Follow
Share

My mom was recently diagnosed with metastatic breast cancer HER 2+ it has moved to her lymph nodes and bones. Her mammogram didn’t show anything six months ago and now it’s the size of a baseball. She lives independently with my step father age 91. I am raising my three grandchildren ages 9, 7, and 6. I’m trying to get an idea of how quickly this is going to go down. I realize there is no cure. The only treatment she is receiving is hormone and bone therapy. I just don’t know where to go from here. I’ve asked them to move into my home but they wish to stay home. Now what? How do I manage her care and how do I take care of my step father after she’s gone? Yes, I’m panicking. Is she looking at six months? Six weeks? Six years?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Only her doctor can answer this. Are you her POA for health care? If not this needs to happen now. Then you need HONEST answers. If you are going with palliative care, which it sounds as though you are, you need to ask your doctor for an HONEST prognosis, you need to beg for hospice and tell him you understand that he may not think she has only 6 months, but you can get 6 months more if she hits that mark. You need both the care and the support. This is sounding like it is moving like a wildfire. But nothing is for certain in anything like this. You are very busy. You are going to have to see that they get some care. I think you are trying to move too far ahead thinking of your step father. He may have to go into care, but taking him, devoting him to the time he needs with a 9,7, and 6 year old is not fair to you, but ALSO not fair to the children. And to even GO THERE now, to think about that, while you are dealing with this???? I can only say , pull back now into THIS day. Do what you can. What you can do is to get the Power of Attorney for Health Care, talk to the doctor, get hospice to deal with the pain and care that will be needed. LEVEL with the doctor what is on your plate. If there is other family OR good friends, call a conference with them at a local diner and trouble shoot You need HELP. Call it in now. But take it one day at a time. This is going to be literally and figuratively a painful time, and you must stay in the day. There is way too much on your plate. We need now to focus on how to GET HELP. Familial or Hospice or both. I am so sorry. And of course you are panicking. You will. And often. And get depressed, hopeless, anxious. Let yourself. Then pull back and deal with what is happening this moment. I am SO sorry for you all.
Helpful Answer (3)
Report
Divemdeb Sep 2019
Thank you very much
(0)
Report
What kind of hormones? Hopefully no Estrogen. This feeds tumors. I am surprised they didn't remove her breasts.

Everyone is different. I'd say the cancer is moving quickly if no sign 6 months ago.

I suggest you take things one at a time. Mom wants to be in her home where she is comfortable and its familiar. I suggest Hospice be called in to evaluate. Mom will receive an aide to help her with bathing. A nurse wil, come 2 to 3x a week.

Now you, think you have enough on your plate with 3 children. Do not take stepfather in. Does he have children of his own? If so, let them handle his care. If not, there are resources and options for his care.
Helpful Answer (2)
Report
Divemdeb Sep 2019
Thank you very much
(1)
Report
If it were my Mum, I would:

1 Make sure she has her legal documents in order.

2 Talk to her doctors, find out what her prognosis is from the people who will have the best idea of it.

3 Talk to Hospice, she should be eligible for Hospice care

4 Do not move her into your home. It would not be fair to your grandchildren to have to watch her die in their home.

5 Have a discussion with your Step Dad as it what his plans are moving forward.

Why do you feel you have to manage her care?
Helpful Answer (6)
Report
Divemdeb Sep 2019
my mom still has the illusion that she is going to get better. If I go into the Dr with her and ask the prognosis, she’s going to lose the illusion of hope. I’m not sure that would be good for her. On the other hand I’m not sure the Dr can talk to me privately without her consent. Quite a conundrum. I agree with you on moving her into my home. There is money for private care but until she realizes that she isn’t going to get better, she won’t even discuss it. My step father moved here from England. He has a son nearby but the relationship is strained. Their last visit he punched my step father. His mental capacity is great one day and off the next. It’s my mom’s wishes that I take care of him if anything were to ever happen to her. How do I go against that? I own a rental home next door to me which will be vacant within a week but they both refuse to move. I did try to press them both on the possibility that this may be fatal but they both got upset and said that I need to stop having a negative outlook.
(1)
Report
See 1 more reply
Divemdeb, I'm so sorry to learn of your mother's diagnosis, and of the turmoil that you're facing in terms of decision making.

As to the speed of metastasis, I would contact your mother's oncologist and ask for a HIPAA form for your mother to complete so that you can speak directly with her oncologist.   This is quicker than getting the DPOA, and medical POA (or Living Will), Will and/or Trust in place (although these should definitely be on the short list of tasks to accomplish).  (If you need help finding an attorney, just post back).

You'll want to know the stage at discovery and the stage now.   Cancer is staged, from Stage I to Stage IV.   Her oncologist can help quantify the rate of metastasis.    And it does seem that from nothing to baseball sized now is a rapid rate.

My sister's cancer was HER2/neu positive.    At that time there were certain protocols for that type of cancer, but that was back in the early 2000s.

Some things  to consider:

1.   Gilda's Club.    I visited our local club after my sister died and was very, very impressed with what they had to offer at that time, including meetings of people affected by various kinds of cancer, as well as support groups for family.   It's an all inclusive approach - the whole family, including the individual affected plus his/her relatives.

There's a Gilda's Club in Atlanta, which if I'm correct might be about 30 miles S of your area.    You could contact them and find out if there are any clubs that are closer.

https://www.cscatlanta.org/history  

2.  CURE, a hard cover and online magazine free for those batting and/or support those with cancer.  

https://www.curetoday.com/ and
https://www.curetoday.com/publications (for the magazine)

Section on breast cancer:
https://www.curetoday.com/cure-connections/breast-cancer

HEAL is apparently a new magazine.  
https://www.curetoday.com/publications/heal/2019


The fact that the cancer has advanced to your mother's bones raises some issues that you should plan for.  They affect ability to stand and walk, but your mother's oncologist can advise you more specifically since she'll have the x-rays and other tests.

I say this b/c I never thought we would need oxygen (lungs were affected) or a wheelchair (ability to walk was affected), and in retrospect, I would have planned for these sooner.   They were provided by a DME though; there was no out of pocket cost to us.

But the issue was mobility, inside the house and going out for chemo and/or radiation.    My father built a system of support to get out of the house, but the issue was also one of strength.

I raise these not to frighten you but to plan ahead, especially with Winter coming.   A house attached to a garage is the safest b/c transition can be made from the house directly to the garage w/o going outside.   

What I would do is ask her oncologist what DME she would normally recommend.  I had to replace the first one b/c it was so uncooperative.    Research wheelchairs (you'll want one with removable arms and legs).  

Ask about progression estimates, i.e., when other organs and mobility will be affected.    Research hospice companies, including nonprofit (and religious) ones.   It will help lower the stress if you have this research done when the time arises for additional levels of care.  


As to the stepson, I would never consider taking care of someone who became physically abusive to his father.   Please DON'T even consider it; it will be nothing but a personal and probably legal nightmare.    He needs to find his own path and take responsibility for his actions.

We were in total disbelief and unprepared to go through the end of life challenges when my sister died.   There are a lot of things I would do better if I had been more informed.  That's why I've addressed these painful topics now.  You have quite enough on your plate w/o reacting to changes that might occur.

Lastly, plan downtime for yourself and husband to cope with the challenges.  
Helpful Answer (3)
Report
Divemdeb Sep 2019
Thank you very much. I will check out those websites. My mom was diagnosed with stage 4 metastatic breast cancer HER2+ from the beginning. She noticed a lump in her breast a few weeks ago and we just got the results back from all of the tests last week. Chemo and radiation were not on the list of options from her dr. That’s what scared me. It sounds like palliative care. There are some tough discussions to be had but she isn’t willing at the moment to realize their importance. I’d really like to know how this is progressing from the Dr but I don’t want to dampen her spirit. She has the attitude that she will beat it. My first inclination is to sit back and wait for the symptoms to worsen but I don’t know how quickly she’ll decline.
I would never consider caring for the step brother. My concern is for my step father age 91. He says he’s not leaving his house until he’s dead. When I try to ask questions about it, my mom gets upset because she thinks I have a negative attitude. Thanks so much for your response.
(1)
Report
See 1 more reply
Deep breaths....lots of them.

We all need to believe we are going to get better when we get that cancer dx. At some point, reality usually sets in and the patient accepts the prognosis.

Just make sure mom's paperwork is all in order and that she (if she so chooses) has her funeral planned and paid for. (You don't do this in one visit--and hopefully she already has time to simply enjoy visits with you, not just ones that makes them feel they are being bombarded.

Once all the necessary but boring legal stuff is dealt with, just enjoy the time left with mom.

Other posters have made better comments than I can offer up. Just remember that mom is NOT cancer---I am currently battling it and have been so surprised at the lack of support from my FAMILY. My own mother has not spoken to me for over 4 months.

You don't know what your mom's options are, but at age 81, she has already lived a life past the 'norm'. Just love her.

As for your step dad---your hands are full--I would look for suitable living arrangements for him unless he's functioning well at age 91. Personally, I wouldn't even consider bringing him into my home. You have the gift of some time to make plans.

I'm so sorry for your pain. You obviously love your mom. Things like this just knock the wind out of us for a while.
Helpful Answer (5)
Report

You really need to be able to talk to the doctor to get a better idea of to expect in the coming months or years. I'd suggest that this discussion is best without your mother present as the doctor may recognize that she isn't dealing with this at all and may not be as forthcoming. The doctor's office will have a HIPPA form that she can sign that says the doctor may discuss her treatment with you. You can explain to her that you need to fully understand how to support her during the treatment and you need to talk to the doctor. She doesn't need to be present during the discussion. Don't make it seem like it is anything but what you can do to help her "recover" from this. Depending on the cancer, even at stage 4, she may live years so without more info it isn't the time to call hospice or start making any dramatic plans.
Helpful Answer (3)
Report

Sometimes you must accept you are seeing the future clearer than your ill LO, at least initially. Denial often comes before acceptance. You might have to wait for your LO to catch up with you - and that is in no way a bad thing.

My sister was diagnosised with stage 4 lung cancer. At the time of her diagnosis, 90% of people diagnosed in stage 4 did not survive one year and none survived to a 5 years. So I knew regardless of how treatment went initially, it was only a matter of time before she would be gone. I cried in private and then being a "planner", started making lists of things that could bring comfort or help on the difficult road ahead.

When radiation and chemo treatments were scheduled, I purchased several sets of comfortable and pretty pajamas along with a couple of robes in medium (her current size) and small (her previous size before she added some weight in her 40s). She told me the medium sets fit and she loved them all but I needed to return the small sets. I just said OK and took them home with me. Five months later when a pair of pajama pants were too loose to stay up she told me she was ready for those small pajamas. Saying she realized why I ordered both sizes as soon as she started dropping weight, she asked where I had stuffed her small pajamas.

I suggest you start developing contingency plans but not sharing them. Is there a nearby neighbor or family member who could stay with the grandchildren at your home after school or if you needed to get over to your mother's on short notice? Is there another adult living in your home if you need to leave during the night? A babysitter if you want to accompany your mother to her treatments or doctor appointments?

From a purely practical viewpoint, having your mother and step-father in the next door rental house would be much better for you. It eliminates a lot of travel time and allows you to be available for your mother while still supervising the grandchildren; no babysitter is needed for you to go next door during night. If resources allow, maybe you could suggest the rental house as a temporary living arrangement during treatment instead of a permanent move? They may end up moving into the rental house in stages.

If your mother and step-father choose options that make it difficult for you to care for the grandchildren and support them, I recommend putting the grandchildren first. The adults, even when ill, have a responsibility to consider others and make choices beneficial to the entire family. When/if they don't, then they should reap the consequences and not the kids.

Good luck and God bless and comfort you during this very difficult journey.
Helpful Answer (5)
Report

My mother was diagnosed with breast cancer at 81. She had a mastectomy & oral chemo - that was it.
Due to her age & lack of estrogen production the cancer was not metastatic. She was declared cancer free about 6 months after her mastectomy. She went on to live until 89.
With “mets” to the bone your mom’s prognosis may not be as good as my mother’s.
Helpful Answer (1)
Report

This is a guess based on my experience with three cancer deaths, plus the information you have given – rapid growth of aggressive cancer, extensive metastases, chemo and radiation not on the doctor’s list of options. She has 6 months max. She is not going to beat it, and if she pushes for lots of treatment, it will make things worse for her. Her best option is acceptance, and to make the most of the time she has left. Think carefully about it. Sometimes the patient feels that they are letting the family down if they aren’t ‘positive’, while the family is thinking that they are letting the patient down if they aren’t ‘positive’ themselves. Everyone is lying, and it doesn’t help at all. Truth means that you can all weep together, and then organise things as well as you can. It's a very difficult time, but you will all get through it with courage.
Helpful Answer (3)
Report

I'm responding to what do you do when mom has asked you to take care of dad no matter what. You agree. There are more ways of "taking care of" than hands-on care. You will be able to hire caregivers to take care of him and you will oversee their work. If he needs 24/7 care, you will hire that or place him, using his own money of course. Absolutely you will take care of him. Agree and allow mom to focus on her own needs. You realize that Step Father will have to agree for you to take care of him once he's gone - if he won't, then you have no control over him at all, and that does not break your word.

Right now, I think you get Mom's POA and HIPPA taken care of. You will need to have some way of accessing their money to be able to pay the bills for caregivers who you will need to hire to tend dad while your mom declines. They will need a housekeeper who can cook for them from an agency so there are no unexpected days you have to cover. Of course he will obeject, but you tell him it's for mom, that you have to hire for a min number of hours and he might as well make the woman work for her pay! As time progresses, he will need his own aide and it will be easier for him since he will have had an outsider in for so long.
Helpful Answer (4)
Report

I was thinking again about your heart-breaking situation, and hoping that your family is going OK. Best wishes, Margaret
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter