I'm not cut out to be a caregiver, but here I am. Any advice?
I'm caring for my MIL who moved in with me last year. Here's my story, I hope it's not too long or convoluted, please bear with me.
My husband and I bought our retirement home "in the lower 48" in 2012 after living in Alaska for over thirty years. My husband is still working in Alaska, less that 3 years till he can retire. In the mean time he spends as much time "down here" as he can. His father passed away in 2005 leaving his mom in Anchorage by herself. They were inseparable, married for 50 years and each others best friend. She wanted to die with him and was not happy that it didn't happen that way. We thought it would be good if she moved in with us so we could keep each other company and to take care of her when the time came. We have a great relationship for a MIL and DIL. I'm not saying it's all been a bed of roses. but I do feel fortunate to have the relationship we've had.
In 2008 she found a lump in her breast. When she told me about it I asked what she was going to do and she said "it's not bothering me, I'm not going to bother it". And that was it, for a while, till the tumor grew and started to ulcerate. She had gone to an oncologist in Anchorage but refused any kind of aggressive treatment but did acquiesce to taking an oral chemotherapy like Tamoxifen. The tumor did slow down a little but needed bandaging and was becoming more painful. She did ask for and received pain meds. She didn't seek out a new doctor down here until several months after moving in and in that time the tumor has grown substantially and now bleeds and weeps continually. Her new oncologist suggested hospice care after her third visit when mom repeatedly refused any kind of proactive treatment. Let me say this, besides the breast cancer Mom looked to be in fairly good shape, she's 82. Her mind is sharp and she cares(d) for herself in most ways, dressing, bathing, doing her own laundry. We contacted hospice and one of their nurse's came to visit and then a social worker and then another nurse all in a weeks time. All very wonderful, compassionate, caring women. I was very happy to have the connection and the support. Mom, not so much. She said she wasn't ready for all of their help and even when they offered to only come every two weeks mom said that was too intrusive. She called them up and quit the services.
The bleeding and weeping of the tumor is getting worse. The pain as well. She takes hydrocodone for pain and has increased the amount. Some days four in an hour. (not every hour!) I hear, see, feel, smell what's going on and don't know what to do. When I bring up the subject of making a doctors appointment or getting back on hospice she changes the subject. Thankfully, she has an appointment to see the doctor this Thursday and has said she'll do whatever they suggest. I just hope it's not to late for them to do something to help her. Oh, and she also mentions "taking matters into her own hands" if they can't do anything to help. That scares me to death! (no pun intended)
I'm at wits end. I don't know what else I can do. Any help or suggestions would be greatly appreciated.
You have taken care of MIL and respected her decisions. Nothing wrong with that. Good luck!
She may not be willing to discuss the issues with you if she hasn't seen your MIL yet and has no HIPAA authorization. If so, try to find an excuse to go with MIL and raise the issues, privately if necessary.
Sometimes people are in so much denial about cancer and just can't face up the fact that they will need serious treatment. MIL may have just decided that will be her course of (in)action, and in that case all you can do is accept her decision.
If her husband were still alive, she might feel differently.
I was so hopeful after her doctor's appointment on Thursday. Her blood worked showed that she was extremely anemic and the doctor suggested a transfusion or taking iron supplements, MIL opted for the supplements. A tiny positive step. Doctor also suggested a wound care specialist and an appointment was set up for that. Another positive step. The other suggestion from the doctor was radiation which MIL actually said she would try. Again, another positive step. Before going to the doctor she said she would do what ever was suggested because she was tired of bleeding all the time and feeling so exhausted. I was feeling so good and hopeful that one or all of the suggestions she was willing to take might just make her quality of life a little better. Just to see her have the strength to get out of bed and enjoy a little of the day would be so great!
But now it's Saturday and she doesn't want to do any of it. My first reaction was, fine, whatever, I'm exhausted too! But now I'm thinking, no, by golly she's going to go to the wound care specialist to find out if she can get any special kind of bandages or topical medications to take care of herself better. And if we only go once, that's okay. And we're going to the radiation oncologist appointment as well, it's only a consultation anyway and they might tell her there's nothing they can do. But we're going to go and find out anyway. If she doesn't want to go after that, fine. But I feel like I've got to try and encourage her to try as well. It's wouldn't be so frustrating for me if she had dementia or Alzheimer's, well, it still would be but in a different way. She's still sharp in mind, does crosswords, keeps her own check book, does email and uses her own computer. It's just that she doesn't want to help herself, and that makes me crazy!!
Thank God for this website!!
It sounds like your MIL is pretty clear on wanting to let nature take its course. I'd also discuss a DNR (Do Not Resuscitate) order for her - so if her heart stops, they don't try to pound her back to life. Her doctor would have to sign it. Also be clear on any other wishes she has - no feeding tube, no extraordinary measures, etc. It sounds like it's time to have that talk. All you can do is support her in her decisions. You sound like a wonderful daughter-in-law.
The Tamoxifen can be a royal pain to deal with, some people have major side effects with it... been there, done that, hated those pills... and here I caught the cancer very early. I can't image what your mother-in-law is going through not having surgery. I don't know if she could still have the tumor removed or if that would even be a recommendation.
I wish you both peace in whatever decision your mother-in-law makes.
Thank you for your advice and kind words! We had hospice care for about a week, at the doctor's suggestion, but MIL thought they were too invasive and she didn't need all the care they had to offer so she stopped their services. We got the DNR order and it still is affixed to our fridge. She does not want any extraordinary measures taken and I totally support that. I just want what time she has left to be more pain free and as enjoyable as possible.
The palliative radiation sounds like the way to go, if she is a good candidate and will actually go to the treatments. Definitely something to talk with the radiologist about, thank you for that info!
As to the wound care, I agree you should follow up on that, as whatever wounds she may have could grow worse and become complicated.