Hi, I'm new to this forum, and to caregiving. My mother was diagnosed with stage four ovarian cancer in 2009 and after multiple runs with chemo and an overall decline there is no more treatment she can do. It has attacked everything in her abdomen and we are now doing palliative care at home (we live in a duplex, she lives above me). I'm a single mother with two young boys (1 and 3) and I am so busy with them that I worry I am doing enough for my mom.
I'm upstairs with her in the morning before I take them to school and them once I get home from that I feel like I'm just sitting around up here doing nothing. We talk sometimes, but mostly she just lies in bed and sleeps. Although I'm an only child, we don't have a super close relationship. We've never been very touchy-feely, emotional, etc. I make her meals (when she wants to eat) and give her her meds. I sit with her and we talk about business type stuff (what bills need to get paid, really just small talk). There have been a couple of times when we sat and talked, and cried together. But it's so uncomfortable for both of us.
I'm not working because I've been a stay at home mom, but am now going through a divorce. So I really need to get back to work, but there's no way I can leave her all day like this. I just really don't know what I'm doing.
I don't know if she's close to passing, or if it could be months. She's really strong and very controlling so I can tell the crossing over period is going to take some work. I expect it will be hard for her to "let go". I know all the signs to look for. I guess I really not ready for it to happen, but at the same time I feel like I'm just sitting with her every day waiting for it to happen.
Does Mom have some monthly income ... Social Security, a pension, anything? Could she pay you out of that to enable you to put off finding a job a little longer? Two small children and a dying mother are enough to occupy you right now.
She is on Medicare and also has full insurance benefits from AETNA, so I'm not paying for any of her expenses.
I guess what she is on is hospice, but they said they would only come once a week, until she starts declining. So perhaps she isn't as bad off as I think, or else they would have noticed (?). It would be great if the nurses would come more often, but even better if someone could just come and be here during the day to kind of "babysit" her. She has been accepting visitors (family and friends), but she gets very tired, so she doesn't really want anyone to come. I guess I'm just going a little stir crazy.
If she's on Medicaid, ask her case manager for a new needs assessment. If not, ask her clinic how to arrange this. Then arrange for in-home care for her based on the assessment. Medicaid typically won't provide 24/7 coverage, because at that point going to a nursing home is often more cost-effective. But they approved an aide 32 hours a week for my husband, for example. If you had someone else to stay with her that would give you some flexibility to go to work. Or (again, if she is on Medicaid) you may be able to get paid for providing care. This would probably not be enough for you to live on but it might be a reasonable short-term option.
She is on palliative care already. Might this be time to switch to the specialized palliative care called Hospice? The hospice nurses are very experienced with these situations and could help you assess when Mom is nearing the end.
Warm hugs to you, JennPeddy. You are in an extremely difficult situation. Do your best, and that has to be enough.