My experiences with Death and Dying

[Atsugi]

When we got the diagnosis, my biggest fear was that she might suffer during dying. Now that I’ve experienced helping my wife through that time, I think I can help people who want to understand the process. I’ve lost my mom, dad, aunt, and wife in recent years. Here’s my experience; maybe it will help you.

The movies make it appear very painful and dramatic. But that’s not what I saw in real life. What I saw was calm. In general, the weeks prior to death were busy, but the actual death was peaceful.

First advice: Develop an excellent rapport with everyone you come into contact with. Make it easy for them to help you. Nobody understands ALS, but some nurses and doctors think they do. So don’t be judgmental.

Second advice: Don’t be shy about speaking to medics, even doctors at the ER. They pretend they know everything, but the fact is they’ve never seen a case of total paralysis. I always gave a quick briefing to EVERYONE in the care chain whenever we needed help. They let me through, so I never sat in a waiting room.

Third advice: Hire an elder attorney and a funeral home early on. In my wife’s case, we made a DNR order on yellow paper as required by Florida law and taped it to the refrigerator so that all the EMTs and nurses would understand not to give CPR. That was our choice.

Fourth advice: Do NOT call 911 if you want a peaceful passing. They are not trained to help a person die, and will do everything to make a body live another hour. We used 911 when we fell over and needed help getting off the floor. We used the ER when she needed her throat cleared at the movie theater. But in the end, we decided it would be best to die at home without EMTs interrupting.

In the next post, I’ll describe how my dad, and later my mother, coped with dying and how it affected us. Maybe the knowledge will help someone on this forum.

 

[Atsugi]

1) and 2) In the weeks leading up to their deaths, my mom and dad each experienced confusion and frustration—they both had dementia caused by strokes. They called 911 many times, and each time went to the ICU to be probed, prodded and kept alive another day. Pneumonia made it difficult to breathe, but the doctors were able to fix that breathing problem with a well-managed perfect amount of certain drugs. As much as I loved them, I must admit that this constant 911-ER-ICU-nursing home-home rotation was not only painful and scary for them, it was expensive for us and interrupted school and work. Not complaining; just describing the facts in the hopes that others will understand the different “ways” it can happen.

In the end, each of my parents were given morphine to help open up the lungs and reduce the fear one normally feels when you have a hard time breathing. They were old (88+) and weak and had multiple medical frailties, so one day he (and later she) simply got exhausted, went to sleep, and didn’t wake up. The hospital nurses knew exactly what to do. We got a call immediately after death, and visited to say goodbye in their beds a final time. We collected their personal belongings and contacted a funeral home and all their friends and relatives and held memorials. Then our elder lawyer helped us through the Will, the Estate sale, and selling the house. Within 6 months, everyone had their inheritance mailed to them.

In the next post, I’ll describe how my aunt took control of her situation. Later I’ll talk about my wife’s passing; she had ALS.

 

[Atsugi]

3) My aunt was quite different. Better. She was healthy, sociable, traveling the world and happy up to the day a doctor diagnosed her with Chronic Heart Failure, which is a very treatable condition. At 92, my aunt simply made the decision “it’s been a good life, time to go.” So she checked into the hospital’s hospice wing and said “don’t cure me.” She cheerfully greeted her friends and relatives that visited her during the next two weeks.

One day my aunt asked for morphine. Her lungs were full of fluid (due to CHF). However, the morphine ensured she wouldn’t feel air hunger, and she went off into “la la land” happy as can be, and didn’t wake up.

In the next post, I hope to give you an idea of how ALS ended in my wife’s case, so you can be better prepared, or at least a little more knowledgeable. I’m glad someone helped me understand, so maybe you won’t mind learning from our case.

 

[Atsugi]

4) My wife Kristine had ALS. Very rapid progression. Eight months from first symptom, she was totally unable to move any muscles. She was a doctor, and very familiar with dying. She had prepared an Advanced Directive refusing feeding tubes, a trache or a PEG. She even refused to take a simple nutrition tube in her arm. She did, however, accept a catheter so that urination wouldn’t be a bother during her last days. In the weeks prior to her death, my teen kids and I worked alongside the hospice nurse in our living room to keep Kris comfortable, massage fluid out of her feet and legs, scratch her back, feed her with a syringe, cut and crush pills into apple sauce, adjust her pillow, and operate the oxygen and “cough assist” machines when needed, nearly daily. Most of the hospice nurses had never worked a case so complicated and never worked with a paralyzed person before. So I was usually the nurse, in fact.

All Krissy’s friends and relatives had visited when she could speak, and now, her closest relatives, her sisters, were in the house visiting. Krissy looked at a letter board and blinked to spell things like “air hunger” or “no air” when something needed fixing. She insisted on being given increased doses of morphine instead of forcing more air into her. She spelled out her last request, “itch butt” and the next day her eyes were locked. That night, the nurse said, “it’ll be soon now” so we gathered around her hospital bed in the living room and held her hands. Her breathing stopped, her pulse disappeared, her pupils dilated wide open, and she was gone. Everybody cried a bit, and we said nice words. We called the donation hotline at Mayo, and called the funeral home, who came and wheeled her out very respectfully. My 13-year-old daughter took the American flag from the family flagpole, and draped it over my wife’s gurney on the way out and we saluted.

We notified friends and family and had a funeral. A retired Army officer bugled “Taps” and the Air Force sent a small Honor Guard and presented me a flag. Krissy’s brain and brainstem had been donated and she was cremated. The funeral home took care of all the paperwork and we went back to school and work as usual. The life insurance and social security paid quickly. Today, the kids and I are happy, sociable, and achieving well, and we’re glad and thankful for the wonderful time we had together.

 

[frankb]

Thanks, Atsugi. Your posts should be required reading not only for our ALS family, but for everyone.

 

[MaxEidswick]

Thank you, Mike.

 

[Santa joe]

How wonderful of you to take the time to explain everything in a way we can understand. My most sincere appreciation for your honesty and continued support. I fear that day and am not sure how my husband will pass. He is on a ventilator - does anyone know that process. He is not ready to give up and I question why. He has no quality of life and is existing.

Debbie

 

[MaxEidswick]

>He has no quality of life and is existing

Hi Debbie -- Unfortunately that says it all.

For me it is the same issue: quality versus quantity.

Thinking of you,

Max

 

[Atsugi]

How wonderful of you to take the time to explain everything in a way we can understand. My most sincere appreciation for your honesty and continued support. I fear that day and am not sure how my husband will pass. He is on a ventilator - does anyone know that process. He is not ready to give up and I question why. He has no quality of life and is existing. Debbie

DEBBIE, you have the hardest job of all. I can only say that I believe the best thing we can do for our PALS is to support their choices, even if we disagree.

This is, however, a possible conflict in what I just said: Just as funerals are said to be "for the living" to mark a passing and continue on, I also kept in my mind--the whole time during Krissy's illness--that the kids and I had to live on afterwards. In the end, although I wanted Kris to have everything she wanted, I also had to make sure the kids and I would have everything we needed after her passing. I was fortunate that the two priorities--PALS and survivors--never faced an intractable conflict.

 

[Barbie]

Debbie, are you able to have a discussion with Joe's doctor about this? May be the doc who placed the vent can answer your question, or the ALS clinic. even your rep at the ALSA may have some experience with the end for vent patients. we had at least one vented pals on this forum who made the decision to have the vent removed--but it doesn't sound like Joe wants to make this choice yet. I have a local cals friend who's husband was on a vent and he only lasted a year on it. he got pneumonia and it took him.

have you actually been able to talk to him about this? maybe he is afraid to give up (who can blame him). is he rational enough to talk with? if you approach it with a open and loving attitude maybe he will not feel you are attacking him. maybe he does feel that he has quality of life...and is not ready to leave. Deb, you are a real warrior, and you and your husband face more than most of us here day in and day out. I know you have been having trouble finding help--don't give up and keep looking. you need some so badly.

 

[Santa joe]

Thanks everyone. I've asked him on several occasions if he was ready to give up. Not pushing the issue and only when things were real bad. Since he can no longer speak we've put the blinking idea in effect. Barbie he must think that laying in the bed all day watching the same TV shows over and over is ok. Other than going to the hospital he hasn't been out of this house in a year. He doesn't want to. Not even to sit on the patio. My sons and I did not want him vented. He was so adamant about not being vented at one time. We went out to dinner when we were at the Mayo clinic and he saw a young man who was vented and in a wheelchair. He changed his mind that night and said he just wanted 2 more years. What could I say, what could I do except support him in his decision. I know he did not anticipate his life being like this. When I asked him one day if he had to do it over again would he - he said NO.

I am going to talk to his doctor. I know this has to be his decision. He was hospitalized in January for a bowel obstruction. The doctor told me surgery would me very very hard on him and what were my thoughts. I immediately said no surgery. I told him if I thought it would make a difference in his life that would be different. He looked at me with so much compassion and said "this might be his way out". I can't get those words out of my mind. The obstruction was cleared and he was sent home. Thank you all for listening and being here for me. I'm going to get through this nightmare with all the support of my new found friends on this forum.

Debbie

 

[Kim C]

thank you for this. My mother is at the end and I know we'll soon be going through this. I believe it was you who once before made a statment like "we reconstructed our lives" after your wife's passing. I think about that a lot, reconstruction my life, as right now life is very difficult. I don't think I'll be the same person when this is all over. Some good things I had in me will be gone forever due to the disease and the toll it has taken on our family. Some bad things hopefully will be gone as well and in the end I'll come out a better person.

 

[Atsugi]

Some good things I had in me will be gone forever due to the disease and the toll it has taken on our family.

The passing of our PALS takes away a source of joy, but it doesn't take away any of the good things within us.
After this experience, we'll find the good things within us have been strengthened.

 

[affected]

Mike this thread is so timely for me.

That you have reconstructed yourself and your family and can come here and give back to us this way is a testament to what is possible for all of us as CALS.

We are in the process of talking about how the end should look. After our recent hospital admission for aspiration pneumonia, the reality is right in our faces and we both know that we do not want my husband to die in a busy noisy hospital.

So all the ways of helping Kris you described are all the kinds of things we are now discussing with each and health professionals.

We just got clonazepam drops to assist with anxiety related to breathing issues and have already been using low doses of oxynorm for months.

I totally believe we can assist him to have a peaceful, calm passing when that time comes, and you have helped me to know that I am on the right path to give all assistance to him.

 

[Gerri]

Atsugi, Thank you for sharing your experiences. I know they will offer help to many. You are very wise. God Bless your family.