Mom won’t accept help caring for Dad
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Anonymous
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My dad has pancreatic cancer and mild/moderate dementia and is now on feeding tubes after surgery and will start chemo (again) in a few weeks.
My mom is absolutely running herself ragged. She has literally put herself on an all liquid diet out of sympathy for my dad and won’t let anyone else eat or talk about food in front of my dad (though he, unlike the rest of us, has tubes for actual nutrition!). She’s only sleeping a few hours a night, and collapsed last night in her clothes only to wake after a couple hours to help my dad when his tubes needed flushing. She’s showered once in the last week. She’s also doing dishes and cleaning and doing laundry AND trying to be emotionally supportive to my dad. I’ve been there to assist as much as possible, I’ve managed a ton of logistics and when I’m present I do as much as possible (without asking her; if we ask she says she’ll manage it) but I have to return to my own life soon and reduce my visits to a few times a week. I’m exhausted by it all and I’m doing 10% of what she is. We hired nursing care in their home 24/7 (my mom accepted this but says they are only there for “emergencies”.) I’m trying to transition the care to the nurses. But my mom wants to be the one to do everything: give his medication (which makes it super confusing when the nurses don’t know if it has been given), do his injections (WHY when we are paying for a nurse!?!), manage his tube feedings, change his bandages, change his clothes, etc. She definitely also wipes his butt when he toilets and yet was too embarrassed to even tell the nurses he does that. What do I do? I’m frustrated but I’m thinking at this point she has 24/7 care and I just need to let her sink or swim - as in, she WILL burn out and at least she’ll have someone there to pick up the pieces. Is that ok? Or do I need to try (again, and again) to get her to STOP and accept help? The nurses are definitely trying to do their job while also being respectful (and avoid being fired, frankly) but she just says no or goes ahead and does things herself. She’s so tired she’s not even thinking straight. Any advice? |
Anonymous
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Prepare for 2 deaths
Sorry for the honesty. It could happen. We had the well parent die first. If she comes through your Dad's end, though, she will probably surprise you. She will focus that energy on her next step in life and it might be a vibrant one. |
Anonymous
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OP, for your own sake --- and because you have done everything you can, drop the rope.
And the nursing staff has seen it all before. |
Anonymous
| Does your mom have a good friend or a family doctor. Someone she would feel comfortable talking with? |
Anonymous
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OP here.
My mom has zero good friends, and no family outside her kids that she speaks with. My dad is her everything. Their love is palpable - everyone comments on it - but at a certain point that kind of devotion is destructive. The “prepare for two deaths” comment really is what I’m afraid of. She has aged so much in the last several months. But I like hearing it’s ok, at this point, with 24/7 professional in home care, to just drop the rope. If she asks for help I will always be there but it would be pretty shocking if she ever asks me for anything. |
Anonymous
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If she's the type to have no friends and hyperfocus on one person or activity, it's going to be extremely difficult for her to relinquish control. Because this is what this is - a battle for control.
Maybe you'll get through to her if you catch her making caregiving mistakes that affect your father's wellbeing - such as forgetting a dose of meds, or giving a double dose, not flushing his line properly and then an infection develops, etc... But until she crashes or makes a serious mistake, I don't see her agreeing to let go. You have to wait for that moment and step in. |
Anonymous
| If he has dementia not what you want to hear but why start chemo? Dementia is miserable especially on top of cancer. I’m sorry you are going through this. |
Anonymous
Good point. |
Anonymous
+1 that was my thought too. Dementia and a feeding tube - it might be worthwhile to at least meet with a palliative care team to clarify goals (it’s different than hospice). If may be your dad wishes to go full-steam ahead and of course that should be respected - but he might be doing it for your mom. Is he able to participate in discussions about his care and preferences? It sounds like you’ve done everything you can. I think it’s okay to take a step back. |
Anonymous
I don't think I'd accept care help either if I could do it. My grandma was like that. Instead of focusing on care help, maybe focus on cleaning/laundry help, grocery or meal delivery, yard help and other things to make her life easier. That way she can focus on Dad. It's hard to guess about two deaths. It can go either way. |
Anonymous
| It wasn’t as extreme as your parents, but I had a similar situation. I took my mom aside in a quiet moment and told her how impressed I was with everything she was doing for Dad, but that I was terrified that I was going to lose both parents. I also asked her to help me understand their finances and what I needed to do in case she dies first and it falls on me to made decisions for my dad. It was a painful conversation but it did scare her stratight and she did start taking some small steps to take care of herself and to make some independent arrangements for my dad. Good luck to you. I understand how stressful this is. |
Anonymous
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What can you help her with that isn’t for him? Cooking. Cleaning. Shopping.
Will she let you “babysit” while she rests or takes a shower. The way to avoid medication confusion is to chart everything on a yellow pad or something. Maybe she can “train” and “supervise” the nurses? Can you suggest a written down schedule that would leave her in charge but delegate some tasks in a systematic way. You might suggest that running herself ragged doing stuff that can be assigned to other people is preventing her from doing the one thing only she can — being his emotional and social support and the one person (other than family) who he can count on to not abandon him, as she has amply demonstrated. The problem is so often in the other direction. This is a tough situation. PP’s may be right about the chemo as palliative care. I have the sense she’s in panic mode and the frenetic activity is an outlet for that. |
Anonymous
| Take her to the doctor she needs to start eating. |
Anonymous
| As someone whose parent had PC, this just sounds insane to me. Why on earth would you put a person with PC on a feeding tube? It's just extending the misery. I am so sorry OP this must be incredibly tough, but there is nothing you can do here but wait for the train to crash. |
Anonymous
This is my thought too. The only surgery I know associated with PC is the Whipple, which is incredibly hard on the body and takes a long recovery. Add dementia, it's just a lot. I'm sorry OP, but your mom has to come to the conclusion that what she's doing is simply prolonging the suffering for your dad. |