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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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.