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new here - looking for help deciding what to do next

tiredoftreading
Posts: 1
Joined: Jun 2011

I have been caring for my mother for the past 6+ months. She was being treated for bleeding ulcers and side effects such as low blood pressure, low hemoglobin levels, etc since August. Three weeks ago we received the news that she has stage IV stomach cancer with several lesions on her liver. The oncologist suggested chemotherapy treatments to help stop the bleeding issues going on in her stomach - but the cancer over all would not be able to be cured.

A big issue we are faced with is my mothers mental status. In the past few months she is all over the board mentally. She was being treated for early stages of dementia but the oncologist feels that the cancer could be making things much worse for her. Its almost like she has multiple personalities. She has been in and out of the hospital severl times in the past few months and hospital stays are REALLY bad for her, she tries to leave, is delusional and has to be medicated.

So far she has had one day of IV chemotherapy treatment and is taking an Xeloda orally. this was just the first step in a 3 step treatment. She has already landed in the hospital due to stomach pain, weakness, vomitting, dehydration.

As I mentioned I have been caring for her, I also have 3 small children including an infant. I just can not continue to provide care for her. Its not fair to her because she doesn't get any peace in a house full of children and I also can't subject my young children to watching their grandmother waste away.

Besides rambling on with my story I do have some questions (if you've made it this far). She is currently in the hospital and I have decided I can not take her back her once released. If she was physically unable to walk she would be approved to go to a rehab facility covered by her Medicare - however what if she is too ill or mentally unstable to be at home? Where do people go that are going through chemotherapy treatments if they do not have someone able to care for them? Assisted living, nursing home? I just don't know whats best for her and would welcome anyones advice that has been through a similar situation.

Karen82
Posts: 35
Joined: Jun 2011

I am a CNA (Certified Nursing Assistant). I also take care of my mom and have 3 children as well.

If you can't take care of her and she can't live independently, nursing homes will make sure she is taken care of. Just make sure that the choice of the nursing home is something she will like to a certain extent. Sometimes people get confused in the nursing home when they first are admitted. There is anxiety at first until they get use to the idea. Where I live, they can transport them to the doctor's offices for appointments and I imagine they can with chemo. The one thing that you do have to watch out for is the illness that go around in nursing homes such as the flu. If she is on chemo in a nursing home, this could be bad news for her.

Assisted living is not a bad idea if she is somewhat independent but needs some help. I do not know if they transfer them back and forth to doctor appointments.

If she has her own place and can live some on her own, there are home health care agencies. There is no 24 hours a day care that insurances will cover. These people can come in and cook, clean, run errands, take her to appointments, and etc. A nurse will come in there and check on her every now and then. There is also other different services such as a nursing coming in and monitor her medicines and other things like that. Physical therapy and some other needs can also come in and work with her.

There are many options that are covered through medicare. You and the doctor can decide what is the best option for you and your family.

The most important thing regardless of dementia or not is that Make Sure She Knows She is NOT FORGOTTEN. As painful as it may be for you and your family, go see her once in a while at least and let her know that she is still loved. I know this one person which she is dead now because she gave up because her family promised her something and did not come and see her alot. Make sure this does not happen to your mother.

These are just some suggestions that you can try or talk to the doctor about to figure out which is right. Hang in there.

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

I would like to suggest that you make an appointment with the Social Services Department of the hospital where your mother is staying right now. They are very experienced at evaluating her needs and making arrangements for the best place for her. They can help you make desicions based on the options available to you. Don't try to figure all this out on your own. This is their job at the hospital. You could speak with her physician about getting Social Services involved. You need to let them know that you are becoming overwhelmed by the responsibility. They will have to find her a placement before they can discharge her.

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