The Last Goodbye

by Goldie, written September 16, 2019

When the end came, it came quickly and unexpectedly.

My brother had finally talked Mom into letting him move her to Houston to be near his family. She was excited about the move and was telling everyone about it. I suspect she was still quite anxious about this change, how much so, we’ll never know. She didn’t make it to Houston.

I was just about to walk out the door to go to the dentist when the first phone call came. It seems my name was still listed as the first one to call in an emergency. It was a social worker from the hospital calling to tell me Mom had been brought in to the emergency department. They hadn’t completed their evaluation yet, but from what the facility told them, it sounded like Mom had had a stroke or a brain bleed. They would call back when they had more information, but in the meantime, did Mom have advanced directives? She did, of course, the facility required all residents to fill out these forms. There hadn’t been time to grab the papers before the ambulance came, so they were calling me.

I had just about enough time to call all my siblings before the phone rang again. It was the doctor. He asked what I knew of Mom’s condition and I told him. He said Mom might be having a stroke or brain bleed, but the labs didn’t really indicate this. However, her breathing wasn’t normal and her blood pressure was very low. He said it looked as though she was starting the dying process. What did I want him to do?

After taking a deep breath, I told him if the dying process had started, we needed to respect that.

I wanted to scream and run away. I didn’t want to be the one to have to answer this. My brothers got along with her much better than I did, why hadn’t the hospital called them? I wanted to go to the hospital, but I was grateful I couldn’t. The memory of my dad’s passing was still painful. I didn’t want to be the one to make these decisions again.

The doctor gave me time to stumble over my words and say things twice, three times. He told me it would probably be just a matter of hours. It was possible she might rally for awhile, but it wouldn’t be long. He said she looked as though she was having some pain. Did he have my permission to give her pain medication? Of course.

The social worker talked to me as well, then I called my siblings again. This call was harder. My brother in Houston was already arranging to fly to Denver to be at the hospital with her. Then I could relax as he would take over.

Ten minutes later, the social worker called to let me know Mom had passed.

More phone calls. The tough ones.

Then I got a call from the facility to fill in the details. It seems Mom had gotten up, gotten dressed, put on her make-up, and combed her hair. Then she walked down to the clinic office and was chatting with the staff when suddenly her left side collapsed. The staff caught her and lowered her to the floor and called for an ambulance. It seems the facility had planned quite an event. One wing of the building was going to be demolished to make way for something newer and nicer. She was dressed up for a demolition party.

I’m glad she left quickly. I’m glad she didn’t have to go to a nursing home. I’m relieved we had six months of pleasant phone calls before she passed. I’m relieved her suffering is over. She had seemed truly happy over the last week or so.

In a week, we’ll be flying back to Colorado for her funeral. We’ll also go through her apartment and clean it out… a daunting task. Friends are calling and writing. Often they tell me to hold on to my memories of Mom, my memories will comfort me.

I only wish I had some good memories of her.

And, in Conclusion...?

by Goldie, written August 6, 2019

It’s been 8 months since Dad died. A lot has happened since then and, though I still feel guilty at times for running away, I’ve realized this really has been the best thing for us and for my relationship with my mom. Having 2000 miles between us seems to have had a positive effect because we’ve had only pleasant conversations over the phone since we left.

Mom is having a hard time. She is anxious and lonely without Dad. My youngest brother still calls her twice a day. The rest of us call at least once a week. Youngest brother will let us know if Mom needs more calls, more encouragement on a particular day. I know, though, that she would be having just as hard a time if we had stayed there. Because we moved, the staff at the facility has been checking on her more and friends in Denver are checking on her. She is well cared for.

And life for us is good! It’s still hard for me to plan ahead, but I’ve been more relaxed than I’ve felt for years. We won the lottery when it comes to next door neighbors. We are quickly becoming good friends. I’ve found a nice knitting group and am meeting a lot of people. We chose this house partly because there is enough room for family to come and stay. Our son and his fiance will arrive on Friday – to stay! They are joining us here and will live with us until they are settled.

It’s a little odd to not be constantly thinking about what Mom and Dad need and when should I go over to clean the apartment and what should we do with Mom’s stuff. Instead, we went to an asparagus festival, picked our own blueberries, and bought ice cream at a dairy farm where you can meet the cows that gave the milk for the ice cream.

I’m not a caregiver anymore! Life is a lot easier.

rrrrring

“Hi Terri,this is Jodie from The Gardens at St. Elizabeth’s. I hate to bother you, but some issues have come up with your mom.”

Sigh. Okay, mostly not a caregiver anymore.

The Stories We Tell

by Goldie, written August 2, 2019

Part of me was very much at peace with Dad’s passing. Perhaps going to St. Paul’s gave him the permission he needed to leave. Had Mom been there, he would have desperately wanted to hold on. A few days before, he had told me, “This is a funny thing. Either I’ll get over this or I’ll just go.” I asked him whether he’d decided yet and he shook his head no, “But at least Mom is taken care of and all the arrangements are made.” I knew him well enough to know how strong his feeling of obligation was to her. I could just hear him saying, “Mom says I can’t go. She needs me here.”

He knew he was dying. I knew he was dying. Even though it hadn’t been obvious to the Palliative Care Nurse, why hadn’t I had the courage to say it? Maybe if I’d said something, we could have surrounded Dad with family and together shared this sacred time. Maybe we could have done it right?

I know why I didn’t say anything. There was no way I could say this in front of Mom. Looking back, it might have been better if I had. One of the issues with Mom has been that everyone has always tiptoed around her, afraid of her anxiety issues and her anger. Dad had been a big part of this, I know. It was one of his faults, but I understand. I also know Mom’s anger all too well.

So many things were going through my head as I tried to grasp all we’d been through the past few weeks. The very next step, even though it was the middle of the night, was to call my siblings. I took a deep breath and dialed. One of my brothers was in Denmark on business. He was the easiest to reach because of the time difference. By the time he answered, I had already altered Dad’s story slightly for my family. I didn’t lie to them, I just left out a couple of bits. Let them remember the good parts. Is this tiptoeing around them? I don’t know.

Death is a sacred time, but it also has everything to do with our physical body and that can be messy. Then there’s the emotions. We know how messy they can be. I wanted to let Dad have his story, his sacred passing. I wanted my sibs to have that story, too.

I told them how we were met at the door by the women who had given us the tour, how one resident had come over to sit with us at dinner and make conversation to welcome Dad. I told them how we’d met the social worker and found out she had a facility dog with her and how she brought the dog to see Dad, even though it wasn’t the standard practice to do this on the first visit. Dad loved dogs. I told them about the nurse who checked Dad in. He was from Kenya and was interested in Dad’s stories from his visit to Africa. I told them about the dietitian whose last name was Myers, spelled the same way we spell it. I told them how wonderful everyone was to Dad and how upset they were to have to call so quickly and tell us that Dad had passed away. All this had happened in those few hours he was at St. Paul’s.

I didn’t tell them about the roommate. I didn’t tell them he was found on the floor. I can hold these details. In the long run, they’re not important. Sharing them now helps me to find their proper place in the whole story.

My siblings all agreed I should wait until morning to tell Mom. No need to wake her in the middle of the night. I also made sure the Palliative Nurse from their PACE program and the Patient Representative from the facility were with me when I told Mom. I was terrified she was going to blame me. She was fairly calm when we told her, though she questioned over and over, Why had he died? What was it that killed him? The nurse explained that Dad had congestive heart failure. The patient representative said, “It was just his time.”

My sibs all came back and ten days later, we had a lovely funeral Mass for Dad. My brothers planned the funeral. I was numb. The church was filled with family and friends and many members of the Eritrean community in town. My parents had sponsored a number of young men to come over as refugees. They brought traditional food to share as well. They promised to come and see Mom as often as they could.

I was encouraged, but still feeling guilty. We were leaving the next day to visit our son and his family in Maine and to look for a new home in Massachusetts. I felt like I was running away.

In Onlys

by Goldie, written July 29, 2019

If only we had talked to the Palliative Care Nurse before presenting the whole idea of moving to Mom.

If only we had known how short our time was to be with Dad.

If only I had been more understanding of Mom’s feelings rather than having my insides knot up and all my old issues with her come to the surface.

If only my siblings had still been in town.

But life doesn’t let us write the script.

Dad wasn’t thrilled with the idea of going anywhere, but as with most things, he accepted it and couldn’t remember from one minute to the next where he was going and why. Mom yelled at me until the driver came to pick up Dad and take him to St. Paul’s. Did Dad want to go, she demanded rather than asked. Why couldn’t she just take care of him at home. They had always taken care of each other. (Not really, Mom. He always took care of you.) 

The questions and accusations hit hard. I had assumed Mom would come with me in the car and help get Dad settled in, but no, she didn’t feel like getting out.  This meant, and she made sure I didn’t forget it, I was taking Dad away from her.  When the driver arrived, we had to go quickly. Mom kept asking Dad if he wanted to go. For better or worse, Dad couldn’t hear her. In that moment, I was sure this was the hardest thing I’d ever had to do.

Arriving at St. Paul’s, the admission’s director met us at the door. She was the same woman who had given me a tour a couple of days before and she had recognized our names. I was grateful to see a familiar and friendly face. We were taken to Dad’s room and met his roommate, a man who was not keen on suddenly having to share his space. Dad and I had dinner together and another resident sat with us and talked to Dad. Even though Dad was clearly not feeling well and couldn’t hear the conversation, we managed to communicate a little to him. I was grateful for the resident.

I helped Dad get ready for bed, stayed during the preliminary intake conversations, helped Dad to the bathroom, and then, once he was tucked into bed, we called Mom. Dad talked to her and told her I had gotten him settled into the hotel. I had told Dad I’d bring Mom the next day to visit. Mom said she would see. She might be busy. Grief is a complex emotion.

At last, I reluctantly said goodnight to Dad. I kissed him on the forehead and told him not to let the bed bugs bite. He rolled his eyes and I realized he undoubtedly had memories of cheap hotels and bed bugs.  He asked if I’d be back in the morning and I said yes. I said goodbye to his roommate, but I won’t print his reply. I was again glad of Dad’s lack of hearing. I left, but stopped by the desk to remind the nurses and CNA’s that Dad needed help walking to the bathroom and he didn’t remember he needed help. Could they please check on him often? They promised they would.

In that moment, I was sure that leaving Dad at St. Paul’s was the hardest thing I’d ever have to do.

Then the call came just before midnight. The nurse had gone in to check on Dad and he was on the floor and had passed away. He had spent less than 7 hrs at the nursing home. I woke my husband and said I needed him to come with me. We drove across town and a security guard let us in at St. Paul’s. All the staff on the floor were in shock. We went in and saw Dad. I sobbed, hugging and kissing him and laying my head against his chest. I was aware of how privileged I was to be there in that moment and how much I didn’t like being the only one of the family there.

I was also aware of something else. In the most sacred moment of his death, he had been alone, on the floor. I hadn’t been there with him. There was no family gathered round, only an unpleasant roommate.

Oh God.

How was I going to tell Mom?

(getting there…. )

Sacred Times

by Goldie, written July 29, 2019

When our sister-in-law’s father died, his family were all in the room with him at home. The hospice nurse was there. Though he was not responding anymore, his wife, children, and grandchildren talked to him and encouraged him on his journey. They sang Broadway show tunes as they had at many family gatherings for years.

Death has a mystical, spiritual quality and this makes us want to do it the right way. Anything less and it becomes a tragedy. I had heard so many wonderful stories like the one above and I wanted so much to help my Dad have a peaceful passing, surrounded by his family. Unfortunately, life doesn’t allow us to write the script.

When Dad had become so weak, he needed help walking to and from the bathroom, I knew we needed to make some decisions. He didn’t remember he needed help. My sister and I took it in turns to stay with my parents and listen for Dad. Often, he would make it to the bathroom before I woke up. I’d jump off the couch and grab the walker on the way. When he was finished in the bathroom, he would see me and, with a look of gratitude softening the lines of pain a bit, he would turn and sit on the seat of the walker. I’d push him back  to the bedroom, the walker facing backward, me leaning forward to stabilize Dad, my face against his, cheek to cheek, for a slow dance back to bed.

My brothers had gone back home. My sister was on a mission to try and find a place for both Mom and Dad to go together into a nursing home. She and I visited a couple of places. There was one place which had been recommended by friends and was not far from my parents old home and the church they had attended. My sister felt this would be a good place and we started the process of putting them on a waiting list. Then we talked with Mom. She was thrilled they could go together and be closer to their old home. I was wary. My sister was convinced this would work, but we hadn’t gone through the PACE program, which managed their Medicaid. I was afraid we were jumping the gun.

My sister left for her home in California the next day.

We were jumping the gun. When I talked with the Palliative Care Nurse, she let us know that Mom would not meet the requirements for needing nursing home care. Dad might meet the requirements. He was still looking good enough and greeting people and even joking a little with them. His vital signs weren’t bad for having gone through a recent bout of pneumonia. She wasn’t sure he would qualify for hospice yet.

What we could do is admit Dad for observation – 5 days of respite care in a nursing home. After the 5 days, he’d be evaluated. The nurse started the paperwork and got in touch with the nursing home we had seen and we waited. On her recommendation, we also added a second nursing home possibility in case this one didn’t work out. The second one was on the other side of town, but seemed very nice. When I visited, a resident came to me to tell me how much he loved living there. That helped.

The first nursing home never called back and never followed through with any of the paperwork. The second one had an opening and … guess what? It was now up to me to talk to my parents and convince them this was what we needed to do.

(and onward.. )

Wrapping things up

By Goldie - written July 28, 2019

Why does it take so long for the roller coaster to stop after our caregiving days are over? I put off making plans with a new friend until the very last second because I didn’t want something to come up and have to cancel. We know how that goes, right? No matter how much we try to organize and get things done ahead of time, there is no time we can really, truly call our own. One phone call and all our plans change.

It’s taken me six months to finally realize my caregiving days are over for now. Mom is still living at the same assisted living center in Colorado, but my family and I have moved to New England. The timing was awkward as my Dad passed last November and we moved in February, leaving Mom alone in Colorado with none of my siblings living in state. She was not pleased.

But then, I should start a little bit before this.

Dad started declining more rapidly last summer. He rarely got up out of his chair, never went to the dining room, and he slept most of the time. He was visibly losing weight again and he was having more angina attacks. It was clear he would either just not wake up one day or we would need to look for a place where he could receive more care. My sibs came out to visit. We talked together about the next step and my sister and I toured several nursing homes.

Mom was becoming increasingly anxious about Dad’s health and, as has always been her way, she expressed her anxiety through anger. She made fun of Dad’s memory issues and deafness in a derisive way as though he was preventing her from enjoying life. To be fair, she was terrified of being without him and being alone. She was used to having Dad as her servant, good and true. How would she manage without him? She was angry with him for being old and sick and dying.  I know that’s not abnormal, but this was my dad! I was not very understanding. How dare she say those things about Dad when he took care of her so graciously when she became psychotic!

Dad was still in love with her and he made sure I did not forget.

At the same time, we were finding it a challenge to make ends meet in Colorado. Housing prices had skyrocketed and so had homeowner’s insurance. While we were still paying all our bills on time, we had little left for day to day expenses. There was nothing left for anything extra, like going to the dentist. After debating various possible solutions, one stood out. We could take advantage of the housing market, sell our house, and move someplace where we could use the proceeds of our sale to buy a house outright.

The reactions of the family were as follows: our kids – “We’re in! We’re coming with you!”  my sibs: “You’ve done more than your fair share. Go for it! We’ll take care of Mom” (!), Dad: “That’s nice” Mom: “It’s not going to work out like you think it will. Moving is not a good idea. It would be nice if you’d taken other people into account before you decided this.” My cousin, Jane: “It’s about goddamn time!”

Which meant I went back and forth between guilt, excitement, fatigue, relief, and anxiety. Regardless, we plowed ahead. We made plans to go out and visit our son and daughter-in-law in Maine for Thanksgiving and then take a week to visit Western Massachusetts. Our flight was to leave on November 15.

Dad was getting weaker and weaker. My siblings all came out again in October and early November. They came from California, Texas, and Kansas.

(And here I’ll leave it for now – not meaning to leave a cliffhanger, I can only write about this in bits. It’s exhausting, even now, to relive this time. More tomorrow. I promise.)

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