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.)

0

G'night Dad, Sweet Dreams

 by Goldie

Dad passed away just before midnight on Monday, November 5th. Days before, he had told me, "You know, 93 is right on the brink, but 94? You might as well pack your bags." He didn't feel "peachy keen" anymore, though he still often said he did. He confessed to me one day that he felt like "horse doo-doo", strong words for my dad who never complained. He had been diagnosed with pneumonia a few days before. He also said, "This is a funny thing. Either I'll get over this or I'll just go." I asked if he'd decided which he'd do and he kind of chuckled and shook his head no. "But at least Mom is taken care of and all the funeral plans are made." He said this very matter of fact.

  

When Dad couldn't walk anymore, my sister and I took turns to stay with them. The facility staff does not do transfers or help with toileting. After Cathy left, I just moved in with them to help out. Oddly enough, though he was clearly getting weaker and weaker, his vital signs remained normal and the palliative care nurse didn't feel he was necessarily ready for inpatient hospice. So, as a way to get him some help and evaluate further, they recommended having Dad go for a "medical respite" at a nursing home in town. He was transported Monday evening. I followed and stayed with him until 9 that evening. We called Mom from his room and he told her that I had gotten him settled into the hotel.

  

Before I left, he asked if I'd be there first thing in the morning. I certainly was. The call came right before midnight. Dad's stay at respite care had lasted about 7 hours. I truly believe Dad's leaving for the respite care gave him the permission and the space he needed to leave. I feel very much at peace with his passing.

I'm glad Cathy was able to come out one more time last weekend, and that our brothers, Tom and Dave, had been out very recently, too. True to Dad, he waited until everyone had gone home. I'm sure he didn't want to upset their visits. And up until the last, he was trying to feed us all, offering us the desserts that came with his meals - heck, he offered us his meals, too, and a bottle of Ensure, if we wanted one!

  

He was my dad, and in the last ten years, my confidante and my ally. I will miss him terribly.

Changes Afoot

written 6/9/2018

It started in January when our son announced he had accepted a teaching job in Maine. MAINE? Maine. Freeport, to be exact. We knew they’ve wanted to move back east to be near his wife’s family, but it’s always been a someday thing. Suddenly it was real and they were packing and looking at houses for sale. Chris and I looked at each other and pondered life without our three grandchildren just 14 blocks away. We helped out with the grandkids a lot as they packed up, cleaned up, found new homes for their flock of chickens and three goats. We helped take old things to recycling.

The kids are ages 5, almost 7, and 8 1/2. They pull weeds in the garden. They help clean out our chicken house. They keep us endlessly entertained.

They took off last Tuesday in a small moving truck and a minivan with 3 kids, 2 dogs, and a cat. We get updates from them every evening. Tonight they are in New Hampshire. Tomorrow, they will go on to stay with my son’s father-in-law in Berlin, NH, until they find their own place. They will be over 2000 miles away. I won’t be wearing my grandma hat nearly as often. We’ve had them with us at least one day each week. It’s time to figure out who we are… again.

On the other hand, as our grandparent duties are on cruise control, daughter duties are revving up. It’s the time of year to make the rounds of all their doctors and find out my parents are going to live for another 45 years and I’ll be a caregiver at 105. The biggest news is that the assisted living facility is going to be remodeled. In fact, they’re planning on tearing down the building that Mom and Dad are currently living in and building new apartments. They also plan to build a new memory care unit. This is when it became a little humorous.

Mom: I don’t know why they have to put a new memory class here. They could have it anywhere.

Me:  It’s not a memory class, they want to build a Memory Care Unit, a place where people with Alzheimer’s can live. (I figured this was the best way for her to understand)

Mom: They already have a memory class and boy, do they need it. Don’t you remember? You visited it before we moved here.

Me: That wasn’t a memory class, that was the day program. You went to it for awhile.

Mom:  NO I DIDN’T! I never went there because I don’t have any problems with my memory!

And it went on from there. She was convinced they’d be sent to another facility across town. She’s also convinced they’re going to have a bigger apartment and she can finally get someone with a truck to come over to my house and get all the rest of her stuff. I don’t want to spoil her glee, so I didn’t say anything more. I especially didn’t say they will be housed on the same campus, in apartments which are not being used currently. No upgrades, especially not for Medicaid residents. In their building, Medicaid residents are in what is tactfully called the Garden Level apartments. They’re in the basement. With three floors worth of residents to move out of this building, the self pay folks will undoubtedly get the better apartments. That’s how it works. How long will it take to do all this new building and remodeling? Their temporary move may well end up being permanent, as least for my dad.

I miss my grandkids already. I know. My caregiving duties will be less if I’m not caring for the kids every week, but they add such spice to our lives. Like butterflies, they have shed one way of life and are headed to new beautiful possibilities. I wouldn’t want to do or say anything to hold them back. We’ll survive my parents’ move to whichever room they move to and try to be entertained by the mishmash of facts + gossip + various combinations of residents cognitive challenges.

And breathe….

Caffeinated Cleaning

It was a tea party and the whole purposed of the tea party was to drink tea. Specifically, green tea from China in three different varieties representing the coming spring: earth, grass, flowers. The first one had the full, earthy aroma of a horse pasture. Fortunately the taste was a little more subdued, but it was still a very full earthy taste. Not my choice for a regular cuppa. The second one smelled and tasted like grass — regular grass as in a meadow. I declined the offer of a refill. The third was Jasmine pearl green tea. The hostess had found my weakness. I had three cups. We also had some of the best almond cookies I’ve ever tasted. I had several.

Generally I don’t do any caffeine after noon. The tea party started at 2:30 and ended at 5 p.m. We drove home, dropped off my husband and I went on to get groceries for my parents. Back at my parent’s apartment, I put the groceries away, cleaning out the refrigerator at the same time; noticed the dishes needed to be washed and washed them; put away the clothes which were piled on dad’s walker, which meant clearing enough space to get to the closet; noticed there was little space for Dad to walk to his bed so I spent the next hour cleaning the area from the bedroom door to his side of the bed. I hadn’t taken a “before” photo, but here’s the “after” photo:

The combination of caffeine and sugar kept me going for quite awhile. I found a whole box of hearing aid batteries, their old flip phone, a pair of shoes Dad wore 20 years ago, his old clarinet, a pair of jeans that is now 4 sizes too big, and his dirty clothes. Maybe I should do this more often. More jasmine pearl green tea, please. I had enough energy, I actually enjoyed myself.

I’m still waiting for a call from the dental office to see when I need to bring Mom and Dad back for their impressions. Dad asks about 20 times when he’s getting his teeth back. He doesn’t want to leave his apartment without his teeth in. I told him he looks cute. He laughed. Mom wouldn’t let me take her photo. I’ve been checking in on them daily, just to make sure they have enough food they can eat without their choppers. I think Dad’s eating more now then he was before the dentist took away his teeth. Mom, too, seems to like the attention this has brought. She’s getting care packages from my youngest brother and there’s always an extra root beer float from the activities director.

Drawers and Doors and Dentures

It’s taken me a long time to figure this out and it shouldn’t have been so difficult. Part of the reason my parent’s assisted living apartment is so, so cluttered is because they don’t open drawers or doors very often anymore. This has any number of repercussions. First of all, if they don’t see food on the counter or on the coffee table, they are obviously out of food and need to go to the store. It doesn’t matter that their cupboards, refrigerator, and freezer are full, there is nothing to eat. The same goes with clothes. Unless they are on the floor, piled high on the wheelchair, dresser, and bed, they can’t find their clothes. The closet doors are never closed, so I suppose once in awhile they choose something from the closet to wear, but I suspect the bigger reason is because their is so much stuff piled up around the doors, they can’t close anymore.

As I said, it shouldn’t have taken me this long to figure it out. The aha moment came when I went to pick Mom and Dad up for their dentist appointments and physicals. I knew it would be an all day excursion as there is a lot of sitting and waiting involved. I brought my knitting.

I got to the apartment to find out Mom had lost her teeth. She couldn’t figure out where they could possibly be! Yes, she’d had them earlier in the day. She showed me the plastic dish, placed precariously on the edge of the sink, where she put them at night. We looked for 20 minutes or so before I finally said we’d need to go without them. I would help her look when we got back, I promised, even though I knew it could take a week to reach the next stratum.

Got to the clinic, dentist appointments were first. Seems that both Mom and Dad have inflamed gums and Dad has a sore on his. They were NOT to wear their dentures for at least another week. Great. Might give us time to find Mom’s! However, the real issue seems to be they aren’t cleaning their dentures well enough and they still use too much Fixodent. Denture adhesives are not supposed to be necessary and they can make the dentures not fit right. Mom takes her teeth out at any opportunity. Dad doesn’t even take them out at night. In fact, when he took them out and handed them to the nice, new dentist, I thought she was going to lose her breakfast. In order to not have to deal with the mess, they will make Dad new dentures. Actually, it’s probably time. He’s had these for as long as I can remember.

The rest of the visit went okay. Their physicals didn’t reveal anything new. They’re 88 and 93 now. Nothing new is good.

Then, back to the apartment where Mom started hunting for her teeth again. I assured her that the dentist would make her new ones if she couldn’t find hers. Then I spied her teeth sitting neatly on the dresser. An aide had found them tangled in the bed sheets. Before she could turn and see them, too, I scooped them up and put them in my bag. I know she would have started wearing them again. I have both Mom and Dad’s dentures at my house. The dentist had been concerned about their nutrition. What would they be able to eat? She instructed me to feed them pureed food and liquids. Great. The facility does not do special diets. I swore under my breath as I saw one more layer of care duty added to my schedule. I would have to bring them meals.

Had I thought about it more, I shouldn’t have worried too much and the swearing was entirely unnecessary. Last night Mom managed to eat an entire bratwurst on a bun with no teeth. Dad managed two bowls of soup! He has been mostly living on Ensure lately, so the two bowls of soup was more real food than he usually eats.

When I got home, physically and mentally exhausted, my husband and daughter were talking about this wonderful woman they’d read about who had lived to be 108 years old. My mental math is not the greatest, but I quickly realized if Mom were to live to be 108, that would be 20 more years! I’d be 80. I’ve already been their primary caregiver for 9 years. I panicked. As much as we don’t like to think of our carees’ passing, the thought of either one of them being around for another 20 years?

The swearing I did then was entirely appropriate.

Grandma Duty

In the last two weeks, several things happened which made it hard to check in and connect with everyone here. The first thing was, my computer crashed. It crashed, oddly enough, while a Microsoft employee was working on it by remote. A long, sad, and ultimately, unbelievably boring saga later, I have my computer back. The tech in our local computer repair shop says it’s on borrowed time. I was not amused.

I’ve been getting numerous calls from the PACE program my parents are enrolled in, as it’s the New Year and they are being scheduled to see every doctor in the system… and dentist. We must not forget the dentist. The fact that they are scheduling these appointments must mean their Medicaid was approved. It also means I will be driving them a lot. If we sign them up for the PACE bus, Mom will cancel.

And, our son and daughter-in-law decided they are relocating to the east coast area. This is not a surprise. They met back east and her dad lives in New Hampshire. My son had two job interviews over the last week. My daughter-in-law wanted to come along to check out the schools for the kiddos and see the towns.

Grandma was on duty. Today was our last day and now Mama and Papa are back home and Grandma can relax. It was an exciting time…

Watching grandchildren for 9 days is a daunting task; one I loved, but daunting, nonetheless. It’s so easy to get things wrong. I didn’t make porridge like Mama does. I didn’t make enough spaghetti. My attempt at crepes was met with skepticism. They were eaten, but I was told their Mama’s crepes are super good, they are perfect. Tonight, our last dinner together, I thought I’d go easy on myself. We got Thai food from the restaurant they frequent. It’s not easy to figure out exactly what they like and connect that to a menu item. Wouldn’t you know it, the noodles were all wrong.

On another note, we also decided to clean the house (a little), and get flowers and a welcome home balloon for Mama and Papa.. and make cards for them. Okay, okay… I know. It was me who decided we should do this, not them. It wasn’t hard to convince them to play along, but it didn’t go quite as I thought it would. (20 years as a kindergarten teacher, I should have known better). The drawings included funny faces and the words poop and pee figured prominently in their sentiments… oh, and butt hole.

At the store, the kids made it clear we needed to get three balloons. The oldest had even brought a pocketful of change in case we needed more cash.

We got three “Welcome Home” balloons, one of which was fought over until I pointed out that another had both stars AND butterflies and anyway, the balloons were to welcome home their Mama and Papa! At home, the kids, each with their favorite balloon – as in “that one is mine”, ran around the house, the boys chasing their sister. Their sister ran into the kitchen where I was and let me know that HER balloon didn’t like to be with the other balloons, AND its name was Sarah. The other two balloons had funny faces drawn on them by the boys.Flowers, at least, were just for adults. They chose some lovely white roses…and ignored them as quickly as we got them. They looked nice on the table, anyway!

Whatever we accomplished, their Mama and Papa will have no doubt they are home once again.

And Grandma gets a day of rest tomorrow. Until Monday. Then we start with all the appointments for Mom and Dad.

Too Tired, Too Worried, Not Too Merry

It comes in waves, I tell my daughter, breathe and ride it out.

She has a whopper of a migraine, complete with nausea, vomiting, light sensitivity, and the killer headache. The nurse on call said to take Tylenol. Emma knew better. She knew it would come right back up again. So we’re going for all the tools in our pain/stress toolbox — imaging, yoga breathing, stroking her skin lightly, cold washcloth on the head, hot water bottle on the tum. The headache is one of the non-marketable effects of the anti nausea medicine which she takes for the non-marketable effects of the anti rejection drug which she takes to protect the biologic infusion drug which she takes to treat her Crohn’s disease.

“May cause nausea” is an understatement. So is “may cause headaches”. I’m sleeping on this side of the house tonight so I can go to her and help her through when the wave hits hard. I probably won’t sleep much, but I’ll get a lot of knitting done. Knitting calms me.

Yesterday, I had double duty. Grandchildren in the morning — a venture out to the park, home for snack and playing with puppies (two 4 month old Maltese foster pups), started working on homemade bread, thinking they’d help, but instead, we had two little mice children rummaging in my cupboards and making their new playhouses. Took out all the pots and pans and put them in the back room so the mousekins could have their houses. The third grandchild was far too old and sophisticated for this game, so he kept his grandpa company. Let bread sit to rise. Checked on puppies. Cleaned up poop. Washed my hands for the 43rd time. Made lunch. Managed three active and silly children who have decided that poop, pee, and fart are the coolest words ever and must be used at least 20 times in each conversation. Okay, the oldest one knows he’s not supposed to say these words at the table while we eat. Instead, he whispers to his brother and tells him to say them. My husband, Chris, said I handled it well, but I know I don’t have much patience or focus right now.

“May cause nausea” has flared up again. The wave has hit. Emma throws up again. I clean out the pan and bring it back, along with another wet washcloth. I stroke her arms a little and try to keep conversation light, with a bit of humor. After the wave subsides a little, I go back and sit. I’ve been up and down all day, never sitting for more than about 5 minutes at a time.

Emma is calling again. Her dog, our dog Bennie, just threw up on her carpet. Sympathy pains? Maybe, but more than likely, he’s been chewing on some apple tree bark. Cleaned it up, checked on the wee pups. Cleaned up more poop. These puppies poop, pee, and fart more than any other pups we’ve had, giving our grandkids even more excuses to use their favorite words. The pups also get baths every evening because they’re recovering from mange.

I’m late getting a Hanukkah card and gift to my best friend. I wonder if the Jewish people were feeling like celebrating after their battle with the Greeks/Syrians? I mean, yes, they got their temple back, but it had been desecrated. Got to clean up and resanctify the temple. God, those Greeks desecrated all over the place. It’s going to take a week or more to get it cleaned. And nobody thought to get more oil for the lamps? It would take a miracle for it to last the whole time they were de-desecrating.

After the grandkids left yesterday, I picked up Mom and took her to the eye doctor. She told me she needs new glasses. I told her this is the retina specialist to check her macular degeneration. She said she needs to go to the other eye doctor then. I told her she saw him last month. Why didn’t she get new glasses? She knows she needs them. I waited for an hour and a half while she saw the retina specialist and I knit a whole slipper in the waiting room. Took her back home in rush hour traffic as she, repeatedly, told me she needs new glasses. Back at the apartment, she complained about the food. We should have picked up something on the way home. Something with sustenance, like a hamburger or cheeseburger or a milkshake or Reese’s peanut butter cups. I ate six Oreo cookies while I looked for my dad’s hearing aide which had gone missing.

Chris finally went without us to choose a Christmas tree. We’re not feeling very festive this year. At least, not yet. He brings the tree home and sets it up by himself. We’ll decorate another day. I feel guilty for not being in the Christmas spirit, but then, I doubt Mary and Joseph were feeling merry a week before their son was born. Joseph must have felt the pressure to get things done, to get to Bethlehem to pay taxes and take care of his wife… his wife who needed to stop every half hour or so to climb off the donkey and pee. I wonder if he was patient all the time. Mary must have been uncomfortable and cold and scared. Would everything go okay with the birth of the child? What a responsibility, bearing God’s son! And Joseph, please stop again because Mary needs to pee. Again? he says, By the time we arrive, there won’t be any place to stay.

“May cause headache” has flared up. Another wave. “May cause nausea” joins the party. I worry about her becoming dehydrated. I worry about her heart rate going up. I worry about how we’re going to find time and energy to get gifts for our kids and grandkids. I worry about whether Emma will have health insurance when Chris is eligible for Medicare and his insurance from his job ends. I worry about big things and little things and stupid things. I don’t say any of my worries out loud because I don’t want to worry Emma. I think she might be able to read my mind, though, and I think it just bored her to sleep.

Shhh! Time for me to snooze a little, too.

woof?

Oh Forks!

by Goldie

Or rather… forks… and spoons… and knives. Plastic ones. Filled two drawers, three grocery bags, and piles under the table and behind the couch. It seems my dad won’t throw away any of them and won’t let my mom throw them away, either. He let me take them because I could “use” them at home. Well, they went to recycling. Even I cringed at that because I knew many had never been used. Some, however, had obviously been used and never washed. Lots had spent time on the floor. Oh, and just to give perspective, that’s our dining room table that seats 6. The pile is about 8 inches high in the middle.

It’s interesting. Mom’s the hoarder, not Dad. This isn’t quite the same as hoarding. He’s willing to give them to anyone who can use them, he just doesn’t want to throw them away. I assured him I had made more room in case he needed to save more. Dad started giggling. He knew it was a getting older quirky behavior and he wouldn’t have denied it had I said so specifically. It’s so much easier to be patient with Dad.

I also found stacks of dishes in their cupboards which belong to the main dining room and an air conditioner, also property of the facility, in their closet. When my sister was in town, she spied a nice wall hanging and looked at Mom. “Did you do that?” she asked, “Or did you take it off the wall and bring it in here?” My sister is an activities director at a nursing home in California. She’s been around the block a few time. Mom’s jaw dropped and then, amazingly, she started laughing! Yes, she had taken it off the wall. 

What the heck?

I was tempted to give them a stern talking to. I didn’t raise them to be petty thieves, you know.

Uh.. that didn’t sound quite right. Caregiving can get confusing.

Cat's Out of the Bag

It happened very quickly. Mom found out we had emptied the storage unit and she went into a total panic.

I was out and didn’t get the phone call, so it fell on my husband to try and dodge questions, not from Mom, but from Dad. Dad has always served as the buffer between Mom and the rest of the world. My husband doesn’t make a good buffer, so when I got home, he was livid. I was supposed to call Mom immediately and tell her what I did with everything. Mom was really anxious. When he was done telling me what Dad had said, he turned to me and blurted out, “When your dad is gone, your mom is going to be a real pain to deal with.”

Okay. I’m afraid I was very tactful. I looked up at him and said, “REALLY? YOU THINK SO? TELL ME ABOUT IT.”

Nothing like a bit of sarcasm before bed.

It was 9:15 pm. I don’t call anyone after 9:00 pm. At 9:20, she called me. Why hadn’t I told her I was emptying the storage unit? Where was her stuff? She wanted to come and get it all.

I responded with the pre-recorded answer in my brain, “We can’t really worry about that now. We just need to take care of Dad.”

But.. I obviously didn’t know what it was like to want something for years and never, ever have anything nice and then, just when you finally have nice things, they’re taken away from you. (I also don’t know what it’s like to max out several credit cards by ordering clothes and other things on a daily basis.)

I know Mom, but we can’t really worry about that right now. We just need to take care of Dad.

But… she never had anything nice growing up and it took years before she was able to buy things. (And your older sisters wore fur coats, which were bought during the depression.)

I know Mom, but we really can’t worry about that right now. We just need to take care of Dad.

But…DAD’S BEING TAKEN CARE OF EVERY DAY!

Ah. She’s not the center of attention and doesn’t get everything she wants.

I know Mom, but he’s my dad and I need to take care of him.

She’s still angry with me about her stuff, but I’m glad I could be firm and not cave in or get really angry with her. I know she’s anxious because she will probably lose Dad sometime fairly soon (though I won’t take any bets – he still says he only has 20 good years left) and so she’s doubly anxious about “losing” her stuff and very impatient with Dad. It’s not going to get better for awhile, methinks.

But… she would have liked to have at least been told the storage unit was being cleaned out.

I know Mom, you’re ill, too. But sometimes standing calm and firm is the best way to take care of you. A little benign neglect goes a longer way than giving in to everything.

A Journey Through Dad's Heart

It was a wonderful privilege for my sister and I to sit in on Dad's echocardiogram this morning. An echo cardiogram is an ultrasound of the heart and is often done after someone has had a heart attack. Ever since Dad's mild heart attack on Good Friday, he's been concerned and curious about what the doctor will find. 

We sat down and watched as the technician put the leads on his chest and turned off the light to start the test. Gray, fuzzy images came on the screen. That was Dad's heart? I kept trying to understand what I was seeing. The darkness started to make me sleepy. Dad's arteries, valves, the atria, the ventricles; all were fading in out in grays, whites, blacks. Half asleep, pictures started forming from his heart images on the screen.

It was like seeing pictures in the clouds. What was that? It looked like a small gray man playing a clarinet. Funny... Dad played clarinet. A three leaf clover? An elf playing piano? A hippo eating biscuits? An exotic dancer? 

"Hey," said my sister, "was the dancer upside-down?"

Uh, yeah. I'm not sure whether to be relieved or worried that we both saw an upside-down exotic dancer in Dad's heart. We were both pretty sleepy. 

After the test, the technician was quiet for a minute and said, "Well, if he was a lot younger, the doctor would see all sorts of problems, but probably, he'll want to see your dad in a year." This was not surprising. Will he still be here in a year? I know there's a lot wrong with Dad's heart. I also know there's nothing wrong with his heart.

That's because there's a lot more to see as we take this journey through my father's heart:

such as a small sheet of paper with the names of all four of us kids and a space to mark when we came home from an evening out with friends. Theoretically, this was to make it easier for Dad to get some sleep and be assured he would know who is home. He still got up to check.. every time one of us walked in the door.

A paperback book with a $20 bill stuck inside, handed to one of us whenever we needed a little cash, with the words, "don't lose the bookmark" said quietly.

A brown paper bag containing peanut butter and butter sandwiches, which meant Dad had surprised one of us by making lunch for us.

His heart is a little sloppy now and it's getting crowded in the veins. If anyone ever grumbled about our house being sloppy or crowded, Dad would laugh and say, "you should've see the house I grew up in!"

There are stories and stories and stories - about his time in Africa, his time on board ship during World War II, about his imaginary friends, Mr. Brown and Andy, and about attempting to play his clarinet with false teeth.

And there is our mother. They've been married 62 years and he's been in love with her the whole time. Even through the most challenging time of their marriage, when side effects to her prescription drugs caused psychosis, Dad would say, "I just want to live one day longer than Mom, so I can take care of her." 

Dad and I share a few things. We've both been diagnosed with Parkinson's disease. Because of this, we've been able to have our DNA testing done through 23 and Me. I perused our reports to see what we have in common and found: we share 49.9% of our DNA, we both consume a lot of caffeine, we're both light sleepers (hmm), we both have dark eyes and detached earlobes, and we both have straight dark hair.

It doesn't say anything about our hearts, but regardless of how it's working now, I hope I inherited a heart like his; even if it comes with an upside-down exotic dancer, clarinet playing guy, hippo, piano, and three leaf clover.

Oh Hail

A lot has been happening lately.

Along with the challenge of getting Dad to his appointments, we also ran out of funds to keep renting their storage unit. During a moment of impulse (meaning – I didn’t ask permission of my sibs or my parents), my husband and I decided to clear everything out and close the account. The money was coming out of our bank account and, at this point, we were not being paid back by anyone. It’s time. The stuff has sat in there for nearly 3 years now. I’ve asked my sibs what they want to keep. Everything else is going, going, going.

One dilemma – despite knowing that our mother is a hoarder and gets super anxious about any item of her stuff that goes missing, my brothers are convinced that honesty is the best policy and we need to tell Mom that we are getting rid of her stuff in storage. Am I being unreasonable when I ask them not to tell her? I don’t know, but I do know my brothers don’t have to deal with the day to day fall-out from that kind of honesty. I am more inclined to just distract Mom if she asks about the stuff in storage. When she starts on this subject, I know she’s just anxious in general. When I’ve tried to talk to her about the stuff in storage, she has always said that my brother-in-charge-of-finances will take care of it when he comes to town. He always has good intentions to take care of everything when he flies in for a few days. And it doesn’t get done.

Brother finally relented and gave me permission to sell Mom’s car, too. Mom, whenever presented with the possibility, has said not yet, she’s not ready to part with it. My brothers said no way, we cannot sell it without her consent, even if we do have POA. So the car sat in our driveway with no registration, no insurance. We tried to start it and drive it up and down the driveway when we could, but it wasn’t enough. Our son wanted to buy the car. We were prepared to help him out by getting needed repairs done. We figured it wouldn’t take too much as it only has 47,000 miles on it (1985). We didn’t figure on the radiator being rusted out from sitting too long. The coolant system is shot, there are many oil leaks, a replacement radiator could only come from a junkyard. The mechanic at our shop was really nice. He ran a pressure test on the coolant system without charging us. However, because everyone has tiptoed around Mom and wouldn’t allow the car to be sold early on, it’s now not worth fixing. It would cost several thousand $$ to get it running. 

I was incredibly grouchy about this. My husband drove me to the shop and I picked up the car, which they left running for me so we wouldn’t have to jump it again to get it home. Just as I pulled up in front of our house, it started to hail. You might have seen us on the news last night. We had golf ball to tennis ball size hail. I was stuck in Mom’s car during the storm and got so scared, I wet my pants. The windshield shattered (stayed in place, thankfully) and the inside mirror fell off. It sounded like gun shots. I was sure the hailstones were going to start coming through the roof! So, if I wasn’t convinced by the mechanic, the powers that be let me know it was time to just let go of this car for good. Our car also lost its windshield, but at least we have insurance.

I’m done. I’m not going to tiptoe around Mom and ask her permission about her stuff any more. It’s not like it’s valuable stuff or family heirlooms or anything. They have an apartment which is overfull with stuff, too (including family heirlooms). If my brothers tell her I got rid of everything, fine. We’re expected to have another storm tonight and our garage is filled with everything from the storage unit.  We cannot get the car in. They will never need or use this stuff. My sibs don’t want it.

I’m not asking anyone’s permission anymore. Come what may, it’s going. I feel sick about having the car just waste away when it could have been used. While the boxes of clothes and old furniture and dishes won’t waste away like the car, why not let someone use them? They’ll go to a group in town who work with helping homeless families and refugee families find housing.

Enough is enough.

Three Ring Circus - I mean Clinic

by Goldie

I had Dad into Innovage this morning and talked with their doctor for a long time this evening. I am more and more impressed with their doctor.

Here’s what she said –

Dad’s heart is working at 49% – borderline, but at his age, anything above 50% is considered normal. His valves are a little sticky, but not that bad considering his age and that he recently had a mild heart attack. Heart beats are regular, also unusual considering his recent heart attack. So, all in all, he’s doing very well. He’s supposed to walk more – without fatiguing. Going down to the dining room should be about right. 

Regarding his cognitive/memory scores – they dipped a lot from November to February. Not a surprise. Mostly he’s having those little memory issues like, “what doctor are we seeing today?”

Recap of our morning –

Dad – “Do I look okay without teeth?”

Me – “Yes, Dad”

Dad got his teeth back, after some confusion and not a little frustration mixed with humor. I have to find the humor here.

They have a dentist filling in at Innovage. He usually works in Loveland and is only filling in till they get a new dentist in Denver.

They got out Dad’s dentures, back from the lab, and tried to fit them in Dad’s mouth. Not a good fit at all. Looked closely at the dentures and saw there was a different name on them. So we all assumed the lab had mixed up his teeth with someone else’s. Many calls to the lab…

Dad – “Do I look okay without teeth?”

Me – “You look great, Dad!”

Meanwhile, Dad and I went to therapy – PT checked Dad’s walking. He now has a new, upgraded, heavy duty rollator walker. He walked well and the pulse-ox test afterward showed his oxygen levels were still good. OT came to tell him she would see him at their apartment soon.

Went to clinic. Got Dad’s ears cleaned out. No more wax. He’ll see the audiologist a week from tomorrow (12th). Might provide new hearing aids or new mold for the newer hearing aid.

Dad has an appt with the cardiologist next Tuesday morning. Same cardiologist he saw at Lutheran, so we’ll go to his office on 19th and Ogden.

Back to teeth…

Dad – “Do I look okay without teeth?”

Me – “Dad, you look adorable”

Lab has precautions for the possibility of getting teeth mixed up. In this case, it seems only the names were mixed up. Those WERE his teeth. Didn’t look right to me. Dad’s still got a significant overbite. Seems the folks in the dental office (who have only seen Dad twice) took Dad seriously when he said, his teeth were fine – they fit fine – they were just the way he wanted them… (Dad’s way of saying don’t mess with me). So, they had the teeth adjusted WITH THE OVERBITE. And then kept telling me that’s the way his teeth have always been and that’s the way he said he wanted them.

By this time it was 11:30. I was on the verge of a migraine and I knew I needed to pick up Mattheus from school. I didn’t deal with it. But I told Dr. Kane and she will have the dentist schedule person call me. I am going to ask for new dentures for Dad. Completely new. He can wear the overbite till the new ones come in. He’s just so happy to have his teeth back, he doesn’t care about anything else. He may even balk at getting new ones – means taking impressions. But the dentist showed me how the teeth are getting very worn down on the ones he has.  That plus the overbite fiasco, I’m going to insist on new ones.

Got back to the apartment around noon. Mom was unhappy. I ran out of the apartment. Okay, only because I needed to use the bathroom and Dad had run into theirs. When I came back, I asked Mom what was up. She said she had fallen night before last. Scooted on her butt to their bed. Told several girls what happened, they all said they’d tell the nurse to come down and check on her. No one came. Nurse (LPN) was in for a moment yesterday, didn’t look at her knee, but told her to keep it elevated as much as she can. Maybe that would help. I asked at the desk for someone to come down and look at Mom’s knee. Don’t know if it’s happened yet. I reported this to their doctor and she said she’d send a note to St. E’s asking for Mom to be evaluated after the fall and ask them to report if Mom has continued or worsening pain/swelling, etc. I’ll check in with St. E’s tomorrow and see if someone has actually checked on Mom. I will also check to see if they are walking to meals again. And remind them to CALL ME WHEN EITHER OF THEM HAVE A FALL. Technically, they are supposed to report ALL falls to their doctor, too.

Hoping tomorrow is quiet.