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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?

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MIL is stage 4 double-hit lymphoma, now in her brain, and being treated with steroids. The steroids just made her moods, her irritability, her demandingness about 100 times worse.

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.
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Divemdeb Dec 2021
The oncologist told her palliative care chemo wasn’t a cure but that’s as far as he takes it. Her usual response is that she is going to be the miracle patient. She was stage four when first diagnosed 2.5 years ago with metastatic breast cancer. She has Mets in her bones (hip, spine, ribs, pelvic, etc.) It seems a grim prognosis. I just don’t want to be resentful. I hate coming home when I get the slight break while running errands. Her mind is just running 100 miles a minute and she snaps into anger quickly. It just sux period.
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Does your mother have the money to hire a companion aid? Someone to be a barrier between you and she, to divert and distract her? Some of her behavior sounds like Shadowing (her following you around). You don't have to hire someone permanently, just long enough for you to get some rest.

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.
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Divemdeb Dec 2021
She has the money to hire a home health aid but insists she doesn’t need one. The Dr says she can’t live alone and the social worker says if she refuses a home health nurse, it’s her prerogative. I’m between a rock and a hard place. The home health social worker was ordered by the oncologist so why aren’t they on the same page?
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Are the cancer treatments worthwhile? It seems cruel. I’d have an honest talk about the expected, realistic outcome vs the horrible effects of treatments.
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Divemdeb Dec 2021
That’s exactly what I said to the oncologist. I was angry and took it too far by accusing him of continuing treatment for the money. He was furious. My Mom is dead set on continuing treatment. The problem lies with me being able to tolerate her behavior as a result from the side effects of the steroids.
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I hate to ask but..
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.
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Divemdeb Dec 2021
Thank you for the contact’s, I’ll call them in the morning. He won’t give me a prognosis he just says she’s responding well. From what I’ve read, metastatic breast cancer life expectancy is average 3 years (she’s on 2.5), palliative care chemo works for 3-12 mos. I’m not wishing her dead, I’m just physically and mentally exhausted.
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Have you actually asked her what she wants? Does she understand the likely progression of this, and its effect on you and family? My mother in the same situation had her oncologist pushing for more difficult treatments, and her physician talking to me in the hospital corridor but not having the guts to front the oncologist or be realistic to my mother. I cornered the physician alone with us in her room and asked for real information (it was an extra 6 months of life with chemo virtually all the time). My mother (aged 78) immediately chose to stop the treatment, and go home. She died a month later in her own bed, and I’m sure she had no regrets. I moved in with her, and the time we had together was as good as possible.

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
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Divemdeb Dec 2021
She wants everything available to survive. It’s very odd but she is working out with a physical therapist once a week. She does her exercises daily. He works with a home health company but he usually dodges my questions and tells me to call her Dr. She refuses to give up. She did the same with my Dad and step Dad. When she first started chemo, her Dr said it was a last ditch effort. She responded well to treatment and her cancer antigen levels decreased significantly. The problem I’m having besides no real answers from the Dr is that he tells me she can’t live alone but won’t provide any advice or direction on how to continue to live with her. It feels like if I can’t care for her she’ll die. That’s just an extreme amount of pressure.
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Tell her that you can’t keep doing it because it has become too hard on you and the children. Tell her that she should have a carer, offer to organise it, provide her with information in writing about how to organise it herself. Tell her that if she doesn’t, you may have no option except to report her to APS if she is not coping. Ultimately it’s her choice, so long as she is legally competent (even if stupid – both of which sound spot on). It is NOT her doctor’s choice. If you move out and he is upset about it, leave it to him to sort it out.
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Divemdeb Dec 2021
That sounds harsh but you’re right. I’m going to have a Dr test her memory. I’ll go from there. Thank you!
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You mention a stepfather age 91. Is he also in the house? You wrote that he refused to give up, also. Just curious.

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.
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Divemdeb Dec 2021
My step father was the same way. He passed away last year. I am the only child. I’ve asked my Aunt (her sister) to come down and help a bit but she doesn’t want to. She tells me to hire a nurse but when I’ve called on a home health nurse, Mom sends them away. There is a total disconnect. The oncologist ordered physical therapy through this home health company. Home health says if she doesn’t want help, she can’t be forced. The Dr says she can’t live alone. I tried backing off offering less help and finding things to do during the day. Hoping this would force her to realize she needs a nurse but it didn’t work. The kitchen would be a disaster area and she fell the last time I left her. I feel there has to be a certain legality determination.
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.
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Oncologists/social workers love to hear that there's FAMILY around. It makes them think that everything will just be ok no matter what they do. They would pay attention if you told them that by say March 2022, you will be leaving due to mom's worsening behavior and that Mom has no plans to hire her own aides.
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This steroid behavior sounds just horrible. So sorry you're in the middle of this!

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.
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Did I read correctly that your Mom has dx of dementia as well?

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.
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