We moved in with my Mom when she started palliative care chemo. She’s 83, stage 4 breast cancer. Her mood after chemo is off the charts. The Dr says it’s the steroids but she is so volatile as a result of the steroids. I’m exhausted. I’ve had custody of my three grandchildren for years so they obviously came along with us. I’ve explained my concerns to the oncologist and she is scheduled for an appointment with the neurologist for dementia testing but in the meantime I just want to curl up in the fetal position and hide. She had chemo yesterday and didn’t sleep a wink. She came hurling out of her room the minute she heard me up getting kids ready for school. She started rambling off a to do list and continued on with a Christmas gift list on the low side of $12,000. I told her we would speak about it later but she followed me around the house while I had kids brushing teeth, etc. I’m losing my mind at this point. I called the Dr and they just said it’s a result of the steroids. I already knew this but it’s gotten to a terrible state in the house. She receives chemo every Tuesday. So the steroids keep her mind racing for two days. The Dr has no answers for me. I asked about buying a house close by so we could go home in the evenings but he said she can’t live alone. I’ve really had it out with the oncologist because he just gives me these stern “non answers”. Sadly I was very rude and wish I had chosen my words better but I’m at a tipping point. I can’t live like this and she can’t continue chemo if we move out. What’s next?
If so, that is a huge game changer!
If you break your leg, your brain can can process the sensory input - you can see & feel it. You are aware of it.
If your brain is effected, your brain may not know it is effected. You may be lacking judgement or memory but NOT be aware of it.
If your Mom has lost ability to care for herself - she will need help. If she has lost insight into her situation, she will not realise this. Does this make sense?
If she needs help, there is no rule stating it must be ALL provided by one person. By you. That would be rediculous. What if you had 2 parents, steps + multiple aging aunts? One poster did...
The Doctor has to protect people's rights. People can choose to live how they wish *unless they have lost capacity*. This is a serious step & must be noted by appropriate medical staff, often after an extensive neuro exam. Even then, many can still be deemed capable to make 'lifestyle decisions' for themselves. Living alone, refusing outside help would be considered a lifestyle choice (a BAD choice, but nonetheless hers to make).
Many have been where you are. I see your options as these - think them over & ask ask ask all the questions you need;
* Continue as you are until you really can't (your collapse/illness/accident)
* Leave & let Mom live alone immediately. Be firm. Set boundaries. ie one visit a day + 1 check up call or whatever is reasonable for your family. Mom must accept help for everything else, starting now.
* A middle way. Hire the help you need. This will be a trial. If she cancels again, move to option above.
* 2nd last resort: discuss capability with her Primary Doctor & apply for emergency Guardianship if warranted.
* Last resort: await a crises. Once some event/fall happens, call EMS & transfer to hospital. Move out. Explain to hospital social worker she would be discharged *Home Alone*.
Often with uncomplient elders, a day or so of missed meds, minimal food, lack of drinks causes dizziness & dehydration quite quickly. Then boom. You swing your plan into action.
PS I realise this sounds very harsh. To leave an old person with ?dementia & serious cancer alone. Obviously the poster needs to assess how dangerous that would be! But looking up from.the bottom of the slippery slope to see the wider view is needed. If it is not working - change it.
Well, you really need to put your grandkids first. How are doing with this move and how your mom is behaving? Seems like it would be really hard on them. And you! Caring for 3 grandkids AND your mom? Way too much to handle!
I really fail to understand people who want to do EVERYTHING possible in order to live a little bit longer but have a poor quality of life. Forgive my ignorance but are steroids given because of the chemo? Can they be reduced a little to perhaps knock her symptoms down a little?
I would push harder on having helpers. Not asking your mom to agree but telling her this is the way it is going to be. You need to get out of the house, especially on days when she's ramped on steroids. Hire help (with her $) and leave for the day. Tell her you have things you need to do and it's unfair of her to expect you to unable to do your errands, get your haircut, have lunch with a friend, etc. She might not care about your needs or might be unhappy, but so be it. Right now, you're unhappy.
Best of luck.
Do you have HCPOA for your mother? Sounds like she is still legally competent to make her own decisions?
While I understand your complaints re the oncologist, YOUR wellbeing isn't part of his responsibility, as your mother is his patient, not you. He said she couldn't live alone, and you moved in. No problems with the situation, as far as he is concerned.
I would go to YOUR doctor, and get it in writing from him that YOUR health is being adversely affected by the caregiving. Even if it doesn't do anything, it should help you to get rid of any (misplaced) guilt you might have.
YOU will be the caregiver as long as you allow yourself to be taken advantage of.
Do you have any siblings? Not that I think ANYone should become a caregiving slave, but I'm always curious to learn how one sibling usually becomes the one to do it all.
I really appreciate your describing the Dr’s role in this. I hadn’t thought of it that way. I wish her Dr would have just said that from the beginning. It seems the patient is the only person with rights? Meanwhile I can be legally held in this position. She has dementia and she woke me up at 5:00 am because she heard a toilet running this morning. There wasn’t a toilet running. I think my best bet would be to have her visit a neurologist and see how she scores on the test for dementia. Maybe this can give me a final answer on wether she can be left to make her own decisions. Thanks a million for bringing it down to the brass tax.
If you are getting the run-around from the only doctor you both are seeing, get a second opinion for you and for your mother. Just remember that more treatment means more money. My mother’s GP at home at the end was a whole lot better at looking after her. Yours, Margaret
What is her projected prognosis?
Is the Chemo actually worth it?
I am a true believer in Quality of life over quantity of life.
If the chemo is actually going to help then I say go for it and continue with the current treatment.
But if the chemo is making her miserable and it serves no purpose if I were her I would choose to stop.
If she wants to continue I would look to hire someone that will come in and help her out. But you will have to set boundaries. (I know hard to do when you know someone is dying and you have to say "no, I can't do that now, we can talk about it later" )
Is there someone else that can come and stay, another family member if she can not hire someone?
And have you contacted the American Cancer Society? They may have some suggestions, they may have volunteers that help out. 1-800-227-2345 and or www.cancer.org
Another resource might be:
American Institute for Cancer Research. 1-800-843-8114
And the last one:
CancerCare Inc
1-800-813-4673
This organization "Provides free, professional support services to help all affected to cope with and manage the emotional and practical challenges arising from cancer. Offers counseling, support groups, education, publications, workshops and financial assistance."
www.cancercare.org
🙏 for your mom and your family.
What happens to a person like your mom if she didn't have anyone to live with her? Would she be in a rehab facility? So, would this be an option? Or, have social services for your county to come in to do an assessment to see if she qualifies for any in-home help. I am hoping you get the solutions you need to keep things in your life manageable while helping your mom during this very stressful situation.
Her onc owes her and family a realistic outcome of what a cancer treatment can do, especially if it is for a cancer that's been treated before. Ask the onc for specific studies saying exactly what PFS (progression-free survival) and OS (overall survival) are for people with exactly the type of BC she has, and what exactly the complications could be.