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?
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.
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.
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.
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.
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.
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 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?
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.