Parents caring for the parent support thread (Part 2)

Parents Forum Parent Cafe
3187

Internal medicine dr at the hospital wrote an order this morning saying no more insulin. DH brought up the insulin question w/hospice intake person/nurse/whatever their title is…that person said that for at least this 1st 24 hr, MIL won’t have insulin or any other ‘maintenance’ medications while they evaluate her at the hospice facility and determine what her care needs really are.

Hospice nurse/intake person told DH over the phone that:

  • MIL only told them of some of her diagnoses & other ailments. MIL left out a lot…like how she has a pacemaker. Left out the kidney disease and how she’s got about 40% kidney function. Didn’t tell them she was blind because of the diabetes. Didn’t tell them that she had hearing loss and needed hearing aids. Didn’t mention her high blood pressure, high cholesterol, the fact that she’d had a heart attack before, didn’t mention gastroparesis, didn’t mention all of her itchy skin because of the kidney disease along with the multiple open sores on her lower legs because she’s itched her skin raw so much. Also didn’t mention that she has no more feeling anymore in her toes or tips of her fingers.
  • from the hospital, the hospice facility was given a diagnosis of non-Hodgkin’s lymphoma.
  • however, the hospital still doesn’t have a pathology report back with the cancer cells “typed” from last Friday’s biopsy, so I don’t really know how they can say that it’s non-Hodgkin’s lymphoma right now…especially when there was a CT scan done almost 2 weeks ago now that found a large mass in her uterus.
  • hospice nurse intake person told DH that the purpose of hospice is not to maintain or deal with her other diagnoses that she had previously. Purpose is to help the patient through the dying process with the diagnosis that is causing them to be terminal.
  • hospice nurse intake person also said that MIL’s primary need right now is to get her pain levels under control. And based on MIL’s chart from the hospital, hospice nurse said that the hospital was not able to manage MIL’s pain levels because they were all over the place. Oral opioid pain pills don’t cut it, the hospital tried many times to switch to those but her pain was all over the place. sometimes manageable, at other times it would be debilitating, thus necessitating morphine in an IV.
  • hospice nurse intake person also told DH that the solution will likely be right now for MIL to be placed in a SNF (skilled nursing facility) with the hospice organization or the SNF providing hospice care within the SNF. There’s a care coordinator right now at the hospice facility making calls to find a SNF for MIL to go to. DH knows that this will likely mean that MIL won’t get to go in an end of town that she prefers because, well, she tried to avoid this decision for years…so now, she’ll end up having to go where there’s space available. that will probably mean that her friends won’t be able to go visit her like she thinks they will. My DH is ok with that.
1 Like
3188

MIL managed to call DH from her hospice room about 30 min ago to inform him that some of her CPAP machine parts are missing. What parts? She doesn’t know. But when she pushes the button to turn it on, it won’t turn on. Ok, so is the power cord missing? Maybe, she’s not sure. She wants him to drop everything and do something about it right now. :roll_eyes:

I told DH to let the hospice facility handle it. He’s going to drive down there tomorrow. :roll_eyes:

How I feel right now in this moment is…it really doesn’t matter anymore if she gets proper oxygen flow while she’s sleeping. SO WHY BOTHER?!

3189

FWIW, your MIL sounds scared and I wonder if she’s second guessing her decision for hospice care.

I also agree with the other poster who said this is an opportunity for your H to move her closer so he can be present more frequently.

7 Likes
3190

Hugs to you and DH

The choice of facility is often not an open one, for sure. Where there is room for the care needed is often the only choice.

Hospice is a different way of thinking, and I am so sorry you don’t have much time to make decisions. That makes it so much harder.

My dad was released from the hospital, where he had a special fancy oxygen machine. Once at residential hospice, he was back on a more typical supply, on 8L which was not enough to keep his 02 at maintenance levels (bc his lungs were failing) They explained that higher levels, or the fancyhospital machine, would yes increase his 02 level but would increase his discomfort as well, while not preventing his death. So they don’t do that. Nor did they administer any meds (he was a vitamin fan, took supplements too) because the choking risk was too high. Nor did they have concerns about his food intake, or do any bloodwork. It is very very difficult to think this way.

Hospice is there to make death less traumatic once it is obvious that it can no longer be prevented in the short term.

You can’t do anything about people visiting or not. I’m not sure it’s even worth the time you have to concern yourself too much w MiL’s complaints, she’s gonna be herself right to the end. Do what you can live with, later. Know that as heartbreaking as it is, you cannot save her now. You can only trust your instincts and the doctors.

6 Likes
3191

MIL called DH last night around 9 pm, saying that her CPAP machine “doesn’t work” and that “some of the parts are missing.” Well, did all of the parts (like the power cord, tubing, etc.) get packed up before she was discharged? She doesn’t know. What parts are missing? She doesn’t know. She wanted DH to do something about it. Why not tell a hospice facility staff member about it?

DH met this morning w/hospice facility case manager person/whatever-their-title-is. Was told that MIL isn’t sick enough yet to qualify for Medicare to pay for full time inpatient hospice care. They’re spending today looking for some place else (like SNF) for her to go instead.

DH then texted a little while ago, said that they found 2 places on the preferred end of town that’s closer to where MIL’s church & friends are, which actually have spaces available. DH & hospice people are gathering info on price per month.

Inpatient hospice facility where MIL is now had a harpist playing the harp earlier. DH said that MIL loved it. Out of pocket price to stay there is $500/day, so $15,000/month. Hospice location where she’s at right now is a bit too far away for her friends to drive to come visit her.

Honestly, I wish that they would all just put her in the combo SNF/hospice facility that’s 10 min from our house. But I’m not the decision maker.

DH said this morning, “I need my mom to live long enough, just a few more days, for us to get all of her trust and other legal stuff lined up. It’ll make things way easier.”

So that’s where things stand right now.

It’s our D24’s very last “meet the teacher” night at school tonight. DH & I were going to go together so 1 of us could go to the senior’s classes while the other goes to our sophomore’s classes to meet her teachers. Looks like I might be doing it solo today! :frowning:

However, on a positive note, our immediate family got to watch the 1st episode of the Ahsoka Tano series on Disney+ last night. That was fun.

3192

So sorry. I’m guessing that your husband will be getting more of those types of phone calls as his mother deteriorates even more. She sounds confused and maybe scared, and reaching out to family. But, very stressful to get those kinds of calls. Good luck with finding the best facility for her and getting the legal issues sorted out .

3 Likes
3193

MIL will be moved out of the inpatient hospice facility today or tomorrow and into a different facility. The hospice organization will provide ‘in-home’ hospice care at the new location.

Yesterday, MIL demanded that my DH leave and bring her Taco Bell. He refused. He’s been running himself ragged for 2 weeks with all of this. 180 mile round trip for 13 of the past 14 days. To anybody who’s about to say, “Just get the dying woman some Taco Bell,” go for it…YOU do it. The way my MIL is, once you do ONE thing for her, then she now ‘requires’/demands/expects it ALL. THE. TIME.

She actually told DH that he shouldn’t be working at all…he should be taking time off of work full time until she dies and sitting by her bedside holding her hand every day, 24x7, and to do anything less means that ‘you must not really love me.’

Oh. My. Goodness.

3194

Is there anyway your husband can see a counselor? Mine is so helpful when I tell him about situations like this, helping me to reframe my reactions (since I can’t change how the other person behaves). It has helped my blood pressure and stress level tremendously.

5 Likes
3195

Sounds like DoorDash would be the solution here. They deliver to hospitals.

Doubly hard in these circumstances but it’s never too late to create boundaries.

8 Likes
3196

NO! This mom will take a MILE when you give in to her requests - the family knows her. I do know in some cases doing something like this is an OK thing, but we have to take the OP word that they cannot do it ‘one time’ because this mom has endless requirements/demands/expectations.

2 Likes
3197

Great idea. 1 of our other relatives or 1 of MIL’s friends can do that. It won’t be us.

** edited to add **
MIL won’t ever have the nerve to ask another relative or a friend to do this ,though, because she knows that she’s out of line and knows that the people she asks will say no. But she’ll ask her kids instead and then when they say no, she either says manipulative stuff like “so you want your dying mother to suffer” or “if you really loved me, you’d do this.”

3198

I can relate a lot to what is being shared, especially when it seems like you are doing everything possible and it’s never seen as “enough”. That was my entire relationship with both my parents. No matter what, I wasn’t there enough, wasn’t doing enough, just wasn’t enough, period. It hurt a lot because I was doing the very best that I could, while juggling my own family and sanity.

The strained relationship made the grief that much harder and more complicated. There is a ton I regret now and I can’t get any of it back. Second the recommendation for counseling. Hospice will have bereavement counseling too as part of their service and I’d encourage your husband to talk to them.

I do think that remembering that these demands are no longer going to be endless is important perspective. Now that she’s in hospice care, the days are going to be limited. Despite all the hurt, I miss my parents every day.

4 Likes
3199

The whole situation is very very frustrating. DH & SIL & I have felt for a long time that it hasn’t been safe for MIL to be living alone anymore. So the fact that she’s now monitored and checked on is a huge relief.

Her demands for dumb things like Taco Bell push my buttons. It’s never enough with her. We love her very much, but at some point, you have put up boundaries and say, “Enough! No more!”

1 Like
3200

Logic say that she wanted to be near her friends, so she should be asking THEM to do the Taco Bell run. But obviously she is not in a condition to make logical decisions…. she is stressed about being near The End - possibly I’ll be same way. That does not mean your husband should comply with unreasonable requests.

Counselor perhaps could be helpful. But often in crisis situation it’s hard enough to just do the appointments needed for the patient.

When my mother was near the end (coming to my house during Covid), the Hospice coordinator volunteered to provide paperwork for me to take parental care leave. It was not practical for my job - was retiring soon, training others. Luckily my manager and coworkers were understanding of my many absences. Can’t imagine how I would have handled things if mom not in town.

3201

Suggestion for a counselor is great, but it’s not going to happen right now. We just don’t have the time to do that.

1 Like
3202

The hospice social worker may be able to meet with your husband while he’s making his visit. I would often step out of my mom’s room for a break and go talk to the social worker. Sometimes even 10-15 minutes would help.

6 Likes
3203

When my health issues really got to me last year, I had a couple of sessions on the phone with an EAP counselor. Perhaps your husband could do that during his long trip back and forth to visit his mother.

I totally get how hard this is, for you, him and everyone concerned! Thinking of you

4 Likes
3204

@sbinaz is there any kind of time line for your MIL’s remaining days or weeks or months? Is your husband able to do his job remotely? Sorry you are all going through this.

3205

Sounds like a master. I’ll have to remember these for later.

I can’t remember where we were (some island I think) but a favorite picture is me at a pay phone with a huge sign above it with “Have you called your mother lately?”. Source of amusement for years.

3206

AIL & UIL were going to arrive here late last night, but they never showed up and DH got a text early this morning saying they’re postponing for now. Also, MIL’s 2 cats are still in the house…will be departing for their new home on Sunday…AIL & UIL are going to stay overnight at MIL’s house while they are in town to visit her. AIL thought it would be a good idea to bring her own cat with them. And then got irritated w/my DH that MIL’s cats are still in MIL’s house.

Um…how about you ASK if it’s ok to bring your pet with you on your road trip when you’re going to stay at somebody else’s home while you’re here?

Everything is so complicated with some people sometimes. Like, I don’t even know what to say about this. It’s ridiculous.

1 Like