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.