Saturday, July 9, 2016
Wednesday, June 29, 2016
So I have not one but TWO good things to report today. The first is the tastiest thing I've discovered in a long long time. It's The Pioneer Woman's Iced Coffee, an enormous tumbler of which I'm enjoying even as I'm typing this.
Saturday, June 18, 2016
I promised myself that I would only write about positive events this summer, and I fully intend to do just that. But as I relate the following story, keep one thing in mind: As far as my mother knew, everything was just dandy. I'm seriously happy that Mom had no clue about the crazy chain of events that took place in order to make her homecoming a reality.
It went like this:
At the end of May, I got the call that I was waiting for: it appeared that everything was in place to move Mom, who was living in a nursing home at the time (and wasn't liking it one little bit), back to her own home and her own bed. The bathroom was remodeled, the wheelchair ramp was built, the pantry stocked with her favorite foods, and we had hired two caregivers: one full time and live-in, the other part time on call. I almost broke my arm patting myself on my back as I drove up to the nursing home. We thought of everything! I thought. I pulled the car right under the carport in front of the building, ready to whisk Mom away. I brought our part time angel caregiver Isabel with me and we were smiling and laughing as we headed for Mom's room.
Mom greeted us with a giant smile, dressed and ready to roll. "Going home!" she kept repeating. What fun. Isabel and I began packing up Mom's belongings as one of the nurses stepped into the room.
Funny, I thought. She seemed so pleased for Mom yesterday when I spoke to her about the move, but today she looks downright cranky..
"Stop packing your mother's things. I'm not sure that you have the right to take her home".
"SAY WHAT?! I know for a fact that Mom's doctor was in total agreement with her discharge -- and what the heck could have changed since yesterday when I asked you to get her meds ready?"
"Just don't do anything until you hear from our administrator and director of nursing." and with that she turned about face and trotted off.
I told Isabel, "Oh yeah? Keep on packing everything. We're going home. She says I can't?! Just watch me!"
Thank goodness Mom had nodded off for a nap in her wheelchair and missed the conversation.
So the next few hours were spent prying information out of the staff, which yielded this infuriating and unbelievable tidbit: A patient advocacy attorney was challenging our family's claim to guardianship of my mother.
After I regained consciousness from falling over with disbelief, I was furious. A family that included three RNs, one attorney, an engineer, a teacher with multiple advanced degrees would not be capable?
The legalities would be decided at an upcoming court date, but finally I was told I had permission to take Mom home. ".....for the time being..." Apparently the patient advocate insisted that the only safe place for Mom was the nursing home.
I pushed my anger aside temporarily and breezily told Mom that everything would be fine and finally tucked her into the car. She, Isabel, and I were thrilled to see the building where Mom had unhappily spent the past four months getting smaller in the rear view mirror as we sped home.
Mom's homecoming was everything I had hoped for. Although she didn't have all the words that she wanted on the tip of her tongue, her happiness was evident as she patted her table, her kitchen cupboards, her recliner while saying "Home!"
When we tucked her into bed that night she kept repeating, "MY bed! MY bed!" before drifting off to sleep with a very contented smile.
I was thrilled. I knew that the issues that Mom is having as a result of her stroke came home from the nursing home with her and that just being in her own home was probably not going to provide a miraculous cure, but the fact that she expressed joy, was eating again, and sleeping soundly through the night were all enormous steps toward a much more comfortable quality of life for her.
Which is what this whole adventure is all about.
So the saga continues.......
Very long frustrating story shortened: We won our case. After the advocacy attorney stated, "I have ZERO confidence in this family's ability to manage this woman's health care and finance," the judge raised his eyebrows and asked my sisters to state my and my sibling's education and occupations after which he looked skyward and said with exaggerated patience, "I want the record to state that I have COMPLETE confidence in this family."
So there, Mr. Looney Tunes Attorney who, as we later found out, wanted to gain guardianship of Mom himself and therefore would earn big bucks in legal fees as well as charge big bucks fees to manage her substantial estate. What a crook. What a Snidely Whiplash.
I am so thankful that Mom, all cute in her sweater set and necklace, slept through the entire proceedings in her little wheelchair. She would have been devastated had she heard the outrageous pack of untruths that were spouted by Snidely Whiplash bogus attorney at law, during the hearing.
So we happily packed Mom back into the car and headed back to her home to meet her fully time caregiver who had just arrived. She seemed to be a nice person and introductions were made all around to my siblings, Mom's sister, and neighborhood friends. And after the cake and coffee dishes were put away and everyone had left, she and I began to get to know each other.
I fired her the next morning. For a whole lot of reasons, some of which I don't want to elaborate upon here, except to say that after I saw her feeding Mom her breakfast wearing the same gloves that she had on her hands when she provided personal care for Mom in the bathroom..........egads. It was obvious that this person had exaggerated her abilities and had absolutely no clue how to be a safe caregiver. She was gone within an hour. Good thing she had her own car.
I was so glad that I had been there to manage that little episode, although as she drove off, I wondered who we could get to replace her. My siblings were completely in agreement with my decision although were slightly panicked: WHAT DO WE DO NOW? After closely examining my emergency travel stash of medications and determining that I could probably handle another week with Mom, I volunteered to be her stand in caregiver. But I could tell that what little energy I had was fading quickly and although I was confident in my ability to transfer Mom safely and would be able to take good care of her, I knew that I would pay for it later. Big time.
And then, the heavens opened and beautiful angelic music began to play as Isabel agreed to take the full time live in job.
I love this woman. She had already demonstrated her considerable skills as a CNA to me in handling Mom and discussing her care, so I felt an enormous sense of relief. When Isabel noticed my obvious anxiety, she smiled and patted my arm. "Jul. Everything will be OK." My goodness. She's a keeper.
So finally we arrive at the happy ending: Mom is happily living at home with 24/7 caregiving by a delightful and competent woman.
And that's what matters most. I'll see you in July, Mom.
Wednesday, June 15, 2016
Hey, y'all.......remember me? It's been so long since I put up a post I feel almost as though I need to reintroduce myself again.
But then, that's silly since I remember YOU. And it's good to see everyone again. So here we go:
Over the years as I've dealt with my disease, I've learned the importance of simplifying just about everything: my clothing, my bathing routine, my cooking, and anything else that could potentially sap precious energy. And as is so often the case, when one person in a marriage has a chronic illness and streamlines his or her responsibilities, the other spouse is left holding the bag with all those duties that are difficult for a chronically ill person to accomplish. Which has been abundantly obvious here at our house.
Yep. John has shouldered more than his share of the tasks around here including bringing home the bacon and caring for our home. And lately, it seems that caring for everything has consumed nearly all of his time and also HIS energy.
Not good. The man ends each day absolutely exhausted which simply can't be good for him.
It just wouldn't be fair if John risked his health to assist with mine. So we decided that we needed to apply the same principles of simplification and streamlining to preserve his energy as well. One of the choices that we made with our goal of reducing the amount of time and energy required to keep our house and yard up was to sell part of our property.
[Insert our shocked kids and friends exclaiming, WHAT?! here.]
Our home was built on two good sized city lots and it was wonderful when the kids were young. I was healthy, and we all had more time and energy to maintain that great big chunk of trees and grass.
But now, the kids have homes of their own and aren't around to provide
We accepted an offer and will close on the sale in just ten days. It will be a bittersweet day: we have such fun memories of all the shenanigans that took place back there but then..............Woo hoo! No more endless pruning and mowing and hauling compost and spraying and........! Of course there's the cha-CHING factor which helps a great deal as well.
We have left ourselves plenty of space which has just the right amount of grass and flowers and trees with room to add more.
It will be fun to transform our original lot into a new back yard. I'll keep y'all posted.
Thursday, May 26, 2016
It's abundantly obvious that I have been neglecting my blog since Christmas.
Sorry about that.
I've been spending some time in thought trying to understand what the heck is going on. Finally, I believe I have discovered the cause of my reluctance to just write a few words and hit the publish button, for cryin' out loud.
Yes. I'm pretending that I don't have a chronic illness.
See? It's hard for me to even type the words Sjogren's syndrome. Denial is a powerful thing.
Even though I've finally realized WHAT I'm doing -- or not -- I have no desire whatsoever to spend the emotional energy discovering WHY. BICJ has put her imaginary foot down in refusal to poke or prod my psyche. She has thrown herself protectively in front of the emotional center of my brain and has declared, "ENOUGH."
For once, I agree completely with my bratty alter ego. It's time for an emotional time out from the feelings of loss or frustration or angst that have prevailed since the beginning of the year, including my ongoing battle with autoimmune disease. So I find myself focusing on pleasant things, and fun projects which require extensive online research and purchasing. Shopping! Woo hoo!
Blog about Sjogren's syndrome? What blog? What's a blog?
So I am going to indulge myself this summer to just write about people, places, and events that make my heart smile. The biggest grin inducing event lately has been my ongoing and tantalizingly close to finishing obsession with grey paint. And it has been just a hoot.
Well, it's been a hoot for me. I'm so lucky that I have such an amazing team of
I just love the color that I chose. It's called "Aluminum Foil", which I think describes it perfectly. It's so much fun to work with one of those strange chameleon type colors -- grey, blue, white.....the ambient light changes this color into one of a million different hues. Because who wants just ONE boring color on your walls?
Love this charcoal shag beauty. It's so great to have a cushy spot to just splat myself flat when I need to.
Y'all know the feeling.
See how the color of these flowers just pop against that soft grey?
Next up: Hanging the curtains.
One of the most fun things about this project is that each and every element of it was a screaming bargain. Paint? The best Sherwin Williams has at 40% off, including brushes, tray liners, painters tape and everything else that I could think of. Brushed nickel replacement cabinet hardware? A fraction of Lowe's prices. Curtains? An absolute steal at $24/pair of panels. Rug? Online bargain find at 70% off and free shipping. The fact that it was the second one that I bought because the first one I bought was bright blue instead of grey as advertised and I had to wrap up and send the first one back? Only meant more shopping. Bonus.
Ahhh. What fun. I wonder what's next............
Wednesday, May 18, 2016
So the flight path between Portland and Minneapolis continues to be well travelled by yours truly. Actually I'm getting rather used to it since John, the sweetie, has sprung for business class tickets which make an enormous difference in leg room and location near the front of the plane. Highly conducive to in-flight napping which helps enormously in the need to hit the ground running in order to help my siblings care for the needs of my recently widowed and even more recently stroke-inflicted mother. Mom's needs are considerable and required placing her in a nursing home for rehabilitation after her hospital stay.
About a month ago, after medicare coverage expired and private pay requirements kicked in, and in deference to Mom's continued requests to return to her home, we were able to happily inform her that, "Mom! We're bustin' you outta here!"
She seemed really happy to hear that. With her memory issues, she doesn't remember this from day to day, but that means she gets the good news every day. Smile.
So my brother and brothers in law have remodeled her bathroom to include a wheelchair shower, elevated toilet, and grab bars everywhere. They've also put in a wheelchair ramp from the garage to her door. The biggest hurdle to bringing her home though was finding skilled caregivers to be with her 24/7 since at this point Mom isn't safe when left alone for any period of time. She's wheelchair bound and unable to do any of her own personal care which means these caregivers had better know their stuff. But Mom continues to be a real sweetheart in personality and temperament, so we're confident that she will be a pleasant person to take care of.
I was able to hire one of the caregivers last visit home, and yesterday my sisters delivered the great news that another had been found. Which means that we're on the home stretch in Mom's making the great escape from the nursing home. Not that this nursing home is particularly bad -- but by it's nature, it's ......well..... a nursing home. And for some residents, it's absolutely appropriate for them to be there. The building is new, clean, and furnished attractively. The residents each have a private room and bath, and are provided meals in small dining areas. It has a large activities staff who do their best to provide ways to keep residents engaged, active, and entertained.
But the bottom line is that it is still a nursing home. And Mom, after several months, just hasn't made the adjustment. She's becoming severely depressed and withdrawn. So we decided that as long as her care was now private pay its time to use the same amount of money to attempt to make her happy at home. I think that if I lived where Mom's home is, I would feel the same way.
Her little ranch house was built as Mom and Dad's retirement place just up the hill and in the woods located at the corner of their farm. From her dining room table, Mom has spent countless hours watching the seasons, the farm animals, and the deer and animals playing. [Insert Home on the Range melody here.]
Oh, yeah. It's a beautiful serene place. There's is not any nursing home on this planet that could compete with that.
Making a move like this happen for someone with complex medical needs could be a tricky process. Especially when there is a possibility that there will be days that Mom may not even recognize this house as her own. But it's a risk that we're willing to take.
Getting Mom home will be the first step toward helping Mom return to the wild woman that she used to be. And she really was one. wild. woman. Up until a few months before her stroke, she was harvesting an abundance of produce from her garden and canning, freezing, or pickling every bit. She was the primary caretaker of a local retired priest, a member of a crazy busy church group, and loved being part of a team on a bowling league. There's actually a zillion other things that this 82 year old lady would do to occupy her very busy day, until in one unfortunate minute when a stroke changed everything. Like I said earlier. She was a wild woman even at an advanced age.
Our goal is to get our favorite wild woman back home viewing the local wildlife as soon as possible. We're shooting for Memorial Day weekend but it may take as long as mid-June. It's all good.
And speaking of wildlife? We found out recently that TWO BLACK BEARS have taken up residence on the farm.
Yes. Bears. Plural.
So it turns out that a gentleman that works for Dad and Mom was walking into one of the machine sheds on the farm. He stopped to look up at the ceiling when he heard a strange sound and found himself looking at a small furry bear cub peeking over the edge of a very old horse carriage suspended from the rafters. And then spotted the mother bear walking along one of the rafters toward her baby.
Yes. Bears living in a horse carriage. Hanging from the rafters of a very old building. I'm telling the truth, honest.
We don't know if Dad knew about the bear nursery on his property, but I'd kind of like to think that he did. It would be just like him to get a kick out of bears hanging around........and I wouldn't be surprised if he was leaving jars of peanut butter around for them.
But that's pure conjecture.
Once we get Mom home she may have more wildlife to see outside her window than her expected squirrels and birds. I was thinking we should name the mother bear Bernie. Or Bernice. You can read these very reassuring statistics about black bears like Bernie here. We're told that she will probably move on once her cub is older. Bummer.
Wednesday, May 4, 2016
So I'm back in Wisconsin again. You may recall that my mom had a serious stroke a few months ago and me and my siblings are kept hopping to coordinate her care and finances. So I'm getting really familiar with our airport and the Minneapolis airport.
I feel like Wendy from Peter Pan. "I'm FLYING!"
So far I'm appreciating the fact that I can get on a plane and like Wendy, just go where I need to go. And I have to confess that when I think about the enormous changes that have occurred in my childhood home with the loss of Dad and Mom in a nursing home..........it feels as surreal as Never Never Land.
I anticipate many flights ahead. Thank God for airplanes.
We'll talk soon.
Friday, April 29, 2016
Such a momentous occasion yesterday!
**sniff....dabbing emotional tears**
Announcing the arrival of the newest Julia body part: Tooth!
The dimly lit auditorium is crowded, boisterously loud, and smoke-filled. The raucous crowd focuses on the boxing ring brightly lit in the center of the room. An official stands in the spotlight and grabs the overhead microphone.
"Ladies and Gentlemen! In this corner, the heavyweight champion - Rock 'em Sock 'em Sjogren's Syndrome!"
The crowd cheers wildly.
"In this corner, the lightweight contender - Spittin' Sammy salivary gland!"
The platinum blonde next to you adjusts her mink wrap as the crowd jeers. She stops chewing her wad of gum long enough to lean over and comment, "Awww. Poor little guy don't have a chance.."
Unfortunately, Blondie is right. Anyone who deals with the heavyweight champ Sjogren's Syndrome knows that our saliva glands don't last long in the ring before a KO punch puts them down for the count. Continue reading here.
Tuesday, April 26, 2016
It all started when a corner of the wallpaper border in my kitchen began to peel away from the wall.
I wasn't all that surprised since it had faithfully hung there for at least a dozen years. And, to be honest, it looked every day of those dozen years. I stood back and looked around my kitchen, dinette, and family room with a critical eye and decided that the overall color scheme looked a dozen or more years old too. Back then, the tuscan colors -- deep rich hues of gold and red and green -- were cool, but now..........were faded and chipped by years of chairs and couches and dogs and kid abuse, and were starting to look dated and old.
I decided it was time for a change. But I wanted to take my time deciding what my new color scheme would be since in all probability it would too be around for another dozen years. Where to get inspiration, I wondered......
Enter DIY Network and HGTV. And a whole new routine entered my life: I was fixated in front of my television, coffee cup in hand, as I examined all of the interior decor themes of the zillion homes that were featured on the shows. Gradually I became familiar with all of the hosts of the shows and could predict what they would say as they looked at homes that represented the "before" in the makeover scenarios.
I have to say I was a bit miffed when one of the designers walked into a kitchen that was a dead ringer for mine, wrinkled her nose in disgust and declared that the whole kitchen simply had to be gutted.
Say WHAT? Took the entire duration of the episode of the show to unruffle my feathers.
For awhile, I totally bought into the concept of each show that without fail goes something like this:
1. One must realize that one's current home is ugly.
2. To fix the ugly, one needs to haul in a dumpster and toss in all of your appliances, furniture, cabinets, toilets, flooring, and rip out at least one wall. Preferably two.
3. You will be required to lose the word "room" from your vocabulary. It will be replaced with "space". For example: "Once we rip out these walls, toss all the appliances, furniture, cabinets, toilets, and flooring, this will be a great space." It is acceptable to substitute the words "open concept".
4. Immediately after dumping all of the items in your home interior into a dumpster, one must take a trip to someone else's dumpster and "reclaim" or "recycle" or "up cycle" or "repurpose" at least one item. Which must be incorporated into the new design and placed in a highly visible spot. So that one can point to the item and modestly comment about your commitment to recycling to preserve the ecosystem. Earn bonus points if the item is rusty.
5. Hosts will find a major structural issue with one's home which inevitably results in someone shouting "But that puts us way over our budget!" with anguished facial expressions.
6. By the end of the show, one's home is magically transformed into a palace inevitably decorated in a modern style which means hardwood flooring, neutral wall colors, a kitchen gleaming with stainless steel polished to a blinding shine, and decorated with an enormous stark wall clock, barn doors, and most importantly: absolutely nothing which reflects one's personal life with the exception of three family photos placed tastefully on a sleek stone fireplace mantel. That overstuffed, comfortably worn sofa with the hand knitted throw gifted from Aunt Martha? Gone. Replaced with something claiming to be a couch but really is a lightly upholstered slab perched on spindly stainless steel legs. And the his and hers Lazy-Boy recliners positioned directly in front of a very large television? Check that dumpster. One will find them there nestled amongst the pile of throw pillows and Aunt Martha's handiwork.So I thought seriously about adopting this process and design look into our house. For about three minutes. Then I came to my senses when I realized that although I wanted to change the color scheme in our kitchen and family rooms (I refuse to use the word "space"), I didn't want to adopt a decorating style that doesn't reflect John and I. We like comfy leather furniture; and our recliners will only leave after they've been completely worn out. After which they would be repaired with two other recliners. I don't want to tear down any walls in our house because we planned where all those walls would go when we built it. We may have updated some of our kitchen appliances with stainless steel versions but my uncool hanging pot rack will stay right where it is complete with my grandmother's huge coffee pot and her glass cookie jar.
It took forever to choose new colors for our walls but we finally decided on a light grey with the appropriate name of Aluminum Foil.
I'm planning on using yellow accents in the same shade of my foyer paint. Just like the colors in this pillow. Which is getting a bit deflated but will remain front and center with it's mate on our leather sofa.
John looked a bit panicked with I declared my intentions to embark on this big project; but after I told him that I wanted us to take a leisurely approach with absolutely no deadlines, he was immediately on board. And of course, we figured we'd rope Greg and Terese into helping. Turns out they both think a Friday evening spent removing wallpaper is the cat's meow.
I am SO done watching renovation television programs. Except for Property Brothers.....because um....... during the show I won't be focused on home design or decor.
Just kidding, John........my hunky hubba hubba husband. (John strongly dislikes the Property Brothers.)
I'll keep y'all posted on our progress. Hey -- more opportunities for exercise!