Thursday, May 19, 2016

Finding what is real

by Goldie

Over the last seven years, my parents have lost a lot in their lives. They’ve had to give up their house, their cars, their neighbors (though not many of the old ones were left), their routines, their mountains of stuff, and their independence. Dad is losing his hearing, Mom is slowly losing her eyesight in one eye. For Dad, the most difficult loss was the ability to go off to the grocery store, the bank, or the hardware store. For Mom, the most difficult loss was her stuff, the clothes, knickknacks, and furniture that overfilled the house for so many years.
They have been sad, angry, depressed, and ultimately, resigned. They reminded me constantly they wanted to go home.
What they have gained is starting to be apparent, too. Dad has the ability to rest now, something he could only do at home when I came over. He looks relaxed instead of tense and on edge all the time. Though they both complain about the food at the facility, Dad doesn’t have to cook anymore.
They’ve gained doctors who understand elder care. Their current doctor with Kaiser has taken Mom almost completely off the benzodiazapenes, substituting a much safer drug for anxiety in its place. Though she complains about her anxiety, she seems happier than she has in decades. She is more aware of the people around her and a little less focused on herself.
They’ve gained a community. There are activities and a shared dining room. The dining room is where they make friends and we are learning that Mom is very good at making friends. Dad says she often stays behind after lunch to chat with the other women. She urges Dad to make friends with the other men, but I don’t think he has the same need to be social at this point. Throughout his life, Dad has always enjoyed people. He loves to joke and tease, and he’s one of the most generous people I’ve ever known. He still loves to joke with the aides and off them a treat from his stash of candy and cookies.
The other day, Mom told me about a woman who had not been living there very long. She had moved in with her sister, but within weeks, her sister had become ill and passed away. Mom felt badly for this woman and said she was trying to sit with her when she could and let her talk.
Wow. I couldn’t have imagined this seven years ago. During these years, I’ve often felt guilty about my part in all they have lost. I’ve had to be the enforcer. No, you can’t take three couches to the apartment. No, I’m not buying cold medicine for you to keep in your apartment. That’s not allowed. Sorry, but no, I’m not taking you to the storage unit to pick up all your stuff.
Now I wonder.. could it be that in giving up all these things that were so important to them, they have found a new freedom? Maybe what we are seeing now is who they really are — without all the stuff (though there’s plenty of stuff still there), without the drugs, without all the familiar routine.
Now when they talk about going home, they mean their apartment.

Care Jam

by Goldie

All the paths converged yesterday, bringing all my caregiving tasks together in one needy and very untidy household.
5:30 am – got up. Emma had had the night shift with the puppies. My “mom” radar had been overactive all night and I finally decided to get up and help with the early morning feeding, already in progress. Puppies have been constipated from the formula so we had tried adding corn syrup and olive oil, then some goat’s milk. Fingers crossed.
6:30 am – Cleaned all the feeding syringes and nipples.
7:00 am – Chris got up. The grandkids are due to arrive at 9:00 or 9:30. It’s our usual Friday.
7:45 am – Another feeding already? Three hours goes by quickly. Rubbing tummies to stimulate them to pee and poop.
8:00 am – Grandkids are here.  Early. Their mom was sick all night, so our son got them all up, fed, dressed, and dropped them off on his way to school. There had been no time to call with the change of plans.
8:00 am – Grandma came out of the puppy room with a loud yip, “HE’S POOPING!”
8:00 am – Our son and grandkids gave me one of those “oh, Grandma” looks.
8:10 am – Son left. Grandkids started fighting. A hard morning for their parents had made them grumpy. Great Grampa (my dad) called and said, “I think Mom would like to get out shopping today”, which meant, “She driving me nuts. Please take her away for awhile.” I gave my excuses to my dad. Then whispered loudly to Chris, “We need a baking project!” He agreed to read a story while I figured out what we were going to do.
8:20 am – Chris was on the couch reading to Opal and Lucien. The oldest, Mattheus, was in with Emma and the puppies. I peeked in to see Mattheus lying on the futon with a puppy curled up next to him. His smile was pure magic.
9:30 am – Kids were fighting again. I told them we were going outside for a walk. Shoes on, we went down to the park near the Senior Center and played on exercise equipment meant for seniors. We ate our snack and I sent a text message to Chris with a grocery list: chocolate, cooking oil, whiskey. He texted back, yep!
11:00 am – We came back home and made the dough for doughnuts. Lucien stirred and told us how he was going to have his own restaurant when he’s older and the sign on it would say BACON. After all this, they played quietly together while I cleaned up and prepared their lunch. Opal said, “I’m three. Now I can have bacon.”
11:30 am – Ate lunch
12:30 pm – The nurse at Mom and Dad’s facility called to ask where Dad’s painkillers were. She had reminded me to bring them and they were all out. I sent Chris.
12:30 pm – Kids resting. Opal was in the puppy room and I was feeding a puppy. She fell asleep while she watched. I finished feeding the pups and washed their feeding stuff. Took an hour.
1:30 pm – Six year olds don’t take naps. Mattheus helped roll out the doughnut dough and cut doughnuts. I don’t have a doughnut cutter, so they came out kind of funny looking. Finished at 2:30 then Mattheus drew pictures in the flour on the table.
3:15 pm – Kids up from rests, ate donuts, and asked Grandpa to read them a story. Emma did the puppy feeding.
3:40 pm – Kids started fighting again. Grandpa gave me a look that said clearly, Do something now before WWIII starts in our living room.
On with the coats and shoes and outside in time to see Mama drive up. She brought us flowers.
5:30 pm – Pot pies for dinner.
6:30 pm – Feed puppies
7:00 pm – Decide not to run errands tonight.
It was snowing. Still is on Saturday evening and it’s not supposed to let up until sometime tomorrow afternoon. Springtime in Colorado.
Despite the extra work, I was grateful for those wee puppies. They were there when one of the kids needed some unconditional licking and loving.
I’m on night duty again tonight.

More Caregiving? I must be crazy.

by Goldie

My plate is full. I know that. I take care of my parents and grandkids. I’m on call for both generations because of their needs and medical issues. I have my own health challenges with my Parkinson’s. Sometimes I don’t have the energy to keep up with housework.
So why, oh why did I agree to… no, I take that back, I didn’t just agree to, I volunteered to foster four newborn abandoned chihuahua puppies. This means bottle feeding every two to three hours round the clock. This means stimulating them to pee and poop. This means watching them closely as they root around and try to find a nipple to suck on and, since there is no mom, the closest thing they emmapuppiesfind is their brother’s penis. They are all boys.
As usual, I jumped in feet first with both eyes closed. Of course, if one stopped to think about the consequences of taking on any caregiving job, would we do it or think we’d be crazy to agree to it.
I dozed off for a few minutes last night with a puppy curled up under my chin. Not for long. As soon as the last puppy is fed and washed, it’s almost time to start over again. As I got up to make some formula and detach a puppy from his brother’s private parts before permanent damage is done, I reminded myself this is just a two week commitment. Others will take their turns, too.
Still… I must be crazy.
Looking down at this little 5.3 ounce fistful of puppy guzzling his midnight snack with a milk mustache, I knew why I did it. I was charmed, completely and totally under their spell. Sometimes giving up a little time and sleep is worth it.
And my lovely daughter is helping, too.... as is our granddaughter!

From Caregiver to Caree in just a few hours

by Goldie

Yesterday, I ran errands for my parents all morning. I picked up their prescriptions at Kaiser, over the counter meds at another store, made phone calls, delivered all their meds to the nurse at their facility, and visited with my folks for awhile. I knew I was on the edge because my Parkinson’s meds hadn’t been working well for me for a couple of days and I had woken up with a bit of a headache. But, the medicines needed to be picked up and delivered.
By the time I got home at 2 p.m., my head was pounding and I was a little queasy. So, no lunch for me. I made some chamomile tea and sipped it. It just made me more queasy. I went to bed but couldn’t get comfortable. There was no way I could take my Parkinson’s meds when I was having to trot back and forth between bathroom and bedroom all day. About 5 p.m., my dystonia took over and by 8, the pain of the headache and queasiness combined with total body dystonia was more than I could handle. We were off to the ER. By the time we got there, my arms were twisted and pinned to my chest with muscle spasms and my legs were twisted and crossed and my feet were curled up with painful cramping. I was hyperventilating and dehydrated and in full dystonic storm. It took two men to pick me up and put me on the bed.
Long story, much shortened (8 hours in ER), I was pumped full of various drugs, the combination of which caused me to suddenly have severe restless, jumpy legs. More drugs. Finally started to settle down and we got home at 3:30 a.m. By then I could walk, though I was very shaky and dizzy from the meds and from my involuntary triathlon — headache, diarrhea, and dystonia. At least I got a fairly decent involuntary abs workout.
I’m still shaky today and so, so grateful for my husband, who put on his caregiver hat and took care of me all night.
As a funny side note, the medical report must have been transcribed by some automatic voice to text program. It told me to “follow up with irregular doctor injured neurologist”. It took me a few minutes to figure out what it meant!

More Shopping and a Fly-by

by Goldie

Okay, you’ve heard my stories about shopping with my parents, but this one was priceless. Sort of. I felt awful about it when I got home because they spent wa-a-a-y too much money. They are spending down again after being on Medicaid, then selling their house, and now they have about eight months before they run out of money again. We (my brother and I) are gathering all the paperwork for Medicaid now.
I know better. Both my parents are compulsive shoppers — in different ways.
It was one of those beautiful winter days we get in Colorado, 70 degrees and sunny. Dad called. They wanted to go shopping. Okey-dokey. Well, so much for my plans. Okay, I didn’t have plans because I know better, but maybe I could have had plans. But I digress. Dad wanted to go to the grocery store and Mom wanted to go to Walgreens. I was prepared. We brought the wheelchair for Mom and my mobility scooter for Dad. Neither of them can walk far.
First stop: Walgreens. Dad decided he didn’t need the scooter in a small store and he would be just fine pushing the cart. Got Mom in the wheelchair and with Dad hanging on to my arm, we went in at a snail’s pace. Mom wanted to go faster. Inside the store, she immediately spied the make-up section with a friendly clerk right there to suggest various sale products. I had to stick with her because she can’t push the chair herself.
Dad asked the clerk where the candy aisle was and took off by himself. My dad. Unsupervised in the candy aisle. God knows what could happen. It’s amazing how much faster he can walk when he’s heading to the candy aisle. I tried to watch out for him…and, obviously my attention was not on my Mom and her make-up…except when she asked me my opinion. I told her that I came of age in the 70’s when one didn’t have to wear make-up. I know nothing about it. She said she only needed help with colors. She can’t see well at all. I couldn’t really tell the difference between them but I did my best. She chose fingernail polish that she could see. I suspect she could be seen in the dark with the fluorescent colors she bought.
And where was Dad? He was talking to another clerk, asking for directions. Forty minutes later, we got to the check-out counter and Dad kept taking out bag after bag of candy and chocolates. I asked if he really needed all that. He responded with a firm “YES”, then turned his face and started giggling. Mom had her make-up and, well, having never bought it, I had no idea how expensive it could be. She obviously didn’t trust that I would bring her back so she loaded up.
Over $230 worth of candy and make-up. And we hadn’t even gone to the grocery store.
I emailed my brother as soon as I got home. He handles their finances long distance because he offered to do it and he’s the only one in our family who actually has money. I apologized for not being able to put the brakes on their spree. He generously said it was okay. They should splurge now and then. (For our budget, that was almost a month’s worth of groceries.)
My brother is coming to town in April. Mom is thrilled because she thinks he’ll take her shopping and take her to the storage unit. As much as I appreciate all that my sibs do for me, I know this will be a fly by. He’ll be in town for a day or two. He’ll spend a few hours with Mom and Dad. He’ll suggest I get them out more. Then he’ll fly back home and to his high paid job that takes him to southern France, China, and Denmark.
I was feeling a bit stressed by the time I got them home and found places to put all the food. Mom wouldn’t let me touch her make-up. I cleaned the rotten food out of the fridge, did their dishes, rearranged a few things… then a lot of things… then squashed bags of candy in the drawers and cabinets. Dad gave me one of the giant Hershey bars he had bought.
I ate the whole damn thing before I got home.

Grandma Duty - My other caregiver hat

by Goldie

I’ve been away for awhile. Our son and daughter-in-law went on a holiday and asked us to help out with the kids. No worry, they said, we’d have help. Nanna would spend the nights with them and they had a couple of other friends who could give us a break if need be. As Grampa tends to have limited stamina and patience for little ones, I was on caregiver duty again…a different kind of caregiving, but just as tiring!
Here’s the journal:
Two days into the holiday:IMG1949
A number of us are taking shifts looking after the children. Mostly, during the day, they’ve been with me. The conversations remind me of my days in the kindergarten — everyone talks at once:
“Lucien and I like jelly on our bread, but Opal likes butter. Unless you have cream cheese.” “Gamma, will you read me this story right now” “Don’t forget to make sure Felix comes in for the night” “I HAD THE FIRE ENGINE FIRST” “Can we watch Curious George tonight?” “When’s Mama and Papa gonna call on the computer?” “Is there noodles in the soup? I only like soup if there’s noodles in it.” “I got more soup all by myself” “Grandma, look what Opal’s doing. She’s not allowed to do that.” “Now will you read me a story?” “I get the first bath!” “No, Lucien, you can’t come in. This is my bath. But you can sit here and dabble your toes in the water.” “STOP PUTTING YOUR FEET ON ME!” “I wanna go to bed.” “Tucktucktucktucktuck me in!” “Read the story about the bear’s birthday suit” “And the mermaid” “I not going to sleep there. I not Opal. I’m a birdie. I’m making my nest” “I got you Gamma. I’m not gonna let go and you are gonna have to stay here. I want you to stay here forever.”
Two more days to go. I’m so glad John and Coco could get away by themselves. I’ll be exhausted by Friday but that’s okay. I wouldn’t miss this for anything!
“Grandma, I have another story to tell you.”
Day three with the grandkids:
Mattheus has a slight fever. Lucien has a higher fever. Opal was beeboppin’ around the house with the combined energy of all three.
Time to remember all those Mom things from years ago. How high can a fever go before I need to be concerned? How do I keep the kids quiet and resting? How do I prevent Opal from dancing into Mattheus’ carefully placed fire engine with its many small tools? And Mattheus from describing in gory detail what he was going to do if she knocked it over again?
Breathe.
Lucien got up and ate a little at dinner. He’s drinking enough. I don’t need to worry too much. Mattheus only ate applesauce and Opal cleaned her plate and had seconds. After dinner I saw the noble knight in our 6-year-old Mattheus as he gently made a place for Lucien to lie down on the couch and covered him with the blanket, then went in with Opal to brush teeth and get ready for bed. I was too tired to look for a book so I pulled something out from the dusty files in the brain and told them the story of the little fox who stole the old woman’s loaf of bread.
When they settled and their Nanna came to stay for the night, I did dishes and picked up toys. It was nice to be able to do something I was sure of.
Opal’s godmother stayed with them most of today! I’ll be at the house again early in the morning and will stay until their Mama and Papa arrive home around dinner time. Then I’ll be off duty and back to being just Gramma.
Last day:
The kids got back from their holiday last evening and Lucien was gracious enough to greet them and wait a whole five minutes before throwing up.
I was pretty beat last night and didn’t do much of anything. Emma made me a grilled cheese sandwich for dinner and afterward, I took a hot bath.
I learned a lot this week:
I can keep three small children busy without turning on the TV.
I can still remember a few kindergarten stories to tell by heart.
I can go long stretches without bathroom breaks.
It’s possible to take care of the grandkids for most of four days and not crash afterward.
I also learned that one of the scariest things to hear from an active grandchild, when I’m sitting in a chair, is “Close your eyes Gramma!” I tried to peek out of one eye, but was caught. “CLOSE YOUR EYES, GRAMMA!” I knew what would happen. Any second now she would land on me with her full weight with one arm or one knee on a most sensitive spot on my body. Breasts are not hard to miss and probably looked upon as a soft place to land.
And I learned that I’d do this again anytime. Not the chair thing, but being with the grandkids for an extended time.

A Way In

by Goldie

It’s been a long couple of weeks. I’m not so fond of being a caregiver right now, but I’m even less fond of suddenly turning into a caree. I’m slowly getting back into my usual routine after really crashing. Part of this is my Parkinson’s, but usually I have the stamina to get things done. Today, a short trip to the thrift store was almost too much.
A week ago, I crashed hard with a severe headache that made me very sensitive to light and very queasy, dystonia (where I twist up and cramp and look like someone who lost in Twister), and dyskinesias (involuntary muscle movements). The dyskinesias lasted almost two hours. My husband came and sat with me, rubbing my back and reminding me it would go away eventually. In the back of my mind, I kept thinking, just take me to the ER and let them give me some morphine, but I knew that wasn’t a good idea.
I’ll go in to the doc on Tuesday and see if she’s got any thoughts. Me? I think I might have a kidney stone. I could be wrong.
The only thing I managed to do as caregiver was to pick up mom and dad’s meds from the pharmacy and deliver them to the nurses at the facility. I cleaned a bit in their apartment, but that was the day I really crashed, so I paid for  it.
Now, whining is over. I’ll be fine. What I’ve been thinking about a lot is how to go forward and find a way to actually interact with my mom that’s not a doctor’s visit or cleaning house or watching HGTV with them. Mom doesn’t really do anything. I don’t think she is cognitively capable, though she sounds really together. She wants to chat. I don’t want to chat. I don’t know what to chat about with her. I need to have a plan – a chat plan?
I’m going through photos again and thinking about all the moves we made across counhouse in Billings Terri, Tom, Ann Schaffer 001try. Dad was transferred a lot and, well, some of the companies he worked for went out of business. We lived in Oklahoma, Nebraska, Colorado, Montana, and Wyoming. I’ve been trying to match photos of houses to where we lived (most of our moves were before I was 7) with only moderate success. I can’t take the photos over because I would never get them out of the apartment again.
I think I’ll ask about the timeline. When did we live in Billings? When did we live in Anadarko? This keeps the chatting personal, but not too personal. I hope. Maybe having a timeline will help me figure out the photos.
I’m in a lull, you see, and I know it. I want to find a way to enjoy this time when I don’t have to run them to appointments several times a week. Everything is set for the next eight months — which is when they’ll return to medicaid and have to change doctors one more time. I know a lot can happen in eight months, but I have to plan for them still being here. Things will get crazy again then, I know. We’ve been through this cycle.
Until then, I’ll rest up.

Escape

by Goldie

My parents really do get their meals at the assisted living facility. It’s all provided for them. They just have to walk down to the dining room and sit down. No cooking, no cleaning. It was one of the ways we talked them into moving. Now they don’t have to order pizza every night.
Dad called yesterday and let me know he really, REALLY needed to go to the store. They needed a lot of things. Now, Dad’s pretty together mentally, but he can get a little weird about food. It’s not just getting old thing, either. I remember cleaning the kitchen once when I was just out of high school and my parents were out of town. I found 13 jars of peanut butter, each with just a little bit left. Heaven forbid anyone would throw out good food. Heaven help me –I threw them all out or at least 12 of them.
At the store, Dad handed me a long list. The list included contraband such as Mylanta, Advil, Mucinex, Tylenol, and laxatives. Fortunately, he doesn’t remember what’s on the list and he trusts me to tell him. The list also included microwave dinners, bread, lunch meat, cereal, milk, and hamburger buns. I managed to talk him out of some of this by reminding him he already had enough cereal in the apartment to last him six months and the freezer was already full to bursting. He still managed to pack the grocery cart.
Walking down one aisle, a very short woman asked if I would reach up and get something off the shelf for her. I did and we chatted for a couple of minutes. When I turned back, Dad was gone. Even in the electric cart, I knew he couldn’t go far. I finally found him in the candy aisle. In the basket were three extra large Hershey bars, two bags of mini Hershey bars, and one bag of regular sized Hershey bars and a 3-lb. bag of Lifesavers.
He wouldn’t budge on these. My brother is coming to town for Christmas and Dad wants to make sure there’s plenty of chocolate. I put my foot down when it came to the four boxes of Cocoa Puffs cereal. For some reason, Dad is afraid they’ll run out of my brother’s favorite cereal if he doesn’t stock up. So, for a five-day visit, four boxes of cereal and three gallons of milk are needed to see them through. I also reminded him that my brother has a car and the store wouldn’t run out of food.
We also negotiated on the frozen dinners. When do they eat in the apartment? Well, Dad told me, they wouldn’t be going down for lunch today. Why, I asked, is Mom not feeling well? She’s okay, he told me, just ornery.
Suddenly I realized why we had to go shopping. They didn’t need the food. Dad needed an escape. I tend to gauge my visits with Mom by how much chocolate I eat when I get home. Knowing just what it’s like when Mom gets ornery, I think he needed all that chocolate, too.

Holiday Spirit

by Goldie

We always loved the holidays, especially those huge family gatherings at our in-laws house with 30 or more guests and my mother-in-law flitting back and forth, making sure everyone had what they needed and felt at home. When my in-laws passed, our gatherings became smaller. Some of the sibs went to their in-laws instead of dividing the time between two families. Without my mother-in-law, we weren’t inviting their neighbors and former colleagues, either. It seemed strange to have, maybe, 15 at the gathering.
My side of the family was different. For some years, everyone came back for Christmas Eve dinner but eventually, with all the sibs living in different states and our parents getting older, we had very small gatherings. My parents and brother were always invited in the gatherings my in-laws had but declined. So, we had our separate Thanksgiving dinner on another day, usually Friday or Saturday.
My husband and I are the elders for our family. We have realized this in many ways, especially since my parents have needed full-time care. We are the ones who are called when someone is sick. We were called when our niece’s house was broken into. We are the go-to-for-advice-elders whenever we are needed. Being the elders, we’ve also realized that our favorite music isn’t cool anymore, and I would never, ever think of buying clothes for our daughter unless I’m prepared for an awkwardly polite thank you and a request for the receipt. Baby boomers aren’t used to this.
IMG1788Anyway, though I generally enjoy this honor and enjoy hosting the gatherings (can I channel my mother-in-law’s energy?), I was tired this year and not looking forward to the work of cooking and cleaning for the group. So, the brilliant person I am thought we’d just have our side of the family join the great grands at their assisted living facility and eat in the dining room. Perfect! We’re all together and no work.
Dad was worried about the cost. Knowing he would fret and fret about it, I finally told my brother I would just make dinner and bring it up there. We could ask to use some space in the dining room. Okay, besides the fact that NOT cooking was the whole point of going there, the next challenge was space. All the guest dining rooms had been reserved long ago. I finally gave up and told them just to come to our house.
Everyone who is here will be coming. My brother, who always comes to town, and all our kids and grandkids. Total: 12 people for dinner. I went into a frumpy panic (the kind you have when you’re too tired and irritated to panic fully) for a couple of hours. Then my daughter and I made pumpkin pies from scratch.
Hallelujah! I’d forgotten how much homemade pies are a part of our holiday tradition. Now, I’m dancing around (okay, frumpy dancing) and getting the last minute things ready. The family will arrive in two hours.
Today I am thankful for my brother, who comes out when he can and when he does, takes Mom and Dad out shopping, brings them to the family gathering, and even took my mom to the storage unit so she can get her stuff (okay, mixed feelings about that one). I am grateful for family gatherings and holidays that seem to pop up when we least expect them. I’m even grateful to the chaotic mess that is our house the day after the holiday.
And oddly enough, I’m grateful we don’t have a dishwasher. This means me and hubby get some good long quality time together. 
(since this was written, we have gotten a dishwasher. We'll have to find quality time another way.)

Crime Wave

by Goldie

I’m getting suspicious.
Lately, every time I visit my parents at their assisted living apartment, I find something stashed away. Contraband medication, like Advil, Mucinex, or Pepto-bismol, are hidden under couch cushions. An electric heating pad, obviously new, is stuffed in the corner of the closet. Mom and Dad know they are not supposed to keep medicines in their room and they know heating pads are not allowed. It doesn’t surprise me that they would want to have this hidden stash, but the obvious question remains unanswered.
Where did they get these things?
I take them shopping. Okay, sometimes Dad will discreetly (sneakily) put something in the cart when I’m not looking. I know that and I go through the cart as we check out, discreetly (sneakily) putting things off to the side. I check again before the bags go to the apartment.
My sibs are out of state and besides, I’ve lectured them enough. They know not to send medicines. My parents mail comes to me. Before a magazine goes over, I take out all the postcards that are stuck inside. They don’t have debit or credit cards and I’ve stopped Publisher’s Clearinghouse from sending anything to them.
I’m beginning to think there must be some sort of organized smuggling racket. In fact, I’m getting veeerrrryyy suspicious. The ladies were playing… poker the other day when I came to visit. While I saw no cash, the candies were piling up pretty high in front of one woman. When the activities director came by, one of them would sweetly say, “Go fish”, and they would smile, but they weren’t fooling me.
Then I went down to my parents room. Dad was just handing some candy bars to a young woman and saying, “You won’t forget now, will you?” She smiled and left. Huh?
Dad always, always has candy, candy bars, chocolates, cookies, cakes, pies, ice cream, sweet rolls, and jolly ranchers. Every time we go to the store, he stocks up on all this. How could anyone eat that many sweets? Yet, he always seems to be running out. Where does it go?
Later, I saw the poker player hand over some of her winnings to a man with a violin case. When they saw me looking at them, they glared at me and walked down the hall. I had a strange feeling there wasn’t a violin in the case.
I came home and saw the following news report: A massive surge in crimes committed by pensioners has sparked a ‘grey crime wave’ and seen offenses committed by over 65’s rise 50% over the last 5 years. One 78-year-old man remarked, “I’m just trying to top off my pension.” A group of criminals, age 60 to 84, robbed a bank and were caught 5 hours later. They hadn’t made it out of town because they’d needed to stop several times so the elderly gentlemen could pee.  As an 86-year-old woman robbed a jewelry store, she had to ask the clerk to speak louder, then she stopped to turn up her hearing aide. She would have been caught had she not been armed with knitting needles.
Audio Player

There’s a high school across the street from the Assisted Living Facility. Sometimes the older folks go for walks. Sometimes the students come over and sit in the gazebo. I can see it now…
“Psst! Hey kid, ya got any drugs? No, not narcotics, I get enough of those…I mean like Tylenol. I got some Milky Way bars and an apple pie. Tell ya what, come back next week with Ex- Lax and I’ll have a whole bag of Snickers bars for you.”
Or maybe I’m just imagining things and all this is very innocent. But… I still have the same question:
Where do they get all this stuff?

The Good Parts Version

by Goldie

I love the story of The Princess Bride by William Goldman and I love the idea of this being the “good parts version” of his favorite story from childhood. According to Mr. Goldman, his father would tell him the story, leaving out the boring parts. He was surprised when he finally read it and found pages and pages describing clothes. So he wrote the good parts version. Actually, he wrote the whole thing, but this intro makes the story even more fun.
A friend of mine grew up with horrible abuse, then married an abusive husband. A couple of years ago, she began reviewing all those years–with a twist. She was going to remember all the good parts. She was rewriting her story into the good parts version.
Last week, I found myself in the deep hole of caregiver burnout, self pity, and anger. I was shocked at how angry I was. I didn’t like it. In some ways, I’ve come to terms with the fact that I’ll always struggle with my relationship with my mom, but I don’t want to be like her. She has been angry all her life. Even her humor often tends to be mean spirited. Remembering this is enough to shake me out of my self pity and back to living well.
I’ll go back to writing the good parts version. If my friend can do it, so can I. As long as I know I have a place here to vent when I need to, where no one will pat my hand and say, “now, now”, I can do this.
The best thing is I’ve already started. In fact, I start the story way, way back, before me… way before me. I’m still going through those family photos and genealogy records. And I’ve found some really fun stuff:
Names of twins:  Hiram and Homer, AKA Hi and Ho, Lillie Bell and Tillie Bell, Lois and Louis, Lucretia and Aurella, Spythnev and Wenceslas.

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My dad, my sister, and me. I’m the little one.

We have some Welsh ancestors. So I can ffind myselff spellling words ffynnu and be ffine widd ddis.
If I’m really zoning out and keep clicking on those little arrows on our familysearch.org family tree, I always find we are direct descendants of royalty. Sure, there’s a few data problems. Maybe a wife was born after her husband died, but really, it’s got to be accurate. I followed those arrows back so far one night, I came to Odin of Asgaard.  And Beowulf.
More importantly, I’m trying to consciously remember the good times. At least Mom ignored us, and we had a blast wandering through the hills and catching horny toads. I hardly remember any adults from the neighborhood, just lots of kids and the occasional jack rabbit. We had cousins on a farm and an uncle who took us to get snow cones and cotton candy.

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Me and my Uncle Bob
Focusing on these times, maybe I can enjoy going through some of the old photos with Mom and Dad… well, I always enjoy Dad. He’s the one who taught me how to make things funny. I have to let go of a lot to enjoy Mom. Sometimes it’s easier to hold on my own anger rather than risk the hurt that comes when she gets mean.
Oh well, that’s a work in progress. For now, I’ll go through my photos and rewrite the good parts version, starting way back in our history.
Guess what? I’m a direct descendant of Attila the Hun!
And I’ve also got some really cool guys in my family.

No, I'm not doing a great job!

by Goldie

It’s been a challenging week:
Monday – took Mom to get her new dentures, then went out to lunch with a woman who was recently diagnosed with Parkinson’s and needed to talk to someone who was dealing with the same thing and understood. I offered to do this for a friend because I know how hard it can be to adjust to this chronic health challenge.
Tuesday – Dad called, said Mom needed to get out. Could I take them shopping? Picked them up, forgetting I had the grandkids’ car seats in the car. Squashed one walker, one carseat and my dad in the back seat, one car seat and one walker in the trunk, and Mom in the passenger seat. Got to the store and just as we walked in, Mom decided she was too tired and wanted to wait in the car. So, settled Dad into an electric cart and walked Mom back to the car. Dad was anxious about her the whole time.
Wednesday – went to Comcast to try and sort out their accounts. Then babysat for the grandkids for three hours while their parents were at parent/teacher conferences. Sent an email out to my brothers to let them know how many $$$ it was going to take to reinstate the internet services for Mom and Dad.  Don’t think it’s worth it. I’ll admit I wasn’t incredibly positive about Mom in the note. I was tired and crabby.
Thursday – I was glassy eyed and couldn’t focus to do anything. My stamina is not at all good. Got emails back from my brothers. One brother mentioned how proud he is of Mom and how well she’s done. Also told me what a great job I am doing. I took it wrong and felt I was being patiently scolded for being negative. This has happened before. I emailed back saying I knew Mom was doing better there and didn’t really need to be reminded of this and I’d rather he listen when I get frustrated than remind me to be positive.
Friday – We had the grandkids all day. We do this every week. It’s our way to be proactive and help our son and daughter-in-law. We love having them, but they are exhausting. The kids left at 4:30 and I walked back into the house and sat down. The phone rang almost immediately. The head nurse at the facility had just called for an ambulance to take Mom in to get checked. She was complaining of numbness on one side of her face and down her left arm. I took off. Got to the facility at the same time as the ambulance. Mom didn’t want to go anywhere, didn’t feel it was necessary. Vitals were fine, neuro test was fine, she was talking fine. Nurse said she should be checked. Paramedics said she should be checked. Mom said no. They looked at me. You’re the POA? Yeah. It’s your call. I didn’t say what I was thinking.
We went. It was actually the nice looking paramedic who sweet talked her into it. Dad and I followed the ambulance to the hospital. ER doc examined her and said she was in great shape. Suggested it might be the new dentures causing problems. Got back to the facility by 8 p.m. Made them dinner. Talked to the woman who had alerted the nurse. She had come to give them their meds and had found Mom holding her face, looking like she was in pain, and got worried and got the head nurse who asked questions and had Mom walk a little. Mom was listing to one side – normal for her when she first gets up, had no one noticed before?  I went home, had chocolate chip cookies for dinner, and crashed.
Yesterday, I was in bed all day. When I overdo it with my Parkinson’s, I get exhausted to where my heart rate gets a little screwy, I’m shaky, my dystonia kicks in and makes my face and neck stiff and is very painful, and I get a horrific headache. I also get nauseated. I didn’t get up till this morning. I’m better now, just very shaky. I talked with my brother over the phone and felt badly I had said what I did in the email. His response to me was perfect. He asked how I was doing.
I am not doing a great job. I don’t get them out to go shopping often or do other nice social fun things. I do the absolute minimum I can get away with. I don’t have the energy or desire to do more. I resent the waste–food bought and never used, money wasted on internet services Mom insists on but can’t access without me right there, money spent on a storage unit to store the stuff they’ll never need. I resent that she glares at me and Dad when Dad pays me back for something he asked me to buy for them, and she makes sure it’s not one penny more than I am owed.
Right now, I’m finding it hard to do anything else besides what I absolutely have to do. It’s a full time job that I didn’t apply for and can’t resign from. Six years so far and no end in sight. I was horrified when the doc said Mom was in such good shape. Then felt guilty, of course. Her mom lived into her 90’s. She’s 86 now.
I’ll find my sense of humor again.
Some of these things will have to go out to the compost bin with the rest of the manure, and age for awhile before something positive can grow from it. Right now, it just burns.

Could be worse

by Goldie

Do you have times when you’re trying to solve a problem and you know it’s going to take a few emails and phone calls, and you’re dreading it, but wanting to get it solved because it’s a stupid little glitch and you’re just not up for it? And then, just when you’ve convinced yourself you’re making too much of it, suddenly you find out it’s not a little glitch, it’s an all hell broke loose kind of thing?
For some reason, whenever this happens, I get very calm. Little things I can be expected to fix. Big things, well… Sometimes I can, sometimes I just stand and smile and blink.
When I visited my parents last Sunday, Dad was writing out his check to Comcast for their internet service. I glanced and asked why he was paying Comcast $270.00? Sheepishly, he told me he had missed a couple of payments and, for some reason, the last payment was returned from the bank unpaid. He didn’t know what was going on, but he was going to pay in advance. I suggested maybe we ought to find out what’s up first. Mom kept saying he should just let her handle the checkbook. I was grateful Dad had lost a hearing aid.
I called Comcast. The recording said they were behind on their payment and their internet service had been cut off. Person (real human being person) couldn’t tell me anything because I wasn’t Dad. Told person I had power of attorney and could email a copy to them. Couldn’t do it, he said. I’d have to go to the local office.
Cruds. Couldn’t find the POA paper. Figured out I’d given my last copy to Kaiser. Went back to the assisted living facility with a new crisp copy for Dad to sign. He signed (much to Mom’s chagrin) and Sr. In Charge of Finances notarized it for us. Dad shook his head and told me he was feeling his age and going balmy. He’d always handled the finances and never missed a payment.
I decided to go to the bank first and then to Comcast. Made sense. I was armed with a new hot off the press POA and Dad’s request for the balance of their two checking accounts. Banker told me nicely that one acct was fine, the other was $1800 in the hole. Dad obviously had tried to pay Comcast with this account. But… What was up?? This account should have been fine, too. No way could they be in the hole.
I call Big Brother Who Handles Finances. Seems the facility overcharged my parents by about three times the amount they were supposed to deduct. Big Brother will handle it and I got to tell Dad he wasn’t balmy after all.
Today, going to the eye doctor, it was raining and Mom had a cold. I figured she would cancel, but she didn’t. She did insist on Dad coming along, which meant fitting two large walkers in my trunk and jumping up and down trying to get the trunk to close. We picked up my daughter with her suitcase and bags of groceries and stuffed them all in. She is house sitting at our niece’s house. Niece’s husband left early this morning to join his wife in San Francisco. 
Dropped daughter off at the house and drove the 15 miles to the eye doctor. Got there and realized Mom had forgotten her glasses and had lost her bottom dentures. Really. How do you lose teeth? All was okay, though, because she was just there for her macular degeneration check and injections. Started into the clinic and Mom started coughing. “Oh no,” she said, “I just wet my pants.”
Dad smiled sweetly, knowing a response was expected but without the benefit of a hearing aid said, “That’s just fine, dear.”
I just smiled, blinked, and didn’t say anything.

Rough Landing

by Goldie

Back home again. It’s always nice to get away and I always hope I’ll return refreshed and ready to meet my caregiving duties with joy–okay, not to get carried away here, at least a better attitude.
I landed with a thud this time, getting a call from Mom saying Dad was sick and needed medicine and the nurses wouldn’t give him anything. They didn’t have orders for Musinex, so I made the calls. The nurse called back from Kaiser, having already talked to the nurse at the facility, to say Dad already had an order for Guaifinisen, rather than Mucinex and that Dad should have, by now, been given a dose. The nurse at the facility had assured her that Dad’s lungs were clear and he wasn’t in any distress.
I went over anyway and visited for a little while, watching to see how Dad was doing. He was looking very tired, but that was not unusual. The cough is chronic, but flairs up worse from time to time. Otherwise, he was still asking about everyone and telling jokes. Mom complained again that Dad had not been given any medicine. I suggested they insist on it before bed. Back home I went, finally, and arrived to a phone message from the facility. They didn’t have any guaifinisen and would I bring some? …Of course. I’m afraid I was a wee bit grumbly on the phone. Back I went.
**
We’ve had an ongoing battle with stuff, as you all know. Among all the boxes of clothes, knickknacks, furniture, books, and other odds and ends, is my mother’s car: a 1987 Buick Skyhawk with less than 50,000 miles. It has been parked in our driveway for the last year. No insurance, no registration. Mom hasn’t been able to drive for the last five years and Dad made the decision to stop driving once they moved to assisted living. He knew it was time and wanted to make the decision himself.
When our son and daughter-in-law’s car died completely, my brother offered to pay full market price for the Buick and give it to our son. This was his way of thanking me for being the caregiver. (Yeah, I know I’m lucky.) Mom wouldn’t have anything to do with it. Didn’t matter if they couldn’t use it. She told me lots of people needed cars and didn’t have them and offered to give my son two large stuffed animals instead. (These came from a yard sale about 25 years ago and were leaking plastic pellets all over the place. We had trashed them long ago.) My brother wouldn’t do anything without Mom’s consent.
I was less angry about the car than just about how thoughtless and mean my mother can be.
**
Now, just as I get back from my second trip to the facility in one afternoon and am done with all the phone calls and errands, I find out Mom is planning on selling her car to one of the aides at the facility–a nice Ethiopian woman. The aide is lovely and I really, really like her. She’s good to Mom and Mom likes her, partly because she is Ethiopian. This is the only reason I mention the woman’s ethnic background. I hold absolutely no anger towards this aide and I actually hope she can buy the car.
But this has triggered more anger than I expected. Again, it’s not the car, it’s the thoughtlessness toward her family. This brought back memories of when Mom would go to all sorts of activities with the refugee families and not show up for her grandchildren’s school plays, of the time my brother came to town on business and Dad invited us over, only to have Mom uninvite us 10 minutes later and lie to us, saying my brother wasn’t coming after all, of the years when Dad had to shower down in the basement (even at 90) and keep his clothes in the basement because there wasn’t room upstairs with Mom’s three rooms filled with clothes and Mom didn’t want him using HER bathroom.
I’m still exhausted. Going to the PCORI meeting energized me in a good way and was great for keeping my brain active and I met some wonderful people. I’m still exhausted emotionally and physically.
I know I need to just express the anger and then let go of it.. and I will. I just have to take a deep breath and be patient with myself, too. There’s no guarantee my anger won’t be triggered by this again. I can’t pretend these things are not part of my life. Deep breath and let go–over and over.
I can almost do it without hyperventilating!

Good Timing

by Goldie

Timing is everything, so they say. I’m not sure exactly who they are, but in this case I’ll give them credit. Timing is important. It’s the difference between a gourmet dinner and something we feed to the chickens. Good timing was getting to the bank to refinance our mortgage on the day the interest rates hit their lowest. Bad timing was arriving in Chicago at the same time as a major flood.
Not great timing was applying for a scholarship the day before the due date to an almost full conference when the scholarships were first come, first served. I had seen the emails about the annual meeting for PCORI (Patient Centered Outcomes Research Institute) and hadn’t even considered going. I couldn’t afford it. I didn’t open up the specific info and didn’t see the scholarships until it was almost too late. I applied anyway, just because.
The day of the scholarship announcement came and I heard nothing from PCORI. I did receive a phone call, however. It was my sister letting us know that her 27-year-old daughter, Jenny, had been diagnosed with a rare cancer, a high grade sarcoma. My niece is very close to us geographically and in our hearts and with her parents in California. I knew we needed to be present for her and make sure she had the support she needed. I was glad I hadn’t heard from PCORI at that point.
Things moved very quickly after Jenny’s diagnosis. I took care of her 16-month-daughter while Jenny had a PET scan and MRA. After taking everything into consideration, they decided they would go to the Sarcoma Center at UCSF for treatment. She and her husband had already decided they wanted to move back to California. Jenny wanted to be close to her family. They went back last Thursday and had their first appt at the Sarcoma Center on Friday.
The good news is the doctors were very positive. The cancer has not spread and they are confident it can be treated. More good timing. Jenny and her daughter will stay there and her husband will come back to Colorado to work on getting his job transferred to California.
Two hours after I received this good news, I got an email confirming my hotel room for the annual meeting in Virginia. Nothing else, just the confirmation from the hotel. I made a few calls and waited. And waited. Last evening, I finally emailed my mentor and said I was assuming I wasn’t going anywhere so maybe I should just cancel the hotel.
Ten minutes later, she wrote back and another email came with the rest of the details. Yes, I had indeed received a scholarship and they would make arrangements for me to come. I sat and stared at the screen in shock while the puppy we are watching calmly chewed a hole in my second best shirt–while I was wearing it. I kept staring wide-eyed, mostly because with all the to do, I had forgotten my meds and wasn’t blinking. Timing again.
I freaked out for approximately ten minutes. I can freak out quickly if I need to. I felt badly I would miss seeing my brother and sister-in-law who are in town–BUT–now I know there’s someone here in case there’s an emergency with our parents. I was sorry to miss my daughter-in-law’s father, who is also visiting–BUT–he will be helping out with the grandchildren. If there was ever a time when I could get away, this was it.
Chris encouraged me to go. He knows I enjoy travel and enjoy working with PCORI. I’ll learn a lot and meet a lot of people. And I’ll probably come back exhausted. If the scholarship notice had arrived on time, I would have declined. The timing wasn’t right until I knew Jenny and her family were settled.
Chris, meanwhile, will have a nice quiet week, mostly to himself as Emma is back in classes during the day.
Good timing.

Wednesday, May 18, 2016

"Now, I don't want to alarm you, but..."

by Goldie

I'm sure those words were meant to keep me calm. I hadn't started to panic because I really wasn't sure what to panic about, but I'll have to admit, those words had caused a small alarm to go off in my brain, even if it was just because I didn't know what he was going to say next, and especially since, HE was a police dispatcher at the other end of the phone line.

The day started off with such promise, really it did. My friend, Marie, had offered to help me pack up things at my parent's house and I was looking forward to the company. We stopped at Starbucks to fuel up for the job ahead and got a couple of sweet rolls, just in case we needed something to sustain us through the morning.

My goal today was to get most of the kitchen packed up, find some of the items my parents needed at their new apartment, and take the old rifle bullets we found in my dad's office down to the city police station. No problem. 

Until we found the tear gas in the back of the kitchen drawer.

I didn't know what a tear gas container looks like and I wouldn't have known what this was, had it not been for the paper wrapped around the canister and labeled with my dad's handwriting: "Caution, military tear gas". Actually, the writing looked nothing like that because it was my dad's handwriting and almost illegible, but I've had lots of practice reading his grocery lists in the last six months and I figured it out quickly.

My only goal at this point was to get rid of it as safely and as quickly as possible. I put it in the box with the old rifle bullets and we drove down to the local constabulary. Somehow I assumed I could just walk in, hand it to someone, and walk out. I was wrong. 

"You'll need to call the dispatcher." The woman behind the glass pointed to a black phone on the opposite wall, "They'll send an officer to pick it up."

I did as I was told and told the dispatcher what I needed. A moment of silence. 

"So, you have this in your car?"

"No, I have it with me."

"You.. have it with you... in the building?"

"Yes," I said firmly. 

That's when he said, "Now, I don't wish to alarm you, but...(long dramatic pause)... you need to go outside and wait by your car. An officer will meet you there." He went on to explain to me about how tear gas can become unstable and he didn't want to chance having it go off in the lobby of the police station. He also took my name and asked where I was parked.

So I went back out and explained the situation to Marie. She was supportive. 

"I figured if you weren't out in 30 minutes, I'd go in and post bail."

After about ten minutes, an officer came and asked to see what I had brought. I started to hand the box to him and he backed away, saying, "I can't take it right now, I just want to see it." So I opened the box and showed him the bullets and the bag with the canister. 

"I'm sorry," he said, "We're not allowed to dispose of tear gas. We'll have to call the bomb squad."

So, we waited and waited some more, all the while Marie made comments on how the police obviously would be watching me, they probably already had a file on me, and how they'd probably search the car.

"It's okay," I said, "it's not like I have any dru... oh shit." I had forgotten about the trash bag filled with expired prescription drugs in the trunk of my car. I hadn't yet figured out how and where to dispose of them. There were even a few... narcotics... in there.

We laughed till we cried and then got hungry and debated whether or not to call and have a pizza delivered to the police station parking lot. We decided against it when we realized we'd have to explain the possibility of the pizza delivery person encountering the bomb squad.

Eventually the officer returned and said he'd talked with the bomb squad and since this was a small container of tear gas, it was okay for the officer to take it.

"It's military strength," he informed us, "It could stop a bear."

Which leads me to the one question I forgot to ask my dad when I told him the story.

Why?

I'll be on the safe side and assume they had a bear infestation at some point and needed to keep them out of the kitchen. Anything else, I'm not sure I want to know.