What does someone with Alzheimer’s actually die from?

My thoughts in the mornings aren’t very random anymore. In fact they are down-right predictable. My parents, either my mother, my father, or both, are on my mind when I first wake up, lying in my bed each morning. That’s one of the reasons I’m having trouble getting a blog up consistently. I don’t want to burden my readers with it.

But today I want to try to close a chapter for you about my dad’s life and death and Alzheimer’s.

Earlier on when the reality that Dad had Alzheimer’s started to sink in, I wondered how he would actually die. Does Alzheimer’s itself actually kill you? If so, how? Would the damage in his brain ultimately stop his heart from beating?

So I researched the end stages of Alzheimer’s online and read about all the things that could happen, and did eventually happen, to my dad. Often, it seemed to me that Alzheimer’s patients basically starved to death or died from dehydration, being unable to eat or drink. This did not sound like a good way to go, or process to watch. I dreaded the final days and weeks.

I don’t like to think back on the last weeks of Mom and Dad’s life together in their home with the series of desperate days trying to get Dad out of bed, trying to feed him, watching Mom in an exhausted state trying to catheterize him three times a day in his bed. (The catheters had become necessary years ago following radiation treatment for prostate cancer.)

During the last week of November I retrieved Annie’s Hoyer lift from the garage where it had been covered and stored since shortly after Annie’s death. I scheduled a lift repairman to come and check it out for us to make sure it was working and then I moved it to my parents’ bedroom beside Dad’s hospital bed. By now their bedroom closely resembled a nursing home room with the equipment and supplies we had collected there.

I planned to teach each of Dad’s home health aides how to use the lift. I was going to write clear instructions and post them on the wall.

That Sunday we found out about Mom’s cancer and I took over taking care of Dad for her the next few days during which I had a nurse come and give Dad an indwelling or Foley catheter that would only have to be changed monthly. By Monday Dad started with symptoms of diarrhea and vomiting. By Tuesday evening I noticed his breaths were shallow and rapid. I suspected at minimum that he was dehydrated from the flu-like symptoms. In consultation with my sister who had stopped over, we decided to call 911.

The paramedics came, put Dad on a gurney, rolled him out, and he never returned home.

In the ER we found out he had a full-blown urinary tract infection and was sepsis. I watched the monitor as his blood pressure dropped. They put Dad on a strong IV antibiotic and admitted him to the hospital where he stayed for six days.

In some ways the decision to move Dad to a nursing home was made for us. It would have been craziness to move him back home with Mom having discovered she had cancer. Around-the-clock help at home is really not affordable. It didn’t seem feasible that one of us would be able to stay there every single night indefinitely. And there was no way we were going to leave Mom alone with Dad now that we knew how vitally important her rest would be to her. The medical professionals and support services at the hospital just assumed he was going to a nursing home.

Meanwhile, we were battling Mom’s high blood pressure which we became aware of while she was in the ER finding out about her cancer on Sunday. In retrospect, it was likely the cancer that was causing the blood pressure problem, but at the time we thought it was the stress and anxiety.

We were monitoring Mom’s blood pressure at home and making regular calls to her family doctor giving them updates and  receiving medication changes. Mom’s BP was frequently higher than 200/something, and we were not able to get it lowered significantly.

While Dad was still in the hospital the doctor refused to allow us to continue the over-the-phone consultations and demanded to see Mom before making any further medicine adjustments. I left the hospital where I was visiting Dad, picked up Mom and took her to her doctor’s office. While we were there I asked for his opinion about the plan we were formulating to find a nursing home for Dad with an assisted-living facility on campus. He said, “Bringing Jerry home is non-negotiable. He has to go somewhere.” And then he offered the name of the facility that his family had used and where we ended up moving each of them before Christmas.

It was really out of our hands.

Shortly after Dad arrived at the nursing facility I met with his new visiting doctor there. He wanted to know how aggressively we wanted to treat Dad. I told him Dad had a living will, and was pretty miserable being stuck in his largely nonfunctional body, from my perspective. I didn’t think heroic life-saving measures were appropriate. But I also told him about Mom’s situation. I really didn’t want Mom to have to suffer Dad’s death while she was dealing with her own cancer. “I think we need to keep Dad alive if we can. For now,” I said. He suggested we get Hospice involved. I was concerned that we’d lose the option of giving Dad antibiotics if Hospice was involved and I was afraid of more UTI problems because of the Foley catheter. I was under the impression that once you are under Hospice care it shifts from curative to comfort. And I had read that some people suggest in the end stages of Alzheimer’s that antibiotics are not given to cure infection and prolong life.

I wasn’t ready to lose Dad under these conditions if we could keep him here a little bit longer. I feel bad sometimes for making him endure more when perhaps he could have left sooner. I believe if we wouldn’t have called 911 when we did, he would not have survived that initial infection. We prolonged his life by calling 911. These are difficult decisions to make. I knew in my mind, heart and every ounce of my being that Dad did not want to be here anymore. His life was misery. And if there were moments when he was completely aware of his surroundings and his condition, as I have read there can be, I don’t know how he bore it all.

Anyway, Dad survived the Foley catheter, the infection, the move to the nursing home, and Mom dying. He made it through getting dressed up, transported to, and enduring Mom’s funeral mass. He made it to his 80th birthday that we celebrated the Friday afternoon after my siblings and I made the trip to Piqua and laid Mom to rest in the cemetery in the morning.

2013-01-18-01-candles-sm
Dad, me, and my sister Carol, blowing out the single candle in his pudding “cake” on his 80th birthday, January 18, 2013.

The Thursday after Mom’s funeral, and after Dad’s 80th birthday, I got a call from his nurse. “Your dad had an ‘event’ this morning,” she said. His loyal and compassionate home health care aide was with him at the time. The nurse explained,”He slumped over in his chair and turned gray. We got him back into his bed. I need to know if you want us to do blood work to try to figure out if he has suffered a cardiac or neurological event. Does he have DNR?”

I told her he had a living will and a DNR and that I would be there as soon as I could. I called my siblings and told them what was going on. “I don’t think we want to do any interventions,” I said. My siblings all agreed. I was getting a clear message in my mind as if someone was speaking to me, “Let him go,” it insisted.

So they brought in Hospice Comfort Care. We gathered at his bedside and performed our 24-7 death watch for the second time that month.  Dad was conscious when we all arrived and turned his gaze to each of us one at a time. He was jerking his right arm periodically. We interpreted that as a sign of pain, but later one of the Hospice nurses suggested it could be a spasm or seizure.

It’s difficult to know how much to medicate someone who is nonverbal. We had been through that before with Annie.

I stayed with Dad Thursday night, sitting by his side in a recliner, dozing on and off, but holding onto his hand.

We all gathered together in Dad’s room during the day on Friday. I don’t remember when last he was conscious.

My sister stayed with him Friday night. I knew when I said “Good-bye” to him, before going home to sleep, that I might not see him alive again. It was the third time I had been on a death watch with Hospice Crisis Care. I knew the signs.

The phone call woke me up at about 3:00 a.m. “Dad’s dying,” my sister said. “I don’t think he will be alive by the time you get here.” We got in the car and arrived shortly after he breathed his last at 3:23 a.m. with my sister by his side.

The truth of the matter is that I really don’t know what Dad actually died from. I don’t know whether it was the cancer he had been treated for years ago that damaged his urinary tract making catheters necessary with their associated infections. I don’t know if it was dehydration from his inability to eat or drink much of anything. I don’t know if he had an infection, or if he suffered a “neurological or cardiac event.”  Or maybe it was a broken heart that ultimately killed him.

I do know that for the last five years he suffered from Alzheimer’s in every sense of the word.

We all did.

And I’m grateful that the suffering has come to an end.

2013-01-18-06-Good-bye-sm

Advertisements

19 thoughts on “What does someone with Alzheimer’s actually die from?”

  1. Hi Christine .. a lovely practical, yet empathetic post … from my own experience – the body gives up … I think that’s the easiest way to describe things … I think it’s usually a combination of cancer, organ failure, giving up … just depending … my uncle probably wanted to go, whereas my mother I don’t think felt she was going .. but the body said enough is enough …

    Death seems to be one of those things where once elderly and weak we cannot cope … my mother pulled through her similar conditions the year before, this time when I wasn’t expecting it … she went. I have to accept and did very quickly – their time had come …. and they’d had good lives, in between the challenges of life …

    With many thoughts though … your parents and you have been through much … I’m glad your siblings supported you … and the family and your husband will do so now as you come to terms with where life has left you at the moment. The suddenness is the thing you probably have the most ‘trouble’ with … that I definitely can understand – all the very best as the days and weeks stretch out … Hilary

    1. Thanks, Hilary. You always know just what to say about this. I suppose it is because of your recent experience. My husband said the same thing about the suddenness. It leaves you gasping and grasping to hold on. You give me hope with your own healing.

      I think my mom did give up. She forced herself to get up every morning and take care of Dad until she just couldn’t anymore. Then when she found out it was cancer, I think she let herself relax and quit fighting. The end came quickly after that.

      It is truly amazing what we may be capable of doing.

  2. It’s hard explaining to someone that hasn’t been through it that death can be the best outcome. I saw it with Grandma. I hated losing her, but the woman who died was a shell of who she used to be. It wasn’t any fun for her to be unable to eat or talk, and to spend her days watching cartoons, her apron tying her into a chair so she didn’t fall out. I was so sad when she went, but I was happy for her that it finally ended.

    Nancy

    1. I know you understand. Thanks for sharing your grandmother’s story with us. Clearly whatever happens after this life, she isn’t suffering here anymore.

  3. I learned a lot in hospice home care for five weeks for my mother. The finances of this care ought to be made more apparent to caretakers. If you place in nursing home medicaid pays but depending on the state will try to recoup from the estate, 100% of cost or some percentage of cost. If declared terminal by doctor(less than 6 months to live, extensions available) medicare, not medicaid, even if it is home care with hospice professionals monitoring foots the entire bill. Unfortunately in times of grief and stress these expenses must be considered by the caretaker. I am in acceptance of mother’s passing but that I slept next to her every night those last five weeks and watched her slip back and forth from life and death fully cognizant, well the whole aura of that dominates my thoughts.

    1. Fortunately we didn’t get into that confusion as they both had long-term health care that was paying for most of it up until the end. I know that when we were first trying to figure it all out when Dad went to the nursing home, I was completely flummoxed by it all, especially since we were under great stress, anxiety, and grief.

      I’m really sorry for your loss, Carl. My last days and nights that I spent with first my mom and then my dad weigh heavy on my mind too. I understand what you mean when you say, “the whole aura of that dominates my thoughts.” I think it is just a journey we have to go through to understand or accept what happened and be able to place it all on a shelf so that we can move on with our lives. It will take time. Of that I feel certain.

      Thanks for sharing your experience with us.

  4. Thank you for sharing that, Christine. It’s hard for you, no doubt, but it might well be cathartic to do so.

    My aunt was diagnosed with Alzheimers. In the early stages, her personality went from take charge and domineering to soft spoken, and she tended to be forgetful. But she got a cancer diagnosis soon after, and the cancer is what led to her death. My parents thought it was more merciful, in a way. She was still herself mostly, the full ravages of Alzheimer’s not impacting her yet.

    1. It is difficult for me to write about it all now. It makes me wonder how I ever wrote Annie’s story so soon after her death. Although truthfully, I didn’t write about her last days until a year later.

      I’m sorry about your Aunt. What terrifically bad luck. Your family must have been reeling from it.

      It’s hard to imagine, cancer being the formidable foe that it is, but I agree with your parents. On a list of bad ways to exit this life, I think Alzheimer’s ranks close to the top.

      Now I’m left wondering what my future holds and what I may or may not be able to do about it now.

  5. Thank you for sharing your mom and dad with us, Christine. Through your words I’ve come to know the depth of love families have for one another. We don’t often think about it, just going about our daily lives of doing. Your story makes us pause and take note of all we have that is good…even great.

    Watching you emerge from a tunnel of darkness gives us all hope…and comfort…that we too can endure watching loved ones suffer…and die. If only God would let us not bear this cross…as his own Son had asked while praying in the Garden at Gethsemane before He was betrayed by Judas.

    Even in the midst of your suffering, Christine, you have written so eloquently of your parents…and your unflinching love for them…even as they, your dad especially, became the children to your parenting.

    God bless you and your family as you go forward …with cherished memories of all that was and remains…wonderful in your life. Your beautiful garden, for example, and the spring flowers that are blooming…beckoning you forth…into the sunshine of another day.

    hugging you…across the miles…hugmamma. 🙂

    1. It’s so good to hear from you. I hope all is well with you. I’ll be over to visit whenever I can get back to it. I suspect you may know how far behind I am. . .

      Thanks for giving me a reminder of things to look forward to. That keeps me going and helps me get up in the morning.

  6. You write from the heart, and my heart follows yours when I read your words. I watched my grrandmother die from ALS, but that was not what killed her, in her case, she wouldn’t let it, she didn’t want to die that horrible way. I don’t know what it was officially, a general giving up of a body and a will, but I too was grateful for the suffering to end, even in our sorrow. Thank you for writing about this.

    1. As bad as Alheimer’s is, I think ALS is worse. I think at least the Alzheimer’s patient is often in a state of not really being cognizant of what is going on. That is not true for ALS victims.

      Thanks for sharing your grandmother’s story. Life and death are difficult to understand sometimes. But we’re here, and we have to do the best we can while we can. I don’t know if it is any more complicated than that.

  7. I love these pictures of your dad. I sure do think about them alot. I hope you and everyone in the family are doing well.

    1. Did you see the picture in a previous post where Dad was dressed for Mom’s funeral? He looks very dignified. I really miss him. It’s amazing.

      Don’t be a stranger. Let’s have lunch sometime.

      1. He looked so nice at your mom’s funeral. I will never forget the way he looked at me that day and tried to speak to me. I truly think his heart was broken. They had a special kind of love. They were both such amazing people. I am very lucky to have known them, and all of you.

        I would love to do lunch sometime, I will be in touch.

Comments

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s