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What do you do when there is no other support?

JMulkey
Posts: 32
Joined: Apr 2010

What do you do? My Mom has ovarian/uterine cancer. She's been battling this for a year and two months. I am her primary caregiver. She lives with my brother, who takes care of her at night, when he's home from work. I take care of her all day. She can't be left alone at this point, she's 79, and cannot get around well. She's had several falls, another just last week. She's actively seeking treatment, so hospice says they cannot help us. Three months ago, my husband got very ill. Five weeks ago we almost lost him. He had to have a colostomy due to a perforated colon. So, now I also have alot more responsibility at home. There is no other support system. No other family who can help. One cousin who can come over once in a while. That's it. So what do you do in that situation? We have no money to hire anyone, we can barely afford prescriptions at this point. I am worn out. But I love both my Mom and my husband. I would never, ever want to not be there for either of them. I have no idea what to do. I am very, very tired. And moreso with every day. I have no idea where to get any help. We also live in a small town, so nothing here like support groups.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Hello and welcome. My mother is 81 with end stage ovarian cancer, diagnosed in Feb. 09, so I know what you've been through. After a bad PET scan in August, Mom opted to have no further chemo, but to try various hormone drugs that were permitted under hospice. The doctor had a sheet of paper that broke down the options, and Mom chose a treatment plan that might buy her some time. She was most interested in preserving quality of life, and says she has no regrets even now that we really do have hospice and the end may come soon.

Hospice is a blessing financially because they cover so much. Oxygen was delivered the same day, and there is a nurse's emergency kit in the bathroom in case we get into a situation that requires something we don't have. They don't cover sitters, though I did hear that widows of veterans have some special benefit in that regard.

I don't know how you and your brother and husband have pulled this off, but all I can say is Wow. If your mother is falling that much, she is probably ready to have a realistic talk about her situation. Looking at a treatment plan that includes hospice could be your best option.

Noellesmom
Posts: 1270
Joined: Aug 2010

While it may not be a long term solution, you might want to look at a nursing home. Per Medicare rules here in Alabama, my mom was hospitalized and able to go into a rehab facility/nursing home for three months with no cost to us. It turns out that she only lived three weeks but that was an inevitability, not because she was in a nursing home. She still spent almost no time without one of us there. It just gave my sisters and me some of the physical support we needed as in bathing and lifting and some minimal physical therapy (supervised brushing of her own hair, giving herself a sponge bath).

Had she not been hospitalized prior to her admission to the rehab facility, she still could have been admitted but it would have been approved for a shorter amount of time. Ask her doctor.

Our church also has a staff of volunteers who will go sit with the sick and/or elderly at no charge and this is offered community-wide, not just to church families. Call local churches and explain your situation.

You are looking for respite care: ask your mom's doctors and nurses for information regarding this.

You've got to get something lined up or you are going to end up in the hospital yourself. And, if you do, what will your mom do then?

Come back and let us know how things are going.

JMulkey
Posts: 32
Joined: Apr 2010

Well, got some help today even though we didn't want it. Onc said no more chemo. So we go to hospice. the reason I say we didnt' want it, was, we needed help, but not this way. The 'resthomes' here in our little town are worse than being at home by yourself. They smell the minute you walk in and the aids are lazy. Not a good situation there.

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