Saturday, March 29, 2008

I want to talk about it!

It was Christmas! I was talking to my mother-in-law telling her that I did not know why the Lord let my mom linger. Diagnosed with Huntington's Disease in 1995 it was almost 11 years later. Mom could not eat, talk, dress herself, go to the bathroom, walk, change herself. It was all done for her. What kind of existence was this? Why did she linger? Over the last couple of years she had pulled her feeding tube out twice but it had been a few years. We talked to her about it. Did she understand? The hospital kept putting the tube back in without calling us. Why call us? We had requested the tube in the first place. But that was back when she could eat herself. When she could talk. Mom would not talk about what she wanted when it came to end of life decisions. I will be okay. I won't die. Or at times, "I don't have HD." Denial Denial Denial. I hate denial. But to the dying perhaps denial is a form of living. It is not acceptance. Mom would never make end of life choices affecting her care or her wishes. WE WOULD!

So a hospice worker tells my sister that you cannot get the tube taken out without a court order but if she pulls it out again you can elect to not have it put back in.

Mom I don't want you to die. I don't want you to suffer either. If you think this is too much for you, you can pull this tube again and we won't put it back. I told her that once when it was just her and I. She seemed to respond as though it got her agitated. I felt bad. She could not tell me what she thought. I did not want her to go but I did not want her to suffer. I wanted her to make her own choice. Dam it, I didn't want to make it for her.

The day after Christmas mom pulled it out. My sister called. It happened. What will we do? We decided not to put it back in. The nursing home didn't get it. Why would we do that? Why wouldn't we? They got money for taking care of someone who basically laid in bed day after day. It was easy care for them. My sister who went and visited frequently with no response saw that her quality of life was next to nil. Would I want to live like that?

So we did not have them put it back in. Now we knew mom would die. I got on a plane. I knew I was going to see my mom die. We weren't close. I tried and tried but it wasn't to be. I don't know if it was the disease before we knew what it was or just who my mom was but I could not get close to her. She lived in her own reality and I could not find my way in. She used to tell me lies. Your family sees you as the black sheep because you won't drive 1500 miles with a newborn in your lap to visit family. Never mind that it isn't safe or that money might be an issue.

It was all lies. She was making it all up but at the time I believed it. I thought she might be manic and was calling medical facilities asking questions as to the diagnosis of her behavior. We all were. So then she is diagnosed. It is Huntington's Disease. There is no cure. She will die and you her children each have a 50/50% chance of inheriting the same thing. Talk about a shock.

Once she became ill and we knew why and what was causing this it was like there was an excuse for her behavior. It was awful but somehow explained away her mean remarks. I wanted to blame the disease. I did not want to think that she was capable of being this kind of person on her own.

I was able to love her through her illness. I could be there like I couldn't before. In sickness she would let me. I changed my own mothers diaper and I thought why not. she changed mine when I was a baby.

Mom had visitors when she was sick. She told us that one of my sister's came to visit and was right down the hall. Only she wasn't. She also said she was an accomplished pianist, only she wasn't. She never played the piano.

I used to worry that I would not be able to even hold her hand but in the end I was lying next to her on her bed making her laugh. She would hold my hand and not want to let go. I could not understand her words but I tried. I felt guilty when I would have to leave for the day. Or when I would fly home.

Then came that call. This was it. I was flying to say goodbye to my mom.

When I walked into her room and saw her lying there in hospice I was stunned. She had aged. She had sores on her tongue. How did they get there? I walked up to her bed and leaned in close. Mom it's me I am here. She responded. She tried to talk.
I love you mom. I dabbed her mouth with a wet q-tip. She was looking at me. I told her that I would stay with her all the next day and not leave her. She seemed to be trying to say something. "Leaf...leaf......was she telling me to go? To leave? It haunted me. Mom are you asking me to leave? Why would you do that? She fell asleep with her eyes open. I had taken hospice training but I still needed to be reminded that she was not in pain. She is asleep they said even though her eyes are open. You can go. We can never be certain but she will probably not die for a few more days.

I went to the chapel at the hospice. I cried and cried and cried. There was no tissue in the chapel. I could not believe it. Gathering myself I went back to a nurse who assured me my mom would be okay for us to leave for the night. She would be there and call us if there were any changes.

The next morning the phone rang at 5:30 am. I knew. I just knew. My sister came in and said mom took a turn for the worse. They want us to come now. My sister and brother and I threw on clothes and raced over. Walking to the front door we were met by that same nurse from the night before. She was walking towards us crying. I am so sorry she said. She is gone. We were with her and holding her hand and telling her you were all there and that you loved her.

She told us that sometimes patients don't want to die with family around. They want to spare them. Your mom died peacefully. We walked into her room. My sister later said that it felt anything but peaceful. My mom was lying in bed with a teddy bear the nurse placed in her arms. I walked to her bed and placed my arms on her chest. My sister said, "she's gone". I had to feel for heartbeat. She was gone. We sat there for about an hour. There was this Elvis poster hanging on her wall my sister had brought in. Did any of us want it? No! I took the bear she was holding and I have it today. I am sobbing as I type this.

I felt so much guilt for a year. I thanked God for taking her but I blamed myself. Would she still be alive if we had put the tube back in? What kind of life would she have? It was a kindness but it feels so bad. I tried drinking away the pain. It did not work. I tried to ignore it. It did not work. No matter how many times I told myself that she was not suffering anymore I still felt to blame.

In January of 2007 I realized that it wasn't my fault. It was as though the Lord said I could have kept her alive if I wanted to but I didn't. I ended her suffering not you. She is with me now and she isn't in pain. And she understands your love for her. Only then did I feel released.

It is 2008 and I am much better but thinking back on those days is painful. I still hurt when I think of her sores and her suffering. I could never make our relationship be what I thought it should when she was alive, certainly not in death.

But she isn't here. Sometimes I miss her. I miss the times when I accepted it wasn't her being mean but the disease because then everything was understandable.

I just needed to talk about it. I needed to cry.

I just missed her.


Diane J Standiford said...

Your moving story s similar to what happened to my in-laws (my mate's mom and dad) both lived in denial, but mostly the mom. Both had DNR, but not on right file at right place or time. They were in mid 80s, dad had stroke,but tube put in, then removed when DNR produced. HE made the decision,BUT it wasn't done and daughters had to say,"remove it," he was lucid. The mom fell, broke pelvis, we found her in nursing home naked on cot, caked lips, gave water as you did...such pain,had the morphine increased---gone. Did either REAlLy need to die? The things that haunt we life...death.

Bailey said...

Hello -
I just read your article your experience with your mother's illness and death. I had a similar experience with both of my parents, and took years to get over the effect of chronic illness and ultimately, death, on the family.

I wanted to let you know I am a documentary maker and hospice volunteer in Atlanta, Georgia.
I've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.

It's called 203 Days.
You can view it in its entirety at the following University of Connecticut website along with a study guide.

It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.

203 Days recently won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).

If you'd like more information please go to my website

I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.

Bailey Barash

Anonymous said...

Thanks Java for writting what you really helped me to feel better about how i have been feeling. My mum is very sick with HD and i feel bad sometimes for wanting it to end. I dont want her to die, i just dont want her to suffer anymore...and thats a very confusing feeling. But i feel more accepting of its reality thankyou.