Unmoored – eighteen months later

I wrote the post below a couple of months ago now. It has been patiently sitting in my post folder as a draft. I decided to go ahead and post it today even though it is dated. The eighteen-month anniversary of the passing of my parents has passed. And although I didn’t feel so just a few short weeks ago, I’ve begun to feel as if I have turned a corner. I feel like the fog is lifting and I am recognizing myself again, caring about things again, having more self-direction. I can’t promise this feeling will stick, but I am hopeful that the intense grief has passed and I am becoming accustomed to life without Mom and Dad.

That being said, I woke up crying one day last week from a vivid memory of Mom. When I was attending college in my hometown, I lived on campus. My long-time, four-year boyfriend and I broke up and I was pretty torn up about it. I gathered my dirty laundry in the morning after a sleepless night. And as soon as I deemed it late enough to arrive, I drove over to my parents. My roommate had called my mom without my knowledge. When I got there, Mom was standing at the door, in her robe, waiting for me. This makes me cry again today just thinking about it.

But what I realize today is that I may always have moments of tears about Mom and Dad. That’s okay. I suffered a loss. And the truth of the matter is that life will never be the same. It’s a new world.

June 29th, 2014

In a couple of weeks it will be the 18-month anniversary of my mother’s death. A year and a half. And the reason I’ve paid attention to that is that somewhere earlier out I Googled how long we grieve for a parent and I read somewhere that it’s different for everyone, but somewhere from 9 to 18 months is typical.

I’m approaching the 18 month mark for my mom’s death. And two weeks after that, it will be 18 months since my father died. So I wonder again whether I grieve for them simultaneously or consecutively which would mean I get three years to grieve.

Eighteen months. Is that all the time it’s been? it seems like forever.

Most days I think I am doing quite well, but every now and then I have a bad day where I find my self sobbing, with a deep gut-wrenching pain that reminds me how much I miss her, him, them, and how I’ll never see them again.

Am I getting through this okay? I wonder.

My sisters are my reality check.

My sister C. will call and say, “I had a really bad day the other day about Mom and Dad.”

“Me too. I’m not sure why, but I found myself crying again,” I say.

Then I’ll talk to my other sister. “I had a bad day earlier this week.”

“I did too,” K. answers. “I don’t know why. I have trouble at night before I fall asleep. I just think about everything that Mom went through, and I feel so bad for her. We really went through a traumatic experience.”

“Sometimes I cry for Mom and what she suffered and went through in the last years of her life,” I say. “And sometimes I cry because I want to talk to her, or because she doesn’t know I had a hysterectomy a few weeks ago.”

“Sometimes I feel really bad about what Dad had to go through,” K. will say. “I really hope I don’t have to depend upon other people to take care of me.”

Life does go on, but for me life will never be the same. Some things become less important, like finding the right window treatment for the dining room. And some things become more important like my personal relationships. I try harder to stop parenting in what can only be received as a judgmental way. And when I’m not able to hold my tongue, I find myself explaining my perspective and apologizing more. I try to nurture the sometimes fragile relationships I have with my siblings. And I make an effort to find ways to enrich my husband’s life.  How I will be remembered is much more important to me. Being in control, having things my way, and being right don’t matter so much.

I still continue to feel like an unmoored ship, directionless, no one behind the wheel.

But maybe that’s okay.

 

See more posts about my journey through grief.

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.

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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.

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Reunion in heaven

It’s possible my dad could not bear to be here without my mom. Or perhaps she could not bear to be, where ever she is, without him.

Dad went on Hospice crisis care Thursday afternoon and quietly departed this life at 3:23 a.m. Saturday with my sister at his side.

After surviving the Great Depression as a child; serving in the army in Germany for two years during the Korean War; fathering and raising five children to adulthood; caring for a disabled daughter for 51 years; providing employment for others through a small business for many years; remaining a loving and faithful spouse for 59 years; participating as a faithful follower of Christ his entire life; surviving prostate cancer for more than 10 years; and enduring the ravages of Alzheimer’s on his cognitive and physical abilities for over five years; Jerry A. Smith is finally at rest. He was an intelligent, responsible, hard-working, loyal, and loving son, brother, husband, father, and grandfather. May he rest in peace.

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Father’s Day

Just like last year, I’m in a dilemma about what to post for Father’s Day. Maybe I should just post a bird photo and ignore the whole thing, I considered. Then I thought maybe I should write a “What I’m not getting you for Father’s Day this year,” post that lists all the things I used to be able to buy for my dad but can’t any more: fishing poles, wood tools, a book about WWII, gift cards to Panera . . .a tie. That would be depressing. Instead I found my post from last year, and I’m reposting it. This is a first for me, but I think it still applies.

~ ~ ~ ~ ~

Over the past three days I’ve tried to write this post for you, Dad.

I wanted it to be a happy tribute to you where I talked about all the things you’ve done for me over the years. Like the time when you took me sledding at Mote Park and halfway down the hill I heard you yelling my name and turned to see you running down the hill behind me. A much larger boy was on a collision course with me, and you were yelling for me to roll off the sled. I can’t remember how that all ended. I only remember you trying to save me and that I didn’t get hurt.

I started looking through old family photographs, thinking maybe I could do a photo collage of you for this Father’s Day post. But what I found were photo after photo of me and my sisters and brother and only a very few photos of you. Mostly they were of you holding Annie for her photo.

Why didn’t you have someone take more pictures of you, Dad? I’d like to ask you that.

You were always behind the camera looking at us. I do the same thing. I take most of the photos. When one of the kids complains that I’m not in many, I just say, “I’m in them all.  I’m looking at you.”

I love this picture Carol took of you when she was in high school and taking a photography class using the 35mm camera you carried through Europe. This is how I remember you most.

Did I ever tell you how proud I am of you and the successful man you made of yourself from your rocky beginnings? Do you know that’s how I feel about you?

Do you know how much I value your home-grown, down-to-earth wisdom?

I know it always bothered you that you never went to college, but I don’t care at all. I’ll always consider you one of the smartest men I’ve ever known.

Do you know that?

What do you think about what you’re going through now with Alzheimer’s?

There are so many questions I’d like to ask you.

But I don’t want to talk about that now. I don’t want to talk about what we’ve lost. I want to talk about what we have.

For today I just want to say how proud I am of, and how much I love the man you were . . .are. The man you are.

Happy Father’s Day, Dad.

Here’s to you, looking at me.

1958 – From left to right — my sisters Carol, Kathy and Me

I’d like to wish everyone a Happy Father’s Day:

If you are a father, I hope you will be the best father you can be.
If your father was not the best man he could have been, I hope you can find it in your heart to forgive.

If your father is still with you on this earth, I hope that you will cherish every moment.
If your father is no longer here, I hope you will find comfort and peace in your memories.