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Today101 Asked March 2014

How am I going to survive as sole caregiver and live-in for my Mom who has terminal lung cancer?

Ten months ago I did not renew my lease with good intention to live with my mother who was having some serious tests leading to possible lung cancer. After two months, she was diagnosed with two different lung cancers and began to start treatment. Surgery is not an option. Last summer I was working in a shop for some income and to get me out of the house. I knew that I needed some time to myself. But, my mother does not like it when I am gone from the house. If I am gone, she wants to know where I am all the time. To help with this process, I went with her to most of her treatments, battled with challenges with certain nurses and doctors to make sure she was getting the best care, started going to palliative support groups for people with serious illness, and I started going to a caregiver support group. My mother is very frail right now, but does not want to lose her independence and has chosen to avoid acknowledging that she is probably going to die from this crippling disease. She can walk around with a walker. She is not interested assistance from a healthcare person to come in and invade her space in her home. She is happy as a clam to have me struggle through her hoards of unopened documents apparently hidden away in cabinets, etc. I am discovering that my mother is deep in debt which is very stressful because I was having some financial difficulties in the previous state I lived in and was hoping to be able to both help my mother and get a better footing in the workplace. The more I worked, and very occasionally would go out with a friend after work would drive her into fits of rage when I would get home. My mother is in denial about many things and is also Obsessive Compulsive. She gleefully has 15 pets. I love the animals, but it is overwhelming. The house is packed and colorful. For the past week and I have been putting in deep hours delving through baskets and drawers of unopened port ant documents, bills, etc. She does not say a word when I do this and in fact often goes up to her bedroom so that she does not have to see it. No thank you or offer to help. This has been a recurring theme in our relationship since I was younger. I am the organizer, and she is happy to receive leaving me in the dump with sorting out a h*** of a heap. I have no other family, except an estranged brother who has a volatile relationship with my mother and will surely resurface at some point soon. The support giver of my caregiver group tells me that I should try to stay focused on my intent. It is hard. My mother does whatever she wants. I know that she is terrified of dying, but she does not share that and is sucking me dry often. Last night, I stayed up late looking for certain documents to help her apply for discounted medications. I must have thrown out at least 2 40-gallon bags of papers that were repeats or junk and found a heap of important documents to be sorted. After work today, I went home and looked for a few video tapes that I had stuffed in a dish on the coffee table in the living room. I saw them there yesterday. Immediately I blamed my mother for having put them somewhere. It would not be an unusual thing for her to do that. I flew off the handle in an unhealthy way leaving me crying and she said she couldn't be around me and went up to her bedroom. I need more of a life. Occasionally, I take her on drives or we go out to lunch. That is our occasional bonding time. But, there is no discussion of what is happening. Her physician says that Mom foes not have much more time and just let her lead her life the way she wants. I take care of so many things. I love Mom, but I am feeling unappreciated, angry, feeling hate, helpless, sad and scared. How am I going to get through this without regret? Mom is a narcissist. It is hard to connect emotionally. She'd rather talk about the news. When things are lighthearted, she'll chat. Many things are hanging that have been left unsaid. I feel dumped on. I have taken up painting and certain arts, go to the gym, occasionally go on drives alone to get out of the house. I used to be a fun, gregarious individual with lots of potential prospects. Now I feel hollow.

Today101 Mar 2014
Pstegman, Thanks for the positive thinking and advice about credit check. It is important to focus on some good, quality together (which we are). But, the heavy challenges of the piles of paperwork and blah, blah, blah (details can be monotonous) can make my best intentions difficult to focus on. Yesterday after work, the day after my meltdown about the stupid video tapes, Mom came right up to me to give me a hug. No mention of meltdown. The paper situation still lingers but is better.

JessieBelle,
I laughed so hard when you mentioned that the number of animals would be okay if 13 of them were fish! Needed a laugh.
My mother is on Medicare and has Blue Criss Rx for her meds. Even with this insurance, certain meds, especially associated with cancer, are still incredibly expensive. She has recently been put on a new and very expensive drug to hopefully help her for a dangerous condition that has developed due to her treatment, which is now no longer being given. Her cancer cannot be treated until this new drug does its work, which can take months and has no guarantees. I connected with our local Social Services Guidance Counselor at our hospital to help with finding different groups that might be able to provide additional assistance. I sent an application to the drug company that produces the name brand of my mother's new med, even though she takes the generic (which is also incredibly expensive). She was rejected and now I have to sort out her expenses which I partially hidden in that heaps of paper. If that route does not work, which takes time to process, then I go onto the next company on our Social Service Guidance Counselor's list or wait until Mom makes it through this expensive donut hole (she is more than half way through it).

Anyway, thanks again for the laugh.

JessieBelle Mar 2014
Hello, fellow organizer. There is rarely a day here that I don't think "what a mess." After four years I've given up trying to sort through. I have this dream of taking a bulldozer and just leveling the house one day, so no one has to deal with it. I must have shredded enough records to make a mountain. My parents kept all their records, all the way back into the 1980s. I mean, every record. They no longer had a dining room because of the boxes of records piled up. I bought a super power shredder to deal with it all faster after my father died, and even then I faced protests and tears from my mother. I'm glad I shredded, though, since she hasn't mixed the boxes a single day.

Does Medicare not cover her prescription drug charges? We have to pay very little for my mother's medication. She is on Blue Advantage. I wonder if your mother could get a Medicare supplement, since I know her medication costs are high. If these things would cover the cost, it would save you from having to locate her financial records.

15 pets! What kind are they? I love animals, but I think 15 are too many for one person. It gets to the point that it is animal collecting and not healthy for human or non-human animals. I guess it would be okay if 13 were fish. I have a feeling that some might be better off if they could be rehomed. I know that is a huge step for an animal person. I just feel for you and the animals. I get the feeling your mother has some hoarding issues -- never fun. Been there and still living it. I do the best I can, but it is not easy when someone just throws something down wherever. I try not to let it upset me, but my anger still seeps through. I've learned there is no way to change it, so I just deal with it one sweater on the chair at a time.

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pamstegma Mar 2014
Forget the many things hanging and live in the moment. My FIL had Hospice volunteers who never talked about death or things hanging. They reminisced about the good old days, they just enjoyed each other's company. Keep going to your support group. Get a mild antidepressant Rx from your MD. Do a free credit check on Mom to get a bigger picture, but don't aggravate her with the details. Find her Will or make one. You are appreciated, but she disconnects from your heavier emotions to protect herself. Talk about the news.

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