We've enrolled my Mom in hospice (Mom passed Dec 3, 2024)

Miscellaneous and Personal Stuff I Must Share
1

Mom and Dad are both fairly private people who don’t post on social network, so I can’t really write this on my Facebook account. So I thought I’d lean on my fellow Dopers to go through my thoughts and have a little place to chat, as time and energy allow.

Some of you are aware that my mother has colon cancer. She was diagnosed at stage 4 just about a year ago. It was an aggressive cancer - she had a clean colonoscopy three years prior.

She was on an immunotherapy treatment every two weeks, which worked really well. Her oncologist always told her it works great until it doesn’t. We’ve reached that point. This past Monday, her oncologist told us it was time to stop the treatment, and go to hospice. Her tumor markers (CEA and CT-DNA) were both increasing, and the recent CT scans shows the liver metastases were all growing noticeably.

The last few weeks, she’s been very tired. She went from walking on her own, to using a walk, to needing me to push her in a wheel chair to get to her appointments. She fell on Monday trying to get to the bathroom, and we spent many hours in the ER before her regularly scheduled doctor’s appointment.

She lives with my father, but he has his own issues, including some dementia. We arranged for aides to be at the condo 24 hours a day, in shifts, as a short term solution. Hospice did their intake and exam. We had been looking at moving the both of them to assisted living, but we can’t do that now. Not fair to Mom to move her right now. Not fair to Dad to make him leave his home of 20 years at the same time he’s losing his wife.

The family (both parents, my sister, and me) usually gather at my house for Thanksgiving. Yesterday, I took all the food to their condo instead. Mom hadn’t been out of bed all day, and had no solid food. She did have about three quarters of a protein shake, but that’s it.

We called the hospice care team, and they sent an emergency nurse out for an evaluation. They determined that she needs to be in crisis care, which means they provide a bedside nurse 24 hours a day, and palliative care as needed. There was a little hiccup getting the first nurse out last night, because, well, it was Thanksgiving. But around 10:30pm we finally got one, and we was able to give her some morphine.

Today, we have a full time live-in aide starting. That’s our long term solution to handle Dad, which means he won['t have to move. She’ll have to make sure he eats appropriately and help oversee his medication. I’m taking over for Mom on managing his medical appointments, although I hope to have the aide handle the transportation so I can just meet them at the doctors. And for some simple appointments, I may not need to go at all.

The condo has two bedrooms, but right now the second room is an office with computers for both parents. I’m going up there (about 15 minutes drive, not a big deal) this afternoon to convince Dad that it needs to happen, and start moving things. My sister will join too.

It’s been a long week. The next few days are likely to be long and painful as well. But we’ll do what we have to do. I was supposed to do my yearly traditional Disney trip starting tomorrow, and I’m cancelling that. One of the nurses yesterday told me that it’s possible Mom is going to plateau at this level and linger for a bit, but more typically, will pass in 3-6 days.

I’ll update as I have time and energy.

2

I’m sending strength and support to you.

Your post is filled with such love.

Take care of yourself. Find a place where you can go scream.

~VOW

3

I’m sorry for your troubles, Digital. These are the types of experiences that a lot of us must go through, but there is something about having to do it during the holidays that makes it much more poignant.

I will have you in my thoughts. Be gentle with yourself.

4

Best wishes. Losing a parent is hard.

I’m glad you were able to arrange home hospice care. We did that for my mom, and it was great. I only wish I’d done it sooner. (Long bitter story.) The hospice nurses took good care of my mom, and the social worker they sent was really helpful for me. Much more helpful than the therapist i hired.

Before my mom caught covid (which killed her) she had an assortment of other problems, including mild to moderate dementia. She was able to hire an aid to live with her, and that worked really well. I think it may have accelerated the dementia, because she didn’t have to try as hard to hold everything together. (Or maybe that would have happened anyway.) But the aid kept my mom clean and fed, made sure she took her meds, encouraged her to walk around a little, and provided social interaction, which she desperately needed. It was a very good choice for her declining days, and i hope it works well for your dad. He’s going to need a lot of support when his wife dies.

Visit as often as you are able, but don’t feel like you need to be there when you have other responsibilities, or just when you need a break. You are caring for them, even when you do so by proxy.

:people_hugging:

5

I am sorry you have to go thru this. Been there. Be sure to take care of yourself along the way.

6

I’m sorry life is handing you (and your parents) this mess. But it sounds like you’re handling the practical parts as well as can be done.

And for the feelings part, we’re all here for you. Many of us, including me, have done something similar. Your pain and frustration is uniquely your own. But we’re all ready, willing, and honored to help you carry it forward.

Big {{hugs}} old friend.

7

I’m so sorry to hear this. Your post made me well up. It’s my Mum’s birthday today, she died 18 months ago and sadly we weren’t able to provide live in care for my Dad, so he had to go into a care home. It was awful for him at such a terrible time (he has since also passed), so at least take some solace from knowing he’s at home, being well cared for, surrounded by familiar things, whilst your Mum is in the best place she could possibly be to get the care she needs right now.

All strength to you and yours.

8

I’m really glad you were able to get hospice for your mother and live-in care for your father. Both of those will help a great deal.

But nothing makes this easy. Sending long-distance hugs from me and/or the cats and/or the dog – whichever, if any, is of most use to you.

9

My MIL has been in hospice at our house since May, and her decline in the last two weeks has been dramatic. We’ve had a nurse once a week, unless something came up, plus an aide three times a week. They have all been amazing - both in their care for her and their patience with teaching us what we need to do. I can’t say enough good things about our team

After every visit before they leave, they ask us how we’re doing - and I honestly think they ask because they want to help. It’s been great for MIL because she hates the idea of going to a facility or dying in a hospital. I don’t know what we’d have done without hospice.

If your team is even half as good as ours, you’ll do fine, or as fine as one can under the circumstances. Hugs to you and yours.

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It’s rather inspirational to see when somebody’s doing so well at executing that which is so awful.

I wish you all the good time in the world with both of your parents – however much time that translates to.

You and your sister … take care of yourselves, too, huh? This is so emotionally grueling and physically exhausting. I’m glad there’s help.

11

Please take care of yourself, too. It was so obvious from your post how loved your parents are.

12

Having done this 3+ years ago for my wife …

This.

Addressed both to the OP & to FCM:

No matter how perectly you manage the next weeks / months, you’ll have a tendency later to question yourself. There is always something more or different you might have done but did not. Always. Had you actually done before everything you’ve thought of afterwards, there’d be a new and different list of things you didn’t do but might have. You brain is great at inventing those.

Don’t fall for that mind trick. You’re (both) doing awesome and will continue to do so.

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And please let us tell you that again as often as you need to hear it.

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ahh, thanks everyone. It really is helpful to hear all the good thoughts and advice.

Today started around 8:30, when the guy I deal with from the aide company called. We started a live-in aide today and she arrived, but no one really briefed her on the situation or setup, and the night aide didn’t tell her enough. Plus she wanted to know where to put her things and where she was going to sleep. Oops…forgot to deal with that! The condo has two bedrooms, but the second bedroom is used as an office. I told her we were going to move Dad’s computer out into the living room and bring a bed for her for the bedroom. She was fine with that. About 11am I finally made it up there, and went through all the history and such. The aide is wonderful. She and Dad are getting along so far. We talked both short and long term plans, including how we’re going to manage various aspects of Dad’s needs. That’s complicated too, and would deserve it’s own thread. Eventually.

At one point, Mom wanted a sip of water, so the aide and the nurse sat her up and tried. She had a lot of trouble swallowing. She did eventually get one sip down, so success there.

Her pain is getting worse. She had a few morphine shots through the day. Around 8 she was getting very uncomfortable. They gave her something for anxiety, and another morphine shot. She finally calmed down, but was breathing fairly heavily.

She does try to communicate still, but it’s mostly incoherent. And she has trouble moving her mouth, so it’s incoherent mumbling. I can tell she wants to tell us what she’s feeling. It’s just so hard to figure out what she’s saying. The nurse said her BP is still strong, so she doesn’t think she’s quite ready to let go yet. But her kidneys are shutting down. They did cath her, and the urine that drained is dark yellow. By the time I left she wasn’t really producing any.

For the bed situation:
I remembered that I had a spare double bed in a spare room at my house, so I started checking on local friends with trucks and vans. Struck out on the two best choices, so I decided I’d just rent something. Then I remembered that I cat sit quite often for a friend who lives near my house - including for a month when they were stranded in Italy in 2020 because of Covid lockdowns. So I called him and asked if he’d help. He and is wife were on board. They went to U-Haul and rented a cargo van and came to my house. We took the bed downstairs and loaded the van, and went to the condo.

We staged the bed outside the front door and started taking the office apart. Partway through that effort, hospice delivery called saying they were 15 min away with the new hospital bed for Mom. So we diverted and took Dad’s bed out of the bedroom (they sleep in side by side twins), and rolled Mom’s bed over into that space. The hospice guy showed up and they set up the hospital bed, and we transfered Mom over. Then my friends and I put Dad’s bed back in place.

We then finished taking everything off Dad’s desk. My friend took it apart, and we moved it in pieces around some tight corners. He re-assembled it, and we collectively put the computer stuff back on it. My friend happens to manage a small lab as part of his job, so he’s really good at cleanly laying out wiring. He did a great job.

We then loaded the old bed back in the van, along with an area rug that was no longer appropriate. My friends drove back to my house and put the bed back upstairs, while I stayed with the family.

(I did ask the aide if she would be comfortable just using Mom’s old bed, but she didn’t want to do that. I respect that.)

My take-aways today…my sister was wonderful today, sorting through Dad’s medicines from the stuff Mom had set up, checking what each pill is so we have an accurate list of what he takes when.
The new aide seems like she’s going to work out well. She pitched in all over the place.
The hospice nurses are doing their thing. The day nurse was on the phone a bunch of times because she wasn’t satisfied that the hospital bed was being ordered properly. She kept on it and made it happen.
And the friends that came when I called for help…I know I’ve done a lot for them, and they are good friends anyway. But helped make so much happen in a quarter of the time it would have taken me alone.
Right now, I’m thankful for all the help. And hopeful that we can keep Mom comfortable through the end.

15

Sounds like you have a great team around you. Don’t be afraid to lean on them.

Best wishes to you and your parents during this tough time. We’re all pulling for you.

16

I’m sorry you have to go through it. I’ve been through it with both parents. There are little things you don’t think of that can make a difference. If there’s any appetite at all you can give them a selection of comfort food. Things like mashed potatoes and gravy from a chicken restaurant, Various puddings. Lipton chicken dry mix with a little extra noodle and egg drizzled in while it’s boiling. That goes down very well without having to chew anything.

One of the things that fails is the digestive system so talk to the nurse about what to give them so they don’t get stopped up. That is just misery on top of misery.

Find a snow cone maker and make shaved ice with frozen Gatorade and/or plain ice. That can be very comforting when it’s hard to take in even small amounts of water and there is still thirst. Dehydration makes bowel movements that much worse.

This last suggestion may sound strange but I have found it universal to anyone who is bed ridden. Ask them if they want a back rub. I’ve had an immediate YES to this question from both parents as well as a bed ridden friend of the family. Warm your hands in hot water.

17

Human touch is so important! When my dad was in care and not really responding to conversation or engaging with us on visits I just started gently rubbing his shoulder back and neck it made me almost cry to feel his broad shoulders thin of muscle but still broad and bony, but it made us both feel good and I started doing it every visit. Gently squeezing his hand or softly brushing his hair. Not much else I could do.

My condolences to the OP.

My MIL is in a nursing home in hospice right now. A terrible situation.

18

Today’s nurse was so much better than last night’s. We really felt that the nurse last night was not being aggressive enough with the allowed pain medication, nor with the follow-ups to get in touch with the doctor. I think Mom suffered some because of that. My sister and I both made our displeasure clear to the case worker this morning, and to the day shift nurse that showed up.
The nurse told us she was already taking action based on what she saw when she got there, before even talking to us.

By the time I got to the condo, she was on the phone with the doctor. I was able to give consent to him facetime-ing so he could see Mom. His assessment seemed appropriate to me. They changed the protocol. Instead of 2mg morphine as needed up to once an hour, she now gets 4mg every four hours automatically, plus an additional 2mg up to once per hour if needed. They made a similar adjustment with her ativan.

She was MUCH more peaceful today. Which is a tremendous relief. We’ve told the scheduling team that we do not want that particular night nurse back. They are taking our complaint quite seriously, apparently.

Medically, Mom has slipped a little more, but is still hanging in there. The nurse suggested that my sister and I go tell her that it was going to be ok, that we were ok, and that we had everything taken care of with Dad. Sometimes patients are hanging on because they are worried. So we did that, and hung out just holding her hand for about an hour. I did rub her back some, as suggested up thread a bit - thanks for that.

Her breathing is shallow, but steady. I’m told that oxygen will be delivered between 6 and 10 tonight, so they’ll start her on that for comfort.

She is still producing urine, although she hasn’t had any fluid intake. So it’s just the body absorbing and spitting out fluids at this point.

The nurse asked what music Mom likes, so we ended up with some nice classical music playing.

I’m home now, and having some dinner. We’ll see what tomorrow brings.

19

So glad she has strong advocates like you and that you have each other. Sounds like the day nurse is my kind of nurse. You did right by not having the stingy, controlling miserly night nurse back. Good for you.

Touch and talk is just the ticket. Telling her it was going to be ok and that your dad was going to be taken care of was so wise. Touch, talk and telling her you’ll all be ok-keep all that up.

20

Sounds like things are going as well as they can.

Just go with your instincts when you are with her.