sister is turning 70 in Dec - and full fruition of marrying a 41 YO when she was vulnerable 25). Their cat who has dementia and failing kidneys cries, but he wants to blame it on the cat’s dementia and not that she is in pain. She IS in pain, but he is ‘not ready’ to put her down. Very selfish man - and he was a Lutheran Minister (retired at age 67 when their younger son went off to college, and they moved to where my sister had a better job, which included them purchasing their first and ‘forever’ home, since they were provided a parsonage all his ministry years). After DH and I went for a visit last year, DH said he never wants to go back and visit them again (DH saw how badly my BIL treated my parents, rude and disrespectful - my mom was just 3 years older than he, and dad 5 years older). DH just did not want to tolerate being around this selfish man.
@sbinaz it sounds like her insurance doesn’t require PCP referrals. I have not found that PCP’s coordinate care and their main function is referrals.
Diabetes management is extremely complex when insulin is involved. My kid has type 1 and does doses in increments of 0.025 with constant monitoring. Even so, there are highs and lows. I have always wondered how any type of diabetes could be managed for an older person if their cognition or mental health is compromised.
I wish that my MIL would use a cane. Her church GAVE her (for free!) a cane, a walker, and a wheelchair. Why doesn’t she use them? “It makes me look old.”
Oh my goodness.
Earlier this year, I helped MIL order online a fancy Mary Poppins-style cane. Very elegant looking. Really…it’s lovely. Had it delivered to her house. She refuses to use it. Why? “It makes me look old.”
My MIL has also observed deceased loved ones visit her in her bedroom just prior to the hospitalization starting…usually when she has just woken up. She’ll see the person sitting next to her on the bed or standing next to the bed smiling at her. Every time I’ve had a relative talk about something like that, something big and final happens within a couple of months.
I’m sorry for all the struggles everyone is having. Sadly, it’s all too common to put things off until “later.”. My SisIL was very organized and knew she wanted to get her affairs in order when she was 1st diagnosed with stage 4 cancer. Fortunately she was able to get it into remission long enough to see S get his BEE and do a bit more traveling and see all the movies nominated for academy awards.
We were told to come see her sooner rather than later so we all moved up our plans and went to see her that weekend. When we arrived, she admitted she had never gotten her affairs in order. I asked her if she really wanted to, as it would likely save her heirs at least $100,000-200,000 in probate fees.
She was interested so I found a very respected estate attorney who would conf to the house within 24 hours and made a spreadsheet of all the accounts in the huge bankers box of statements (all the mail she’d received over past 6 months).
The attorney was able to prepare a document that carried out her wishes in 48 hours and return with a notary to execute the documents.
My SIL died within 48 hours after everything was executed, serene that everything was settled as well as she could do it.
When I was in the midst of very harsh older chemo (2nd line, after 12 doses of more modern combination), I would dream of my parents above me, like on the 2nd floor, and also think about their home which they had since I was in 8th grade - that they were on the 2nd floor there. Then one or two times I awoke enough to see angels zooming out of sight. So they were hovering over me during a critical ill time. I was on the couch, very weak.
A neighbor of mine was very ill in the hospital, during surgery and also in recovery, where she was ‘out of body’ looking down on what was happening.
Our former PCP was so excellent, he truly managed care and referrals well. Newer PCP (who had previously done research) is interested in providing good care, and as such cares about us - so he is learning. Just saw my oncologist today, and he noted the nephrologist that saw me, referred by PCP. I didn’t really need to be evaluated by nephrologist, but at least now I am established with him in the event that I need a nephrologist. Discussed at length with oncologist my ‘cancer risks’ and it seems I have it covered. He was pleased that I am working hard at exercising (and lost 10 lb over the last year). I am getting stronger with exercise, which is helpful to on my road to better health.
For about a month before my grandmother died, she had dreams on a regular basis where she’d just wake up from a nap or she’d just wake up in bed early in the morning and she’d see her mom or her favorite siblings standing there at the foot of the bed watching her.
4-6 weeks before my mom died of cancer, she, too, had dreams like that. She told me that she thought she was hallucinating and thought that maybe the cancer was literally going to her head, but she was totally rational up until the end. In one of the ‘visions,’ she’d just woken up from a nap in a recliner chair, looked up, and said that it looked like you could look straight up into heaven right above her, that it was amazingly beautiful and peaceful, and she could hear music. Then about a week before she died, she was visited in hospice by a friend and told the friend that she’d had another dream, only in that one, God knocked on her door, she opened the door, and God spoke to her and told her, “It’s ok. I have a place for you.” I’ve always found that to be very comforting.
A wise friend of mine describes it as your loved one “had a change of address.”
I’m not scared about what’s coming up for MIL. But what I am concerned about is things being lined up for her, making sure that her pain and discomfort can be minimized for the remainder of however much time she has less, make sure that she’s living in a place that’s safe (because, honestly, living on her own really isn’t something she should be doing anymore…it’s too much for her to handle; we’re all just hoping that she’s finally realized that). It’s been very frustrating seeing her make her life so much harder than it’s needed to be.
