Thursday, January 03, 2008

Part III - Deciding on Hospice

When my mother went back to the ER that 3rd time, Friday, December 14th, word went around, "Mrs. Jackson is back." She must have been an unusual patient for them to remember her. It had only been three weeks, but this is a huge regional hospital with an ER of over 50 treatment spaces, all usually full. Unusual and charming. Even in the worst of circumstances she tried to be her charming self, "I'm so sorry to be bothering you lovely people." They gave her an IV and ran some blood tests. It was comforting to know that she was being seen by people familiar with her medical history. After a few hours it was deemed she could be admitted because she had another (or the same) urinary tract infection. It was 3 am before she finally got settled in a hospital room. This time the 7th floor, a surgical unit. Previous admissions were to the Short Stay Unit. I don't know if it was full this time or if they knew what was coming.

The day we left the skilled nursing facility, as I wheeled my mother back down to her room to get ready to go to the hospital she said, "I'm so lonely." She had just spent an afternoon with me, my daughter and her husband. There are other ways to be lonely I learned. Knowing that, I did not want my mother to spend a night alone in the hospital. She was lonely, helpless and prone to sundowners while in the hospital. Common for the elderly in the unfamilar surroundings of a hospital, one theory concerning sundowners syndrome is that the constant daily mental processes for normal living can become overwhelming for the elderly during evening hours. They simply have too much incoming information and their restricted cognitive abilities become overloaded. The result is a period of irritability and negative thoughts. The mother had become the child, the child, her mother. I now needed to comfort and protect her.

On my first night there, she awoke several times, crying out, "Water!" Who would have heard that cry, that feeble request for the simplest of needs? She was unable to find or even use a call button. Confused and afraid of the dark, I slept with the light on for her. Worse, was watching them try to get her to swallow her pills. Because of her back pain, she was only comfortable lying nearly prone, which made swallowing impossible. Mashed in applesauce, pudding or yogurt just wasn't working for her anymore. She couldn't do it, yet they tried. Like force feeding an infant. It appeared that she was being unreasonable, uncooperative. But she just couldn't. She had pretty much stopped eating everything that last week, unable to tolerate the taste, smell or texture of food. That's an early warning sign, but one we didn't recognize, because in the past, her antibiotics and other medications made her nauseous and killed her appetite - that and institutional food. Pain can do that too. She had been in a not-eating phase before but if you saw her on Thanksgiving, you know she could still enjoy a good meal. She was literally down to skin and bones and starving herself to death. At what point did Mom's behavior and symptoms switch over to impending signs of death? Did we not recognize it because we didn't want to see it, were untrained and unknowledgeable of the process, or had the process been happening for months and we had just come to accept is as the way Mom is, sure she would "come around" again?

My sister and I alternated nights at the hospital, so she was there Monday morning when the doctor asked what we wanted to do for my mother. Many, many, many times, as I watched her die (the word deathwatch kept stomping through my head), I asked myself - did we make the right decision? What if she was hanging on so long because she really didn't want to die now and she was struggling to overcome the pain-relieving medication and starvation we had imposed on her? What if she could rally again and get back to where she was just 3 weeks ago on Thanksgiving? Were we being cruel and inhuman or compassionate and loving? Two days ago I asked my sister exactly what led us to make the DNR decision, to switch from actively trying to heal her to passively sitting by and letting her die?

In her own words, here is how we came to make the hardest decision of our lives. "It is somewhat of a blur but Dr. Weir or Heintz – I can’t remember - said mom probably wouldn’t survive a surgery to fix any additional fractures. She said mom had kidney failure, was dehydrated, urinary tract infection, myelodysplasia syndrome of some sort and pancytopenia, which she said meant she was low on all blood cells and platelets. She mentioned the cirrhosis of liver too. She asked us about the DNR and said that she would still be suffering if they did resuscitate. She said we needed to reinstitute a quality of life for her now … the pain meds … and hospice care. She asked me what I thought was going on and I said I think she might be dying based on some things she has said but doesn’t want to or isn’t ready. Something like that. She agreed and asked me why she might not want to die – if there was anything unresolved. I said I thought she was afraid of death and that she never wanted to talk about it. I also said she has always had an inferiority complex and thought she wasn’t loved but oh was she loved. Daddy was there and added that her relationship with her mother was poor.

I don’t know why I said all of that I just did. She said we were talking a quality of life issue. They could “treat” her but it wouldn’t cure anything. When her heart went into arrhythmia that day they asked us if we wanted to “treat” it but suggested it would prolong the inevitable. Daddy and I … and I guess you agreed to not treat. I asked Daddy today if he remembers any of that conversation. I was afraid perhaps I killed her prematurely and he said no that she was in pain and that they said they couldn’t do a whole lot to help her get better so we made all the right decisions. Its been bothering me … and when you said what did they say to make us stop letting her live I thought again … did I/we make the right decisions? We agreed we didn’t want her in pain … and she didn’t want to swallow any pain or other meds. She said she just wanted them all to leave her alone. I think she was ready. She had said to me something like “I don’t have anymore to give.” She was tired. I miss her."


Angelika Westermann said...

Dear Lesley,
don't torment yourself. I am absolutely sure you made the right decision.
I watched my mother die from cancer for 3 years, and she finally decided for herself to end her life. As horrible as this was - I cannot imagine her loneliness at that moment - we were all glad that there was an end to her pains.
I do hope that when the time for me comes to make this decision, my children will do the same you did for your mother.
Hugs, Angelika

Terry said...

It's all so hard and nothing is a clearcut as TV. Despite my mother's DNR, we agreed to put her on a ventilator with some hope she could recover. In her last act of will, she pulled out the breathing tube herself. I feel guilty for forcing that on her. There is no right or wrong, only the best we can do in horrible circumstances. Be at peace with your decisions.

Kim said...

Dear Lesley
Your Mother's story is very touching. I can not imagine being faced with some of the decisions you made. I have always believed that God doesn't give us more than we can handle, and it is amazing what we can and do handle. So, remember the memories, savor the stories and your family. You did alright.

Prayers for you and your family,

Anonymous said...

Lesley and family, Please know that you did not stop "letting" her live. You stopped MAKING her live. I am a nurse and I ask families the same questions you were asked almost daily. I am always grateful for the families who love with the unselfishness that you did. They are rare. But, as I said in another post, you gave and were given a gift of grace and dignity that further treatment of disease processes - not of your mother - would have robbed you of. She would not have rallied to the place she was before. She may have fought a bit longer, but she was tired and you were brave. Thank you for that. Thank you for sitting with her, talking and singing to her and touching her as she readied you and herself to go. You were given a precious gift of grace. Treasure it always. My recent loss did not give me those moments and I ache to say and hear "I love you" one more time. I'm glad you did.
Kathy in Michigan

Denise S. said...

Lesley you must know that you all did your very best for your dear Mother.

Please feel some comfort that you did get to spend some more time with her and she still could communicate with you. Both my Mom and Dad have passed away just in the last 1 1/2 years and I so regret not getting to actually talk to them again. They were both not able to talk by the time I could get to them.

I also unfortunately have first hand knowledge of MDS. My middle son was diagnosed with it 4 years ago and underwent a stem cell transplant from his brother.
It has been touch and go for him too many times in these 4 years and I want you to know your dear Mom would have had a very hard go of it had she survived the other illnesses that she had.

Love and hugs to you dear lady.

Anonymous said...

My mother announced on a Thursday, when I arrived at her assisted living facility for our daily visit, that she was not taking any more medication. She wasn't going to eat. She was tired, she said. She was also an alcoholic and at that point voluntarily stopped drinking. Mom was focused, sure of her decision and made the choice to die while mentally able to make the decision. She signed a DNR. I called her doctor and it was agreed that my mother was rational and able to make that choice for herself. She died on Monday morning, in my arms.

And you know, Lesley, I still had hours where I felt like I'd made the wrong decision. I know how you and your family feel, truly. You did the loving thing. You stayed with her, loved her and allowed her to escape the pain. I know how hard it was to let her go. God bless you all.

Lenna Andrews said...

Thank you for sharing your very personal story about your mother's death, Leslie. Remember to trust your heart.

You said this blog has become your journal & you write it for yourself, but it is true that others like me do read it. i believe your experiences and what you share about them means a lot to us and teach us a lot. Again, I thank you. lenna

I need orange said...

I think one of the hardest things about this stage of life is the up-and-down-ness.

As caregivers, we become used to them having bad days, and coming back to have good time.

That makes it much harder to know when the bad time is not going away. Much harder to know when it is time to switch from "doing everything" to "making comfortable." Or trying to make comfortable.


Ahava Hopps Brooke said...

I believe that you did the right thing. Choosing Hospice is not giving up on a loved one. It's choosing a different path to care that emphasizes comfort. I'm an oncology RN and we help with a lot of Hospice patients also. I've seen patients die on Hospice and some die "hard". When there is no hope for quality of life, I think that Hospice is a humane option for those who want it. Thank you for sharing your story. For what it's worth, I think you choose to not prolong suffering. I think you did a kind brave thing.

Linda said...

Lesley, thank you for sharing your story. I've been through it and I know what you mean about questioning your decisions. You did the right thing at the right time. I know it's so hard. The body doesn't die seems so unfair. Be comforted.