@sbinaz I was only cautioning you about the unconsciousness with IV morphine. I understand the situation. If she is already unconscious, my warning was not helpful but just in case, I posted our experience to help others avoid something that was traumatic.
I don’t think anyone is questioning what she decided or what your family has suffered.
I am so sorry, that’s agonizing to watch. All the platitudes in the world can’t make it feel better to watch someone you love just reject all attempts to help. it sounds like you’ve all done everything you can to make her life easier as your priority, and her priority is to have complete decision making and not care about the consequences for her or for you guys.
You have given her what she wants most – control under her terms — and that may be the biggest sacrifice of all. I hope these sunset days provide some peace and assurance that you’ve done well even when it wasn’t what you wanted.
I was greatful to have the heads up about morphine from a friend who had cared for her mother. It’s advise I’ve passed on a few times.
The other hospice advise I often give is to try watermelon when there is lack of appetite. It seems to really appeal to patients turning down other food, even if they were not a watermelon fan in younger years.
Also Watermelon juice, made with fresh watermelon was very refreshing abd mom seemed to like it.
Mom was able to get a tiny bit of morphine under her tongue in a tiny syringe to help with pain relief. It helped a little but when she got more because she needed more for excruciating pain relief, she slept and was no longer able to communicate for the last 48 hours. She had already told me and several others she loved us and given a lot of hugs and thanks.
Lots of new developments in the last 24 hr.
DH met this morning w/estate lawyer. Lawyer will have everything ready to sign within 2 business days. Estate lawyer also does taxes. MIL hasn’t filed tax returns for the past 3 years because…she just didn’t want to. So lawyer is going to do that, too.
MIL getting transferred out of hospital this afternoon for a couple of days to an inpatient hospice facility while hospice organization does more assessments of her longer term care needs. She might end up in a skilled nursing facility with in-SNF hospice care, have to wait and see how that plays out.
MIL is very grumpy. Mad at everybody. Mad at the hospital. Mad at the nurses because they won’t bring her ice cream at random times of day when she demands it. Mad that it requires 2 adults to get her in and out of bed. Mad enough that a couple of times in the middle of the night, she climbed over the bed rails and fell out of bed. Why? “Because I wanted to go for a walk.”
MIL is mad at my DH. Claims that he never goes to visit her, that she never sees him, that she’s all alone in the hospital room all the time. He stood up to her, told her that he’s driven there to see her every day except this past Sunday, that he sits there in the room for hours, etc.
Hospice nurse told DH this morning that all maintenance medications will be stopped. No insulin either. Just medication for pain management. I think that DH was a little surprised at the insulin, but MIL did say she wanted no further measures taken to extend her life and that she wanted hospice care.
Meanwhile, MIL also is mad at the hospital because “they won’t give me a diabetic meal like I asked.” Um…you said you wanted hospice care, so managing your blood sugar doesn’t matter anymore. Yet an hour later, she demands ice cream and is mad when it isn’t produced right away.
DH told MIL that she shouldn’t be asking for ice cream all the time if she’s also demanding diabetic meals. I told DH in private that her blood sugar levels no longer matter, so give the dying woman some ice cream if she wants it.
Hospice nurse met w/MIL this morning to evaluate her. Additional evaluations will happen later today and tomorrow once she’s transferred. MIL wanted to tell her story to the hospice nurse for a good 30 minutes, complaining about everybody and everything, how nobody is helping her, how nobody understands, etc. Meanwhile, my DH is knocking himself out trying to implement MIL’s wishes & requests for her end of life care.
The hospice nurse DID, however, explain to MIL in a nice way that the hospital isn’t a 5 star resort, and the nurses DO have more than 1 patient to attend to, so they are doing the best that they can. And a 24x7 bedside personal attendant isn’t possible at the hospital. Nor is it an option at the inpatient hospice facility either. MIL got mad about that, too.
MIL also complained to DH about me, had lots to say about the concern I expressed for her 3 weeks ago before all of this began. Apparently, she’s really mad about that. She also claims that I am the reason why she’s tried to hide all of her health problems for so many years. I know for a fact that this just is not true…the real reason she has tried to hide a lot is because she hasn’t wanted her kids to react with, “What?! Why didn’t you say anything? We could have helped you!” In fact, she has stated many times in the past that she has kept the information from all of us because, as she put it, “I don’t want to look stupid.”
However, in her desire to not “look stupid,” she’s ended up in some pretty amazing predicaments over the years. And, as a result, has ended up looking pretty stupid.
My DH has become the parent. His mom has become the child.
SIL is coming into town this weekend. DH has already given her a heads up about what a handful their mom is right now. I’m hoping that maybe once she gets moved out of the hospital today, that she will calm down a bit.
Is this an opening to say that dh not being able to be there round the clock is one reason y’all want her near you?
@sbinaz for some reason I was just thinking about you…
It may not matter with a short time left, but for others reading this: when you go on hospice, you go on Hospice Medicare for the diagnosis for which you are on hospice. For other ailments, you can choose to stay on meds or even get treatments, scans etc. using regular Medicare.
Hospitals don’t understand insulin and I only know type 1 diabetes. Will blood sugars go very high and speed your MIL’s passing?
I was surprised at the possibility of a SNF. Hope she can stay at a hospice facility. This all sounds difficult! Does she know she is dying?
ps our hospital actually did provide a 24 hour private aide when my mother had delirium- to protect themselves I think!
Really high blood sugars will speed her passing. She’s off of all insulin and not eating much and this morning, DH said her blood sugar was 287. Eventually, she’ll go into diabetic ketoacidosis, will fall into a coma, and will pass away.
She’s also off of all of her blood pressure medication. As a result, her blood pressure has spiked a lot. So she could go based on that, too.
She does know that she’s in the process of dying and knows that it’s because of the cancer. She’s the one who chose to not pursue any further treatment a few days ago and requested hospice care.
What she’s also done today is demanded that my DH basically quit his job right now in order to sit at her bedside until she dies. That isn’t going to happen because we have to put food on our table, pay our own bills, and…you know…do adulting things. She said to him today, “But your priority should be to tend to your dying mother, who’s wasting away all by herself in this hospital bed.”
The pastor at her church spoke w/her friend who’s been there daily since this started on 8/10 and told the friend that she needs to take care of herself before she can take care of others and she needs to protect herself from burnout.
So the friend told MIL this morning that she wouldn’t be returning in the afternoon. MIL said, “But why can’t you stay? I mean…I’m here.” The friend just said, “I can’t return this afternoon. I’ll come another time.”
My heart breaks for all of you, esp for your H and SIL. MIL is scared and angry but probably can’t or won’t express her true feelings. Things are very tough now bc so much is happening all at once and no one had time to process. Keep breathing, give yourself a moment before you share your thoughts esp to H. Whatever time MIL has remaining, I am sure you all want her to have peace as much as she will allow it. Hugs to you.
End of life is tough on all concerned, no matter what. Your MIL seems to be connected to her church. Is the minister someone who can visit her and talk with her about her feelings? Is there a “caring ministry” or something similar, who can visit your mom to provide some spiritual companionship? That might be helpful for her (from your description, she probably would protest that she doesn’t need them, but she might secretly be grateful). It sounds like although she made this decision, she’s not quite ready to go gently into that good night. Maybe she never really will be, but it would be worth seeing if the church could get involved at this point.
My father spent every bit of energy he had left trying to get out of bed. I mean, legs through the bed rails, ripping out his 02, flinging objects…It was disturbing how fixated he was , and it was a contributing factor in what meds and how much he was give — calm is a priority in hospice, as is peaceful. Nobody wants to see apatient ranting and combative, but they told us it is very very common. As is incredible anger. It wasn’t until a few days before he died that he let my mom even sit next to him, and then he was contrite and calm but had lost speech.
I’m so sorry. You’ve done all humanly possible for her, and are continuing to walk with her even as she makes choices you don’t derive anycomfort from. hang in there, it’s so hard, no matter what.
@sbinaz i hope typing this out is giving you some peace.
I think it’s important for you to be aware that you (and your husband) are powerless and that you need to vent out your frustration and feelings.
When my mom was going through her recent fall, rehab and move, my person was my mil. She’s great and I needed to have someone to talk it out.
We had a guy in skilled care, had his own room, moved in about a week before his son decided no more insulin/medications. Prior to that he had sliding scale insulin 3X day. The guy was very demented, so he had to be either in his recliner watching TV, or in his bed, and then checked on frequently. He was able to understand and communicate some - he was cooperative when he was not super confused. The man died within 3 days of no insulin. He went very quickly.
I have mixed feelings about that situation. I suspect the son did not want to have his estate drained with skilled care costs.
The situation you describe does not sound comparable to @sbinaz situation, in terms of the insulin issue. And the son may have not had the ulterior motives you think he did.
I’m sure @sbinaz and her family have carefully thought through all of these kinds of issues. So sorry, @sbinaz and all the best to your family. It’s never easy .
Without insulin or blood pressure meds, and metastatic cancer, won’t she go quickly? Can your husband take time off, or is there someone else who can be with her? Hospice volunteers will do a vigil if it comes to that. I have read that 95% of people in grief have regrets, so I just hope everyone avoids that in this difficult situation.
Does your MIL know she is dying quickly?
Each person’s need on insulin and end of life is based on them. No implication on the situation detailed - just hope everything gets signed off if she slips away quickly.
No need to read into what I said. I was only describing this one experience I had as a nurse on skilled care unit.
And I know it was painful for the son to see his dad in his demented state. Perhaps the son was carrying out what the dad had wanted.
I guess I just did not understand why you brought up this other unrelated situation and implied the son did not want to have his estate “drained” with continued care for his father.
Everyone has their limitations. One can do all that they can, and the parent/grandparent has unrealistic expectations - often with some dementia and fears.
DH helped care for his mother, who needed 24/7 care, and after all the sons visited her, she went into skilled care - much delayed from when she should have gone. And the way she wanted to stay at home was with my DH continuing to be there 24/7 (which was 850 miles away from our home).
Men often handle things differently than women, and sometimes control/loss of control comes into play. And finances does come into play too.
No son/daughter/grandson/grand-daughter should be expected to quit their job to handle things the way their mother/father/grandmother/grandfather expect them to be handled. No guilt should be put on a person who is doing their best in their situation.
Honestly, someone aged and with insulin needs most likely has some dementia to where they are not thinking the way they would be under normal circumstances.
DH on the phone w/the hospice organization now…will post more later with an update.
Not unrelated in that an example of how quickly one can go when they test blood sugar and get insulin 3X a day.
And the dad in the situation I described had gotten quite demented - so not really his dad anymore but the body going on when the brain was not going on very well. I believe the son didn’t consider stretching out his dad’s life was really a form of living, and he could see a better end w/o prolonging.
This lady, from what I gather, didn’t want to prolong. Very angry and upset. Pushed the limit on expectations.
This is a support thread. Nothing intended to be critical, and perhaps someone doesn’t understand what I meant or my intention on my post(s).