cfox8

Hello Glenda,

Our experience was very similar to Rae’s experience with her Dad. When my Mother took sick, she lived with my family for 17 months. I found hospice to be somewhat helpful, but they could not explain to me why some of the side effects happen. It was helpful to hear about the confusion being because of elevated ammonia levels in the blood. My Mom got confused also, but pretty much stayed in a hospital bed the last three days because she just could not move anymore. She stopped eating the last 7 days, and drinking the last 5 days. I still tried to keep her mouth moist with these great little oral sponges that have a minty taste that hospice provided. I probably could have taken care of my Mom, but it was really nice to have the aide come in every day just to freshen her up. They know better how to move the patient with the least amount of discomfort. I was always afraid to hurt my Mom.

Carol

Hello Patricia,

My Mother passed away six months ago today from cholangio. I felt a great sense of peace for quite a while after she died, but I too have been recently feeling very guilty and questioning things that I did or did not do.
She moved into our house right after she started chemo because she was afraid to fall down the stairs. My father was also a great deal older than her and still expected her to take care of him even though she was so sick. I was pregnant with child number 6, but I am a natural caregiver so I loved her living with us. She loved it too, but she would never accept the fact that the chemo was only keeping the cancer at bay, and would get more and more frustrated as time went on about “why am I not getting better?” and “why can’t I get stronger?” It does not help that her doctor who she idolized told us at the first meeting that we were going to “go for a cure” (he denied saying it later at the last meeting where they said we needed hospice). My life got so chaotic during that time, and I did not realize how much stress I was under until afterwards. It is hard to remember her as a healthy, vivacious woman like she was before cancer. I feel bad for her because she never was able to process in her mind that she was going to die. I am someone who thinks that she can fix anything, so why couldn’t I fix this? I feel guilty too about not sitting in there with her more, or why did I get so frustrated when I had just sat down to work and she wanted another bowl of oatmeal or cup of coffee that would only get rinsed down the drain because she would fall asleep before I got back in there with it?? I am sure it will take all of us some time to work through these feelings. Last Sunday in Church I was sitting and thinking about how I was not technically “there” in the room with my Mom when she died. I was helping the aide clean her up, and looked out of the window to see our priest pull up. I did not want him to see her exposed, so I went out on the deck, talked with him for maybe five minutes, and when we came back to her bedside, she was not breathing. The only person that was with her was the stupid aid who did not even know she had passed. It happened that quickly. Anyway, I was thinking about this in Church, and my husband (who was holding our 1 year old in the back) came up behind me and rubbed my shoulder and kissed me on the cheek. I did not think much about this at the time. After Church, he asked me if I was thinking about my Mom during Mass. I told him how I was thinking about her and feeling guilty because my Mother died alone. He said that when he came over and kissed my cheek something “pushed” him towards me and made him do it – it was a feeling that came over him. He is sure it was my Mom telling him that I needed comforting.
I know that I did the best I could at the time, and that I am only human. Hopefully, the guilt will lessen and we all will feel better as time passes by.
Just know that other people feel the same way, and that we all do the best we can in circumstances.
Carol

To UKMember and all,
My Mom was diagnosed in April 06 and lived until 8/29/07. She had quit smoking in 2000 after 30 years, so I always worried about her getting lung cancer.
She retired in October 2005 after working for 35 years, and got pneumonia immediately after. It took her forever to recover from it, and I remember worrying about lung cancer. This woman who would go on 5 hours of sleep a night and NEVER took naps would be laying in her recliner when I would go to visit because she was so tired (she lived right next door to me). She would tell us after that she just knew she had to retire because she could not do her job anymore (because of fatigue). Looking back she knew something was not right. In February, she began to get severe diarrhea, and tried to treat it herself. In early March, she began to itch all over, but thought it was a new powder she was trying. She also said that she felt full all of the time, and could only eat a little bit of food at a time.
In the middle of all of this I had a very vivid dream that my Mother had something wrong with her liver and she would not live for long so I needed to spend as much time with her as possible. (That freaked me out)!
Two weeks later, she was outside, and my husband noticed that she was yellow. The receptionist at the doctor’s office would not give my Mother an appointment for one whole week!!!
She was officially diagnosed in April 2006, but the Dr. said that her tumors had been there for years. She had two fist-sized tumors on her liver with some lymph node involvement. Too far gone for a resection. They told us to try to shrink the tumors with chemo, and they would revisit the resection option at a later date. She fought very hard with chemo, but I watched my vivacious Mother turn into an old woman within weeks of starting chemo. She moved in with my family (we have six children) because the chemo made her so weak she was afraid she would fall down her stairs and really get hurt.
At first, she was so grateful for everything I would do for her. I was 4 months pregnant at the time of her diagnosis and taking care of my husband and 5 other children, plus her. She would joke and call me her “Cinderella”. As time went on however, I think the reality that she was not going to be cured set in and an overall sense of sadness took over. The last six months were very hard because I had a sister who hardly ever came around for the first year, and all of a sudden wanted to help Mom clean out her house and take her shopping all over (at this point Mom was actually dangerous in the stores because she was on many pain meds and would drive the carts around and hit people and things – my ignorant sister thought it was funny and my Mother did not know any better). Long story short my Mother started to tell my sister things about me that were just not true and my sister would just soak up all of the attention she was getting – it was awful. My Mother’s brother said it best at her wake – he said he wished my Mother had enjoyed the benefits of having all of the grandchildren and her daughter around her taking care of her. Instead – she was just very sad all of the time and never really smiled – only when visitors came. I know what you say about not wanting to feel bad about talking about our loved ones, but we are the ones left living with all of the emotional baggage to deal with. I question myself all of the time now about how I took care of my Mother – even though I know that I did the best I could at the time it does not make it better now. I only hope that time will heal how I feel.
Sorry to get so long winded about the personality change – but I definately saw my Mother change over the 17 months she was sick.
I can totally understand though – I wonder how I would feel if I were in her shoes. Probably pretty frustrated too.