With suitcase in tow

In the short and cold days of January I drive to Hospice where spots of packed down and slippery snow coat the parking lot. I pull my loaded overnight case with wheels out of the trunk and settle my tote bag on top. It contains my iPad, a book to read, Werther’s original candy, some Dove chocolates, and important papers that include the Healthcare Power of Attorney documents for both my Mom and my Dad that I have been informed I need to have with me always. The tote bag also holds a small purse that I am never ever without. It contains my cell phone and a small notebook I created with all the information that I need at my fingertips including phone numbers, social security numbers, doctors numbers, medicine lists, insurance card numbers, and other pertinent information.

I turn around, pulling my bag through an inch or two of snow, and move towards the door with care not to slip and fall. The man with the silver hair in the enclosed golf cart pulls up beside me and offers me a ride. Although I accepted one the last time, today I decide it is just as easy to keep walking than to lug my suitcase into the cart and back out again for such a short distance.

I sign in at the Hospice front desk and make my way down the halls to my mom’s room with my suitcase in tow. My sister K. has packed her things back in her bag and is getting ready to go home. The air mattress she brought, after we determined the chair that pulled out into a hard bed was beyond hope even with the addition of a foam pad, is leaned on its end against the wall in the corner behind the recliner. K. was right that it fits on the floor between the two chairs in the room, but just barely.

I remove my wet boots and place them behind the door where they will make a small puddle that I will clean up later. Mom is awake and we all talk for a few minutes while I remove my hat and coat and get my slippers out of my suitcase. K. and I keep our spirits up for Mom and our tone has an element of celebration to it. We are all here together chatting. We are family and we need each other.

K. goes over the highlights of her 24 hours with Mom and hands me the stenographer’s notebook with green lined pages that we keep a running journal in. She puts her coat on and leaves, pulling her overnight bag behind her.

Mom dozes off.

I settle into the recliner and read K.’s notes from yesterday:

Lunch: 1/4 C of tea

3 small pieces of turkey

3 small bites of sweet potatoes

1 sip of milk

3 oz of vanilla milkshake

1/2 roll

Supper: 3 spoons of chicken and noodle soup with crackers

10:00 p.m. We had to wake her up for her meds. She was very groggy. We used applesauce to make it easier for her to swallow.

4:30 a.m. Mom woke up and went to the bathroom alone. She was in pain when she got back to bed. We got an I.V. for the pain.

8:30 a.m. Breakfast. Very groggy—couldn’t focus on eating. She took 1 bite of eggs by herself. I gave her a few sips of tea. I gave her one small bite of eggs, a tiny bite of bacon, and tiny bite of toast. I put the tray to the side—

*Meds are being given with vanilla pudding now (or apple sauce).

*She can have more pain medicine at 2:10

*Ask about the IV. How does it affect grogginess?

I try to rest with my feet elevated. If tonight goes like the previous ones, I will be up a lot helping Mom to the bathroom and trekking down the hall and through the sprawling building to the snack area where I can warm up Mom’s heating pads that seem to bring her comfort.

I go through the routine of watching Mom not eat, and recording it, watching the clock and asking for her medicines on time even if she is sleeping through it. We have learned from experience that we don’t want to delay the meds. I have a few short conversations with Mom when she rouses, primarily about the minutiae of her daily life here.

“I have busy days here,” she tells me from her hospital bed from which she only rises to use the bathroom.

I do the best I can to keep her comfortable and anticipate her needs. I sleep when I can. I talk to the doctor and nurses when they come and tell me again that Mom is on a steady decline. They don’t tell me anything I can’t see for myself.

I keep detailed notes for my sisters all the while.

Sometime before noon my sister comes to replace me. I have returned the air mattress, that I wrestled into place on the floor last night, back to its spot against the wall behind the chair. I have returned my things to my bags. I pull on my hat, coat, and boots; kiss Mom good-bye and leave with my suitcase in tow.

~~

Five months later I watch for my sister K. to arrive for an overnight visit. I’ll show her how I arranged Mom and Dad’s china in the cabinet, and the display I created with Dad’s flag and army badges and metals. I’ll show her the shadow box where I arranged my share of Mom’s costume jewelry pins that Dad always gave her. I’ll show her the scrapbooks I’ve finished and the photos I’ve still to scan.

She arrives, parks her car, pulls out her overnight bag and enters our house, suitcase in tow.

We are family.

We need each other.

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.

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.

If I were an artist

If I were an artist, or had any artistic ability whatsoever, I would paint the scene outside the window beside me where I sit with my feet elevated in a recliner beside Mom’s bed. She has just now fallen asleep so I will have to save her lunch for her when it arrives in the next few minutes, although I know she won’t eat more than a bite or two of this or that.

This room at Hospice of Dayton is comfortable and the service superb. Mom has been here under their care since Thursday afternoon when she left the hospital to transition through here before going back home to her new little assisted living apartment. “I just hope I feel good enough to be able to enjoy it here,” Mom said of her new apartment after we moved her in but before all the original artwork from family members was hung, framed pictures still setting on the floor in stacks leaning against the walls.

I do too, Mom. I do too.

Christmas evening my little celebration planned for her and Dad got derailed when the nurse taking care of Mom said, “I’m so glad you’re here. Her blood pressure is too high and we may need to send her out tonight.”

Mark and three of our kids went over to the nursing care unit to visit Dad, while I waited with Mom to determine the success of the latest attempt to lower her blood pressure to something considerably lower than the 247 it was currently at. The nurse, under the guidance of the nurse practitioner, had been working on this for over two hours. My siblings and I had been fighting Mom’s skyrocketing blood pressure ever since she found out about the cancer throughout her abdomen on December 2nd. Her blood pressure could have been high longer than that from the stress of taking care of Dad at home and helplessly watching his decline. We don’t know because Mom was unwilling to leave Dad and go to the doctor for her own medical concerns which included increasingly painful digestive problems.

“We think she should go out to the hospital,” her nurse said.

Mom didn’t want to go.

“I think we should follow the medical advice we’re getting,” I told her. “That’s what you want me to do for Dad, don’t you?”  I need to make these kinds of decisions now  that I am the health care power of attorney for both Mom and Dad.

“I don’t want to leave your dad,” she said.

Dad is a little walk away, through a door and down a long breezeway. And even though Mom’s not felt good enough since she’s been there to see him more than once, I made a promise I hoped I could keep, “You’ll be able to see him when we get back.”

So we went to the hospital on Christmas night. Hospice came there on Thursday. And we moved Mom to the Hospice care site for 5-7 days to try to get her pain and symptoms controlled and develop a care plan she will be successful with when she goes back home.

I have at least found a temporary place of rest here. I spent Thursday night in her room on the chair that converts to a bed. I lied, on the relatively hard surface, awake watching the tiny dots of green light float across the ceiling and down the walls from the projector on the shelf above Mom’s bed. It looked like a million stars in the night.

And now I sit and look out her window at the snow scene beyond. A lamplight stretches up beside a sycamore tree. They mark the edge of a pond. The limbs of the trees in the woods beyond the water are decorated with white. A bright red cardinal landed on the evergreen beside her window for a moment. It’s quite lovely really.

If I were an artist I would paint it.