Parents caring for the parent support thread (Part 1)

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12101

Here’s what I learned from being part of the decision-making team (me and my siblings supporting the primary decision-maker, our mom) at the end of my dad’s life:

  1. Knowing your parent’s (or other person’s) general preferences is more important than knowing what the person would want to do in every possible situation because there’s no way to predict ahead of time which situations will arise.
  2. If you struggle with making decisions, someone else should probably be the POA agent.
  3. Be ready to ask about the ramifications of different treatment choices. Some health-care professionals will be more willing than others to offer their thoughts about what might happen if Y is done instead of X. Examples: “If dad has a feeding tube, how long might it keep him alive? If he doesn’t, how long might he stay alive?” “We can tell that dad is in distress. Can you give him a different medication? What are the pros and cons of doing so?” My dad’s PCP was okay but some of the nurses were more helpful.
12102

We were all set to refuse diagnostic procedures. My mother either had colon cancer or severe diverticulitis, either of which had broken through the colon wall. She was in horrible pain. We met with palliative care and hospice and were steeped in the philosophy and approach of not pursuing aggressive treatment.

However, I found a colon surgeon who was interested in palliative care. She did a sigmoidoscopy but had me stand at my mother’s head and watch her face for pain. When pain registered, she stopped. This amazing surgeon got enough info to decide it was diverticulitis, not cancer… The procedure was safe, even on Coumadin, when done this carefully and my mother didn’t suffer.

Ten days later, after a course of Flagyl and an antibiotic, pain was gone. Easy as that. All the grandchildren had flown home for the holiday to see her, but she was not dying, not at all.

It has taken a few months for my mother to get out of bed more, walk better, and take more interest in things (despite dementia). She lost 17 pounds. But she is even doing puzzles again.

This has made me cautious about applying the hospice philosophy. We’ll know when it is the right time for it. If it had been colon cancer, that would have been a different story.

More recently she fell and had a huge hematoma on her brown (and whole face turned purple due to blood thinners). The hematoma stuck out at least two inches and the skin was taut and shiny. It hurt a lot. I had to almost argue with hospice about getting this reduced (and primary MD said it couldn’t be done on Coumadin). I figured if it was dangerous a surgeon would say no. Well, found a 5 star surgeon who made a small slit, squeezed the congealed blood out and asked me to pack and dress it for a couple of weeks. Back to normal. The skin could have died and ulcerated if we had not done this.

I did win the discussion with hospice that this was related to comfort and dignity (and relieved the suffering of seeing the hematoma anew each time she looked in the mirror, reliving horror, due to dementia). So it was covered (Hospice even said I might lose her coverage and have to pay.)

I don’t want to have to make these decisions without support and will keep trying until I find the hospice or pre-hospice that works with me instead of against me.

I anticipate more decisions and am afraid of making the decision not to treat prematurely. At what point does dementia justify not treating pneumonia? I really don’t know yet. We want to avoid artificial ventilation but a hospital stay could lead to that. Best scenario would be to try to treat, then bring her home to AL and avoid ventilator. But sometimes you don’t have that chance.

These are all tough situations and in our family, though I am first proxy, I also try to get consensus with two brothers which further complicates things.

12103

Ps she is talking about puzzles but can’t do them anymore…my optimism got the best of me

12104

^does she still enjoy trying? My mom can’t do word searches anymore but still seems to enjoy circling “words” - sometimes real words, may times not, and crossing out the lists of words underneath. If she seemed frustrated I would stop giving them to her.

What a Health roller coaster. I’m so glad you found ways to help your mom overcome these obstacles, and that she is improving from diverticulitis.

12105

It seems to me @compmom you are making all the appropriate palliative decisions. I also wish you had some help with these decisions. I’m glad the diverticulitis is better. I am deciding the no antibiotic route unless there is pain. Dad assaulting mom yesterday was frightening. They would both be mortified if they knew.

12106

That assault was terrible, so sorry. For us, antibiotics were the only palliative option other than morphine, and antibiotics were less of a fall risk! When dementia reaches the point you are dealing with, no antibiotics seems like a good choice. I hope you have a better day today.

12107

One has to weigh out on no antibiotics. If for example one has a urinary tract infection, you may want to treat. However if many medical considerations, very weak and with pneumonia, palliative care may be the call.

89 YO MIL was re-admitted to hospital - pneumonia, weak. Will see how her recovery goes.

12108

My father landed in the ER last week with what turned out to be a back spasm. All tests/scans were negative so they sent him back home with an order for PT/OT, a script for muscle relaxants, and a walker. He’s non compliant with PT/OT, refuses even the basics in terms of sleeping positions, how/where to sit, etc… Needless to say, he’s not regaining his strength and is now having difficulty getting up and down out of chairs/toilet/bed, etc… He lives alone as my mom is in a memory care unit and just has a weekly housekeeper that comes to clean and do laundry. He was upset this morning because he got stuck in the bathroom and his go to neighbor to call wasn’t home… Then he called his sister who is over an hour away and she didn’t pick up. He finally got a hold of a friend in the condo who helped because he refused to press his lifeline (which at least he was wearing).

I suggested we call the home care company that is doing the PT/OT and get an aide or caregiver to come help, at least to get him up and moving in the mornings. He refused. He won’t give me the number of the agency either because I offered to call myself. Thankfully the PT is coming this afternoon but I’m still very concerned. He is going to ask for a raised toilet seat and discuss other assisted devices.

My fear is that I honestly don’t think he’s going to do what he needs to do to heal and I live 1300+ miles away. I’m flying down next week but he is totally mentally with it so I can’t just override his wishes on having a caregiver. If his mobility decreases further, I’m hoping he’ll realize he doesn’t have a choice - it will be a caregiver or moving into AL in my mom’s facility.

Thanks for the ear. I just needed to vent…

12109

@SOSConcern sending your family some virtual support. My brother and I were saying yesterday that pneumonia can be an old person’s friend.

@momofsenior1 , I know it helps to vent and know you are not alone. It really helped me. You can take or leave what others have been through or advice and know you have support because we have or are doing the same journey.
Just FYI, someone getting stuck and refusing appropriate help is not really “totally mentally with it”. Not completely incapable of making his own choices, but that isn’t the same thing!

12110

Yes. many of us have dealt with seniors that could carry on a rational conversation and remember both yesterday and 50 years ago, but can’t accept that they need help. Changing your self-image from “person who can take care of myself” to “person who needs help going to the bathroom” is pretty challenging.

I don’t have any good answers, but plenty of empathy. Been there once, headed back for another round. Trying to press on and limit the second-guessing.

12111

A person who is not complying with health-care recommendations might still be mentally competent. Or might not. My mom is 90. She was having terrible knee pain last year. The doctor recommended that she do physical therapy. She refused. He recommended that she take pain medications more often. She refused. She said she wanted a knee replacement. She said she would follow doctor’s orders after the surgery. She had the surgery and she did do PT and take pain meds basically as directed after the surgery.

12112

@momofsenior1 you have my deepest sympathy. Your father sounds enough like my father that I started hyperventilating when I read your post, even though he’s been gone 4 months. I live in the same city but honestly it didn’t help. Instead it gave me a false illusion that I could actually make a difference.

I don’t have any advice, just thoughts.

Some people just need to live life on their terms, even if it shortens their life. Other than possibly the driving issue, I think maybe we should just let them live on those terms, even if they make - to our eyes - bad decisions. My Dad’s life was definitely shortened. He refused any and all PT and OT, and refused a housekeeper. And wouldn’t let us talk to the doctor. It was hard to watch the way he was living but in hindsight our relationship would have been less stressful if I just backed way off. It’s so hard. What felt like love to me was interpreted by him as control. Yet it would have felt uncaring of me to NOT raise certain issues (sometimes repeatedly).

No answers. Vent away.

P.S. I will say the raised toilet seat made a huge difference. The toilet seat and meals were the only interventions from me that he accepted.

12113

Thank you @calla1!

12114

I swear, setting up a “respite” break is more stressful than just taking care of mom and scrapping the whole thing. I’ve already talked with the nursing home, area agency on aging (there might be funds to help pay for it?), a case manager, the doctor’s office, multiple times each, as well as getting her ready and into the car (a major struggle) to go see the doctor for a quick “check” so they can say she is fine health-wise to go to the nursing home. None of this is very time consuming or difficult, just my personal problems with stress and flurries of phone calls and worrying about leaving her all rolled into a big stress ball. I should add though that everyone has been extremely nice and helpful and truly cares about both the patient and the caregiver - something that always has me on the verge of tears. People who “get it”!!

12115

I agree with @calla1, it felt very foreign and callous, but we came to realize the in laws chose their terms and living in their own home beyond when we thought was smart was their choice. At 87/97 at the end, it did not shorten things too much, but it did make that last 6-12 months when they were forced out more miserable.
I have come to the point of acknowledging that we all get to choose our lives, as long as we are not inflicting it on others, so no dangerous driving, but if you want to risk a broken hip, you get to make that choice…at least until you break your hip.

12116

@momofsenior1 and @calla I have also gone through the same thing with my mom to the point where we’re now watching her die because she would do nothing to help herself. She spent four hours on the toilet before she pressed the lifeline. I live 15 minutes from her. From there after a brief stay in the hospital she ended up in rehab where she would not participate in PT or OT. She wouldn’t eat or drink. After a few weeks they told us we had to find someplace else for her since she was making no progress. They kicked her out because of her failure to participate. We told her this over and over and she didn’t care. She didn’t want to comply. Now she is completely immobile and incontinent. She does not eat or drink. She sometimes takes her pills if I give them to her. She is dying because she chose to live the end of her life on her terms. She is completely bedridden now at her AL center with hospice and private help coming in all day to make her comfortable. I’m there everyday feeling helpless watching her die.

I sure feel for you. This is so emotionally draining.

12117

It is impossible to get folks to do things if they choose not to. Even many years ago, we got my mom’s internist to send her to PT to help her walk faster — improve her balance and gait because it was slowing more and more and she was increasingly becoming a fall risk.

We took her regularly to PT. While there, she’d walk as fast as possible and do what was asked if her and nod her head that she’d practice/exercise between session. Each session, she’d proudly/gleefully admit she didn’t do ANY exercises.

They discharged her and she was pretty much exactly as she had been before all the PT. We haven’t ever suggested PT since—no point in it. It was very frustrating.

Dad also refuses to do ANY exercises or anything for his conditioning and stamina. The most he will do us walk from their unit to dining room (or one of our cars) and back.

12118

I was arguing with her when she was in rehab. I could not understand why she wouldn’t possibly want to help herself get stronger and to walk again. I also couldn’t understand why she wouldn’t eat or drink. I told her all the time how that would help her get stronger and get healthier. I had little clue that she had no intention of doing any of those things to help herself. She didn’t want to get stronger, to walk, to get healthier or even to live. She has given up. I’ve stopped arguing with her and I’ve accepted this, as difficult as it has been. Who knows what I’d be like?

12119

@ams5796 , I’m sorry. This must be very painful for you. We’re here to listen, wish we could do more.

12120

I haven’t posted in this thread for awhile, but I am following the myriad journeys described here with love and sadness in my heart for all of you dealing with aging parents. In the four years since my dad died, my mom moved from their condo to an apartment close to my sister. It’s lovely, big enough, and has large windows allowing her to watch the world go by on the days she doesn’t go out, which are many. It is not in a continuing care facility, so she is on her own except for a biweekly housekeeper and my sister, bless her, who drops by with food, takes her to the store or over to her house to see her kids, and pretty much provides all external stimulation except for daily phone calls from me and our other sister - we live 7 and 4 hours away, respectively.

In the last 24 hours she has been diagnosed with shingles (she had the first vaccine) and is miserable. My sister had to drop everything and get her to the doctor, then the eye doctor to rule out optic nerve issues, and to the pharmacy. Mom, a strong, smart, vibrant woman in her prime who, singlehandedly, cared for my stroke-disabled dad at home for almost 5 years, and managed their many medications like a pro (she was up on the relevant generics and could identify what each was taking and why) now can’t see that her dishes aren’t really clean and asks the same questions over and over. She has willingly given up her car, allows my brother-in-law and me to manage her finances, and lets my sister deal with doctors etc. I feel like she’s essentially given up all those things that kept her brain vital, but she doesn’t trust herself. And she is so frustrated because she knows what she doesn’t know anymore.

We’ve tried to get her to go to the local JCC for senior classes but she is unreasonably afraid of taxis and Uber and my sister can’t be a full-time driver or aide. She also resists the idea of “help”, though we are getting to the point of insisting on an aide for a couple of hours on a couple of days a week so she can get out when my sister isn’t available. This is just a long way of saying that we are not yet where many of you are, but I see it coming and I miss my mom as she has always been.

When my dad died she was the strongest person I’ve seen. He had, as I said, been profoundly disabled and diminished from the stroke.He was diagnosed with pneumonia at about 4pm one day and was gone by 2am. Nurses in the hospital pushed my mom to accept more invasive and difficult procedures but she was strong and recognized the onset as what it was, a blessing. As they were admitting him and the nurse was accusing my mother of killing him by refusing treatment he quietly passed away - I saw it as him taking his exit…stage right. She has not regretted her decision for a minute, it was time. I only wish when the time comes it can be as simple for her, but I fear that she will continue to disintegrate before our eyes.

My sister and her H are taking their teenage kids on vacation for winter break and I’m heading up to spend 5 days with her, then I’ll drive her back to my house for a diversion and to see her great-grandson, if the shingles has resolved. Your patience and experience humbles me and your parents are lucky to have you all in their corners.