Hello, could use some help knowing what to say to my husband about the situation with his 83 year old mom.
My mother in law has been living with us since last summer. She’s been in end stage kidney disease for years, along with diabetes and congestive heart failure. She put off going on dialysis for a long time feeling that she could manage her kidney failure with careful eating, and in many ways she has. In June however she had a heart attack without realizing it, drove herself to the hospital two weeks later because she wasn’t feeling right. Finally after much agonizing she decided she would start dialysis. The fistula they put in several years ago was no longer an option so they use a port in her chest. She says she hates dialysis, has an extremely hard time sitting still for the 3-4 hours, lots of rocking back and forth, agitation, ending sessions early. We got her a prescription for a muscle relaxant that worked before and she took it once and decided it didn’t work.
Yadda yadda, long story short is that her health has gotten progressively poorer, her legs will buckle and she’ll fall in the house, hardly eating and losing a lot of weight (she’s also on Januvia but doesn’t want to stop taking it), highly ambivalent about dialysis still, and has gone like once in two months. Sometimes she says she’s got to figure out what to do to get better, that she isn’t going to die. Other times she says she’s lived a good life and is just tired. She has friends who call her pretty often and occasionally still goes to church functions but has largely stopped driving, really she shouldn’t be driving at all now, topic for another post.
Anyway, from what I’ve learned from hospice professionals she’s showing a lot of signs of impending death. I say this to my husband in the most gentle way possible, trying to explain that eating less is normal and actually helps in people whose bodies are winding down. You don’t want to force feed a person in the process of dying.
I know it’s tough to see a parent go through this, especially when there’s so much ambivalence and anger at the dialysis center (his mom). The impulse is to want to help her, counsel her, urge her to do whatever she can to keep going. She’s strong minded and doesn’t want to listen to a lot of his advice now. He tells me he doesn’t know what his role should be now.
He is a loving, devoted son and he’s also frustrated by his mom’s refusals in the face of her decline. What should I tell him? What would help him understand better what his proper role might at this time while his mom makes these kinds of decisions to stop eating full meals and etc.?
Ginny, an experienced geriatric-care physician wouldn't necessarily have to sit her down and administer a test. They recognize the signs and are always evaluating their patient. I'm observed from the time I walk in and get weighed until I walk out the door. The aide assessing my health before the doctor comes into the examining room enters data into her/his computer. She notes if I'm alert, give reasonable answers to her questions, etc.
When my LO was diagnosed with dementia, the doctor had never seen him before that particular wellness visit because we were new in town and had chosen this particular doc for geriatric care/internal medicine. LO couldn't tell doc what his career had been, seemed vacant in his demeanor at times, and so on. It didn't take a formal test for doctor to know what was going on. He deals with it every day. Doctor then looked at previous medical records at another practice and recommended current follow-ups. LO never had a clue anything was going on other than a regular physical exam.
So many people come on this site and say, "Mama won't ever consent to a cognitive test!" Tell the doctor what's going on, and the doctor will take it from there.
She's giving you signals that she wants to quit rather than go on as she is. Your husband's role is to listen and to allow her to die if she wants. You can't exactly hogtie her and drag her to dialysis. Get a hospice evaluation and talk to them about palliative care as well. They may have insights that will help all of you, especially your husband. If he could reframe his mother's decline in a new way, he might become more accepting of the inevitable.
I wish you luck in sorting this out.
Well, as of today she’s approved to go back to dialysis and she’s eager to do dialysis so I guess hospice still isn’t an option yet if it ever will be.
This is tough.
I will talk to my husband about hiding the keys. She may throw a fit but you do what you must. I guess we could say they’ve been misplaced.
Your husband needs a good talk with a REALISTIC and HONEST MD about his mom's condition. She has had a long life. His approach to her end of life is harmful to himself and to her. He should seek counseling if he cannot accept that we all will die, and if he is unable to step up to make his mother's final exit as peaceful and painfree as he is able to.
As to his anger? That's CLASSIC and the symptom indicating he's having severe denial. When there is grief people often choose to avoid it by being angry. The targets are almost always medical, but in some cases the denier may even self-accuse, or accuse other family members.
Your hubby sounds to be in a mental crisis here; I believe he needs professional help. And I believe he needs to be leveled with by family members that this is NOT ABOUT HIM now. This is about MOM and making her final days as good as possible. HE is not the victim here, and he hold power to hurt or help his mother. What he is doing now is cruel to her, and is not a sign of his love. He needs to seek help in order to stop this harmful behavior.
I see my husband caring very deeply about his mom. He also does a lot for her every day to support her wellbeing. So we all have ways of showing that we care about someone.
What he says is that he doesn’t understand his ROLE now as things are intensifying with his mom’s declining health. Maybe it’s time for him to shift away from “I’ve gotta try everything I can to convince my mom to do the things I think will help her even though she vehemently rejects my suggestions” to “my mom is making her own decisions even now and I will do my best to support her and respect her wherever she’s at with this stage of her life.”
I’m hoping for some kind and friendly insight on ways to frame what a loving and responsible son might be doing now at this juncture, what a healthy “role” might look like for him now that his mom is giving up on some things. How can he see himself as kind and competent even as a loved one is going through a dying process? I hope I said that better this time.
I think it is cruel when someone so ill has people trying to force them to keep trying .
I believe when someone feels done , too tired , that they should be heard and listened to , so that dying person does not feel all alone screaming in a vacuum .
I think your husband’s role is to acknowledge her decisions and make the rest of her life as comfortable as possible .
My husband likes to see himself as someone who is well-informed and has good answers for life situations. His mom’s ambivalence I think is making it harder for him to back off with his advice to her.
I like the idea of having the goal of making her life as comfortable as possible. Hospice nurse Julie on YouTube says keeping them Safe, Clean and Comfortable are the goals. I’ll suggest it to him. Thanks for helping me think this through a bit more. I want to support him as best I can though this tough time.
Of course with all those noble thoughts, then I’m reminded of what she is and isn’t doing to help us, things she could be doing but isn’t to make this easier on us as well. It can be a tough balancing act trying to be so selfless and focused on the dying person and getting it right, when we also have so much else to be dealing with at the same time.
Your MIL is in poor health. I am surprised that dyalisis was recommended since its so hard on the body. My friend could not even do dyalisis because as a juvenile diabetic, her veins could not hold up under dyalisis. I have lost 3 friends who chose to stop dyalisis and go on hospice.
I would bring in Hospice, but that is MILs choice. The human body can sustain on very little food. You may find she has Dementia type symptoms. This is where the toxin is not being filtered out and is effecting the brain. This is what she will die from if her heart does not go first. Your family needs to prepare themselves.
How would we get palliative care for her I wonder? Maybe she’d be more amenable to that.
I think my husband is struggling with What can I do to be a loving and responsible son when my mom rejects so much of what I’m offering her? How can I see my role now in a way that feels right and good during this challenging time?
Has your MIL ever had a cognitive/memory test? At 83, it's possible she has mild/moderate dementia, since what you describe can be symptoms: indecisiveness, "stubbornness", irrational decision-making/thinking; agitation, etc.
If she has dementia then your husband will need to make decisions in her own best interests. I realize it doesn't feel good or right to make what seems like life-or-death medical decisions for someone. But the reality is she cannot be forced to have dialysis on a regular enough basis as to give her improved kidney function.
I think getting her assessed for dementia and hospice may be the only options.
I also learned last year from some YouTube videos by a kidney doctor why some people reject dialysis and her perspective was really helpful. I think I stopped judging my MIL so much for waiting so long when I understood the pros and cons better and heard that choice validated by a professional.