I'm not sure I'm posting in the right forum, but here it goes!
My Mom has two types of unrelated cancer. One of which is kept stable with medication and now, unfortunately, lung cancer. Although she has the less aggressive type of lung cancer her treatment options were severely limited and after a week or so of radiation she decided she didn't want to continue with it. It's her decision to make and although family and physicians don't necessarily agree, we respect her choice. Her oncologists say they can't give a prognosis because it's different for everyone, but her primary care physician has said maybe a few months.
She is utterly miserable. She suffers with depression anyway, but she really is just fed up now. She is at home, doesn't get out of bed, and barely eats. Hospice is involved, but they're under-resourced and have no beds (welcome to Europe!) so the home care nurse visits once a fortnight to see how she is and that's it. We lost Dad a couple of years ago and we're a small family with me as the primary caregiver. She would like to go to some kind of nursing home etc. so I don't have to care for her, but there isn't anything suitable where we live. Hospice will take you if they have a bed and you have a couple of weeks max to live, and regular nursing homes don't cater for someone with the range of illnesses she has. I want her to comfortable and happy (?) for whatever time she has left, but she is just so sad I don't know what to do.
There's also the issue that in a way I don't think she's processed exactly how sick she really is. She's 100% on the mental front, but some of the things she says make me think she doesn't quite get it yet. I can't imagine what a terminal diagnosis does to a person so all I can do is be there for her. She asks every day why she's so sick, when will it get better etc. etc.
Has anyone else been through this? Did anything help? Thanks so much.
She has been referred to psycho-oncology services via her oncologist and is awaiting a meeting with them. Ordinarily she would have seen a psychologist maybe once a month for other issues but hasn't seen them in months and hasn't expressed a desire to either. She is weak and sleeps a lot, never goes farther than the bathroom and is really just so, so down.
All her immediate family are overseas bar my sister and I (I usually live 90 minutes away but have been staying with her indefinitely since her diagnosis). My sister barely helps and outside of that no-one does, it's just me and Mom 24/7. She says she feels a burden and wants to go into a facility so I can live my life but there are none. Support services are non existent beyond someone patting my hand and acknowledging how awful it is.
I don't even know what the trajectory of this is likely to be, and I'm not sure how much Mom would even want to know. Oncology are very non-committal about everything and the primary care physician gave me the 'few months' talk in private. I think it's important we have a conversation about what we're going to do going forward but no-one as yet has told her how long/short her time might be. I think talking to a professional would be great for her, it's just trying to access the services when she's housebound and can't/won't get out of bed.
Hum. I don't know what to suggest.
Macmillan do publish a massive catalogue of information booklets which you can easily access on line. But if you can't get psychological support to her, and she's not ill enough for hospice services...
Is she a keen churchgoer? Any pastoral support possibilities there?
I want her to be as content and comfortable as she can be but have no idea what that would look like for her. She gets upset if we talk about care plans or the future. I am slowly losing my mind and seeing her suffering is so difficult.
Selfish? Not to be wanting any of this? I really don't think so.
I'm glad you've found this forum, anyway! The people here are just lovely.
Are there any facilities near your own home? Would moving her closer to you be a possibility?
How far out is the psycho-oncology appointment? It sounds as though perhaps your mother needs an inpatient work up of what sounds like a very serious depression.
I'm also concerned about the "when am I going to get better?" questions? It reminds me of my mother, who has had a stroke and subsequent vascular dementia. She has lost most of her ability to speak, but sometimes she will ask me "why can't I talk?" and when I tell her she's had stroke, it's very fresh news to her.
I'm wondering if, although in other ways your mom is 100% on the ball, she's lost some executive functioning bandwidth, either due to the cancer, stroke or some other organic brain issue.
At the last visit with the oncology team they said they would admit her for more testing in general as they were concerned about her general weakness but there are no beds so it's a waiting game for that as well. Mom is the world's worst patient even with a cold so with the depth of how sick she is she's a tough crowd if you know what I mean. Moving her closer isn't really an option as I live in a very rural area miles from any hospital/care facility and she lives just down the road from one of the largest hospitals in the country.
How do people do this and not go crazy? I don't want to resent her or be snippy with her (which does unfortunately happen occasionally) and I know she feels guilty that I'm caring for her as she says it all the time. She always says she didn't have kids so they'd look after her and I know she can tell how unhappy I am, because she's a great Mom and can see it even though I hide it.