Right?

forbarbara

I just want someone to tell me I’m right (yes I’m venting about family and MC staff). My guiding principle is “if it doesn’t bother her, don’t fix it”.
MIL recently lost her upper dentures but she doesn’t realize it and doesn’t miss them. No action needed. What do I hear from MC staff? I should get her fitted for a new bridge because they miss her beautiful smile.
More seriously, a lump has been growing in her breast for several months. I said no diagnostics - mammogram or biopsy. The breast is much worse now, MC doc says it’s cancer and asked me to call in Hospice. Hospice can’t take her unless they see documented change in MIL’s condition. MC says they didn’t document growth of lump/tumor because I refused the mammogram. Now family wants diagnostic work too. I said no - how would this help MIL? Treatment is out of the question. Her advanced medical directives and MOLST are very clear about this.
These people are making me feel like a monster.

ronda b

Get her diagnosis so hospice can take over. She doesn't have to have it treated.

M1

you have a diagnosis, it’s cancer. That should be sufficient for hospice and I would push them on this. No point in a biopsy. You’re absolutely right. If they continue to give you a hard time I’d ask for a meeting with the hospice physician directly.

Untreated breast cancer can be painful, she needs to be medicated for it. Argue that as well.

SusanB-dil

You are doing great! Hang in there… ((hugs))

housefinch

Agree with @M1 – putting her through imaging and a biopsy would be stressful for her and unnecessary.

Quilting brings calm

I think you should find another hospice company. Hospice is for people with a terminal condition ( or some either things such as advanced dementia). Cancer is a terminal condition- doesn’t matter what her condition was previously. Or how long it’s taken for the lump to get this size.

harshedbuzz

@forbarbara

A dear friend of mine had this same situation with her 90-ish mom. Prior to dementia, her mom had opted out of routine mammography around 80 saying she'd lived a good life and wouldn't treat breast cancer having nursed family members through it. As an only child and POA, my friend was the primary stakeholder was able to honor her mom's wishes despite her own conflicted emotions without the judgment or interference of others.

Once the cancer diagnosis was made, albeit based on exam, rather than biopsy, my friend continued with her PCP/HHA team for about a year before adding hospice. She regrets not bringing in hospice sooner as she had great support from people who worked in situations where cancer and dementia were both present.

I wonder if the family members appreciate what they are asking for. A mammogram might be followed by a ultrasound and then onto a biopsy and full body imaging to look for metastases. That's a lot to subject a PWD to in the context of the decisions she's already made for herself when mentally competent.

HB

H1235

Wow, cancer on top of dementia, trying to respect your mom’s wishes. Like that is not enough they are making you fight for what she wants and making you feel awful for doing it. Gut wrenching.

forbarbara

thanks everyone. As usual you’ve helped me get grounded and focused. You are truly my best defense against the bulls—t from family. I knew this was a dysfunctional group when I married into it 45 years ago but I’m still surprised by the hostility I’m encountering. When MIL asked me to care for her, I asked why not one of them. She said “ you’re strong enough to deal with them all”. Most of the time.
I’m going to concentrate on getting Hospice back involved (small town, one Hospice). This will be our 3rd go with them, and once you get through the intake process they are enormously helpful and supportive. So it’s definitely worth it.

forbarbara

HB, I was trying to convince myself that it wasn’t that important to get Hospice back involved. Thanks for reminding me that it’s the best thing I can do for MIL.

forbarbara

Success - and without putting MIL through any procedures. Not to be gross but the hospice intake nurse took one look and said yup it’s cancer. I am so relieved but now the reality is hitting me - yup it’s cancer.

kclawson916

https://alzconnected.org/discussion/70813/right

I read these stories and my heart breaks. I worked in MC for years. Our Resident Care Director always fought for what was best for the resident. You have her best interest at heart and not to mention legally. Might I suggest if you haven't spoken to the administrator make an appointment. Take all her paperwork and let her know you are not happy. A single thought of losing a resident usually gets attention. You making that appointment will hopefully send a message.

JDancer

Glad you got her on hospice with any procedures. Having had a breast biopsy, I wouldn't wish it on anyone. You're an excellent advocate for your LO, she chose wisely.