I'd say hire someone to take care of her during your 15 hours per week, and to preferably spend that time OUT of the home so that you are not burdened during your time together. You should contact your local Hospice for references you can use to find conscientious caregivers you can hire (or who volunteer) so you can have this time alone.

One night a week in a hotel room well away from your ailing mother (an hour or more, so you're not tempted to "stop by") would do wonders.

Who provides her health coverage?

Is it medicare/medicaid? Does she have a caseworker?

If so; does she qualify and/or is hospice appropriate? If hospice is not, talk to them about setting up respite care.

My Aunt and Uncle took care of my grandparents and had some home-health for cares (bathing), and respite care so they could maintain their marriage by getting out of the home.

She has Medicare and also supplemental insurance (I believe it is Scan, which is in CA only I think).

Right now, she does have a nurse who comes to help with the kidney tubes and stuff 1-2 times a week, but she doesn't provide respite care. I have a friend who recently went through this with his MIL, and he said insurance usually won't cover respite care. They had to pay for that on their own. Right now, my two sons stay with her while my H and I go out for UA time, but DS21 will be leaving soon and DS19 isn't very reliable, so we may need help at that time. Caregivers are very expensive. My mom has the money, but she's quite frugal about spending it. I don't have the money. It's something we need to sit down and talk about though, because obviously, if she gets to the point where she can't get out of bed and needs care 24/7, I simply won't be able to do it by myself. At that point, she'd either have to agree to pay for a caregiver or we would have to put her in a nursing home.

She doesn't qualify for hospice right now because she is doing chemo and radiation. Hospice will not help until she has ended all treatment.

One night a week in a hotel would be wonderful, but there's no way we can afford it. We are going to try to sneak away for two nights next week before my son leaves for his new job in CO. We haven't gone anywhere overnight just the two of us in about two years, so it will be nice to have a couple of days away. That's probably the last time it will happen though for quite awhile.

That's what I was thinking also.

How about following up to Dr. Harley with your circumstances?

The real issue here is not about empathy; it is about sustainability. One needs to sustain both the marriage and the caregiving. Sacrificing the marriage for the caregiving can cost you both. I am the primary caregiver of an autistic adult. I know something about how all this works.

What is needed most is better solutions, both for how to provide the mother's caregiving and how to care for their marriage. Praising sacrifice is not nearly so helpful as suggesting sustainable solutions.

I don't know what the answer is for writer, but she doesn't have to sacrifice her marriage in order to care for a terminally ill parent. There is no virtue in that. Caring for our parents/family can be done in several ways. When my dad was terminally ill, he had his own apartment and I made sure he was well cared for without sacrificing my marriage. I agree we should care for our parents in their time of need, but this can be done without ruining a marriage. Many people take care of their parents AND their marriage at the same time.

writer, I know you are in a difficult situation and I would strongly advise you to contact Dr Harley to see if he has some ideas for you.

Thanks Melody. I'm going to write to him this weekend. My DD5 has four days off from school and I think I'll have some free time then.

Fantastic writer. Let us know what he says.

Just an update.

My mom isn't doing well. We had to take her to the hospital Friday night because of severe vomiting. She spent four days in the hospital and then they transferred her to a temporary rehab facility yesterday. She is now incontinent and can no longer walk at all.

She started the chemo and radiation today. I had to go to the rehab facility, pick her up, take her to the appointment (we were there for about four hours) and then take her back to the facility. She is in diapers now and basically has a bowel movement every 20 minutes or so. I had to change her diaper while we were at the treatment since the nurses at the oncology lab do not do that. It was horrible to say the least and I almost couldn't get her off the toilet at all. The rehab facility will be transporting her to appointments from now on, but I still have to be there to help her at the appointment as they do not provide someone to do that. My mother is much larger than me and it is quite difficult for me to move her around by myself. Luckily she can still stand and transfer to a wheelchair, but I have no idea what I'm going to do when she no longer can.

She can stay in the rehab place for a couple of weeks and Medicare will pay for it. After that, she will either come home or have to go to a nursing home that will cost us thousands of dollars a month. She's already said she doesn't want to go to a nursing home, but if her condition doesn't improve, I don't think we're going to have any choice. Our only other choice is hospice, but she would have to stop all treatments in order to qualify, and she doesn't want to do that either.

For now, we are just waiting to see if the treatments help enough to enable her to come home. If they don't, then we are going to have to figure something out. The biggest issue is that we can't afford to stay in our current home if she is no longer living with us and contributing to the rent. And we've spent so much of our own money over the past few months because of my mother's illness that we don't have anything left now to cover a move.

Not sure how all of this is going to work out. But I am beyond exhausted and completely overwhelmed. Starting to get migraines again too, which I haven't had in years.

Writer,

So sorry to hear you (and your mom) are having a rough time. It sounds like you are at the "take it one day (or hour) at a time" stage.

It seems unlikely she is going to be able to come home, which she may not like, but I think you have to be realistic in what you are able to handle.

Have you talked about the financial options of various choices with a social worker? I do not think you would be responsible for the nursing home costs, your mom would need to use her assets and then medical assistance starts once her assets are gone. I think you can get better information about this from a good social worker, and I would imagine her current facility would have one available.

And hoping you and your husband are able to discuss the options, reach POJA, and he can support you! Because you will feel terrible if your mom is disappointed she cannot come home, and you will need his support I think.

Best wishes....

Both of my wife's parents and one of mine died of cancer. It is a horrible disease.

Your mother may be at the point where all care decisions are dictated by the disease. That happened with my father. We couldn't make decisions fast enough. It seemed that everything we did was too little, too late. My suggestion: try to get an idea from the doctors of how long they think a care decision will work. If you find out that more intensive care will be needed shortly, factor that into your decision. Don't just be reactionary. Try to think ahead. I know it is difficult to do, particularly when what the future holds is so unpleasant.

(((Writer))) I wish I had a magic solution to make things easier on all of you.

Hi writer,

Thinking of you and your family. How is everything going?

Hi. Thank you for asking.

My mom isn't doing well. She started chemo/radiation last week. She's had 6 radiation treatments and 1 chemo treatment. She was supposed to get another round of chemo today, but her kidney function wasn't good enough for them to do it.

Just taking it one day at a time. She is in a rehab/skilled nursing facility right now, but will probably be moving to an assisted living boarding facility in a couple of days. There's just no way we can bring her home at this point as she is pretty much bed-ridden and completely incontinent and I don't see any way that I could care for her at home. We're waiting to see if the treatments help restore some of her ability to function, but the oncologist said this may take another couple of weeks. Just taking it one day at a time for now.

Cancer really sucks. I know we all have to go eventually, but I really do NOT want to go in this way. It is horrific and painful and pretty much robs you of all dignity. It's hard to see my mom suffering like this. Sometimes, I really do just wish it could all be over, but then I feel guilty for feeling that way.

That is truly a totally normal feeling in the face of such a debilitating and painful illness. I hope you don't let yourself feel TOO guilty, because it really is normal to think that way. Cervical cancer especially is a bad one.

My thoughts are with you.

Thinking of you friend. Hang tough. You are a good daughter.

In more positive news, I went in for my first PAP smear in about 5 years a couple of weeks ago. Everything checked out fine and I am HPV negative! Since most cervical cancer is caused by the HPV virus, this means I have little chance of getting it myself.

If it's been longer than a few years since your last PAP smear, I highly recommend getting one for all of the women out there. If my mother had had this simple test, her cancer would likely have been caught much earlier. When detected at the Stage 1 or 2 level, cervical cancer has a cure rate of 85-95%. When it isn't detected until Stage lV, that number plummets to only 15%.

It looks like we are going to have to choose between sending my mother to an assisted-living boarding care facility to the tune of $2500-$3500 a month, or bringing her home and caring for her ourselves. She is being discharged from the rehab facility on Friday.

To complicate matters, my husband just informed me that we have about $250 to our name. We've been going in the hole ever since we moved here, since my mother's $400/month contribution wasn't even a drop in the bucket compared to the increased living expenses we incurred when we rented a larger place so she could live with us.

Not that financial issues are anything new. They've been an ongoing problem for the entire 20 years of our marriage. And we've never lived extravagantly. Far from it. Even all the years when I was working, we barely managed to make ends meet while driving around in old cars and living in a bad neighborhood in an old house that was falling apart.

I would have to say that the single biggest obstacle I've faced in trying to fall in love with my husband has been his chronic lack of any ability to meet my need for FS. And I have some pretty low expectations for that compared to most people, or at least I've learned to have low ones, since I know even low expectations aren't likely to be met.

So, now I have to decide between getting my mother the care she needs or winding up homeless after next month when we can't pay our rent.

Could you not present this problem to your mother? I believe you said that she has plenty of savings. Why not ask her to spend her savings on her assisted living?