Prolonging dying, not prolonging living

[Pea-n-Me]

I've been thinking about how best to post a subject like this here. Here goes, in the hopes it might help someone else.

These 5 words were the words that helped us make a very difficult decision recently, and sadly, I had to find them on my own.

I hope they help someone else like they did us.

From another thread, here's what happened, in a nutshell:

My cousin and I were in this type of situation just two weeks ago. My aunt (who was like a second mother to me; I helped her son, an only child, with her care as she battled Alzheimer's for the past decade) had a disease of her brain but the rest of her body was strong. She'd begun aspirating and they told us it was "the end", that we should just let her go. Huh? This meant stopping all meds, fluids, food, basically withdrawing all care except for comfort measures and pain medication. We went back and forth all weekend about whether to bring her to the hospital for treatment and possible feeding tube placement. I supported my cousin as best I could with information and either decision, but it was really his alone to make. To outsiders, the answer seemed clear. But to those of us who loved her and knew her as she was in her prime, it wasn't an easy decision. We ultimately decided to "let her go", but sitting by her bed for 6 nights watching her die was difficult. Even to the end, my cousin was second-guessing his decision. We know in our hearts it was the right one, but it still wasn't easy.

It was unfortunate that this came up on a weekend when support staff at the nursing home weren't around to help us. I found an article about end stage Alzheimer's that explained this concept and that is ultimately what helped us keep it in perspective and go forward with the recommendations of my aunt's medical team. I hope it helps someone else faced with an awful situation like this.

 

[CarolAnnC]

I know a Living Will definitely helps in these cases. It allows individuals to make that decision for themselves while they are still healthy and in a coherent state of mind. Takes the burden then off family members who have to make the heart wrenching decision.

My condolensces and prayers to you and your family on your loss of your beloved Aunt.

 

[julm26]

I am an only child and had to make those same decisions for my mother over 6 months ago. She had pancreatic cancer and did well for 3.5 years - In November 2007 she got dehydrated and went into the hospital and then to a nursing home to regain her strength. She was never able to and died on Feb. 18, 2008 in the nursing home. She was only 69.

The most difficult thing I had to do was sign the DNR (do not resusitate) paper for hospice. Mom was down to about 60lbs and not able to walk by the end. Pancreatic Cancer makes you not want to eat - so in the last weeks of her life she only received "pleasure foods" and drank gatorade (what she liked) and was on morphine,

I never missed a day by her bedside and never went a day in my ENTIRE LIFE WITHOUT TALKING TO HER . But in the end my mom wasn't living any kind of life - I prayed for God to take her, and I will miss her for the rest of my life.

It is quite difficult when you are an only child to have to make those terrible difficult decisions...I'm so glad you were able to be supportive of your cousin and his decisions. I made sure to include my aunt (mom's sister) and my 3 cousins in my decisions but ultimately they were mine to make.

My life is forever changed by the things I had to do but I am stronger for them...

What does not kill you makes you stronger.....

 

[Mackey Mouse]

I am so sorry about your Aunt, but I do hear you on your decision. It must have been a hard one for your cousin, it was good that he had your love and support..

Julm, my heart goes out to you.. I hope I am strong enough, lately Tom has not been feeling great and it is scaring me, but we have a dr appt Wednesday.....thinking that he will be starting treatment soon after.

 

[Emma's Mom 03]

About a year ago we had to make the same choice for my father. He too was in end stage Alzheimers. It becomes such a sad life at the end. He had been transferred around between nursing homes and hospitals (nursing homes like to kick out Alzheimer's patients when they get to be a handful). It was just no way to live. He ended up with pneumonia and instead of treating it we just had them give him pain meds. It was over fast - luckily for mom.

 

[kimis]

I DO know exactly what your cousin faced. Two and a half years ago my 69 year mom was diagnosed with small cell lung cancer. It is one of the most aggressive cancers out there. They told us that in a healthy person you would be lucky (lucky with cancer?) to have six months. My mom had three and a half months.

From the beginning she told my sisters and myself exactly what she wanted. She had already had a living will. I am the oldest so at the difficult times I am the one who had to hold firm. I can NOT tell you how HARD it was. It was honestly the hardest thing i have ever done in my life. My mom, my sisters and myself were the best of friends. I had a saying with my mom "your the boss applesauce". She was too. She planned everything including her memorial service. Excuse me she didn't call it a memorial service she called it a celebration of life.

She immediately put a "no tears" rule into effect. This was so unfair. This
was broken on many occasions.

We were fortunate in the fact we had a great Hospice. My mom had originally planned to stay with me until the end and then go to a hospice center. She said she thought it would be rude to move into my house and than die. We told her we would forgive her. But in the end she changed her mind. She decided she wanted to pass in my home. Hospice had told us she would probably want change her mind. I had no problem with this if that is what she wanted.

I would have to stand up to her sisters on a few occasions. In her final days she had laid herself in a position that looked so uncomfortable but hospice explained she was comfortable and DON'T move her because it would cause pain. My mom had one sister that refused to listen so on two different occasions I had to quietly but very firmly tell her not to move mom. I was raised never to talk back to an adult. I am 51 and that is the first time I ever did talk back to an adult. There were other occasions also.

I had to keep telling myself that I was doing what mom wanted. She would have been proud but I wasn't feeling like I was doing anything to be proud of. We had the wonderful nurses of hospice and moms doctor telling us we were doing everything right. However I never felt like we were. If death can be beautiful than hers was. I would not have changed a thing my sisters and I did.

I would have gladly helped my mom a million more days but that wasn't possible. In the meantime I know she is a BETTER place in a perfect body with no pain. I will see her again.

My prayers are with you all.

 

[karinbelle]

My dear grandmother is at the end today. She's been in a nursing home for 10 years with Altzheimer's. It's breaking my heart to see her at 96 pounds.

We expect her to go this week - probably sooner than later.

She smiled at my DD (17 months) and said my name today. Her breathing is so shallow. We all love her so much. She's the person who had the greatest influence on my life - who I am and what I stand for. She's the most honest, considerate, and loving person I have ever met.

I know she'll be in a better place this time next week.

 

[Pea-n-Me]

Thank you all.

 

[Pea-n-Me]

In her final days she had laid herself in a position that looked so uncomfortable but hospice explained she was comfortable and DON'T move her because it would cause pain. My mom had one sister that refused to listen so on two different occasions I had to quietly but very firmly tell her not to move mom.

This is an interesting concept, and one I've never heard before, even in nursing school (over two decades ago, hopefully that's changed). I did learn it on my own, however, when I was a new graduate nurse on a very busy medical unit. I had a patient who was on comfort measures and expected to pass. He looked ungodly uncomfortable, and I was concerned about it, so I insisted on turning and repositioning him (which is what's drilled into your head.) He became angry with me and told me to leave him alone. Before the end of my shift, he passed, and actually, I'm still amazed it happened so soon. At any rate, it always bothered me that I'd made him angry and uncomfortable in his last hours. Over the years (working in a hospital) I've tried to balance this "comfort vs good nursing care" thing in my own practice. I assume the hospice nurses must have turned and repositioned, cleaned your mother at least once or twice a shift, right? Do you mean that, other than that, they left her alone? That is generally what I do as well. It's kind of hard for nurses who don't deal with this every day to get in a mindset that it's ok, especially in a hospital (where there are mandates about skin condition and such). Thanks for mentioning it, I'm going to explore it further.

 

[kimis]

Actually it was in the last 48 hours of her life. Mom was at a "semi coma" stage I guess is what you might call it. She wasn't eating, drinking or talking .
She had tumors growing under her skin. We would (when she wanted it)
rub lotion on her back and feel new tumors every day.
About the only time she would respond was when someone would touch her.
I should say she didn't mind having her hand held or her forearms gently
rubbed but she didn't want moved. Again hospice explained that was because even though we thought she was uncomfortable she was the most comfortable she was going to be. She was basically gone except her heart wouldn't quit beating. It was beating so hard it was shaking her bed. We were giving her adavan (sp?) and morphine every hour to try to slow the heart rate down. The hospice nurses and her doctor (who actually came to my house several times to see mom in the last week) couldn't understand it. We had all told her it was okay for her to go but she was holding on for something.
When my aunt would try to move mom you could see the pain it caused on her face and it broke my heart. That was the only time mom said anything
about the pain. I think that is what gave me strength to deal with my aunt.
I do remember when my brother passed of non-hodgens lymphoma his body hurt so bad that even sitting on the bed would hurt him.
However you CAN NOT let what happened to your patient bother you. You are a nurse and you were doing your best. I admire you for your work. You sound like a great nurse!