I am supposed to be working today, but I can’t. My mind is in a “PCF” better known as a “Parkinson’s Caregiver’s Fog.” The last 24-hours have been a roller coaster of emotion as I try to wade through the quagmire (difficult situation: an awkward, complicated, or dangerous situation from which it is difficult to escape) of trying to figure out how to come up with an additional $600.00 a month for Grandpa’s medicine.
I talked with a very kind young man at the VA who told me all the forms I need to fill out to qualify Grandpa for aid and assistance. I wonder how long it will take (I’ve heard up to six months) and if he will even qualify or is he is over qualified? That is the question. There are a lots of papers to fill out and I have other pressing responsibilities.
Wading through the quagmire – ugh! Glad God wears heavy-duty waterproof boots!
The human spirit coupled with The Holy Spirit – the will to face your limitations courageously and find creative solutions – that’s what I’ve seen in Grandpa. It’s taken a lot of courage and creativity for him to do as much as he can by himself, and humbly rely on family to do the rest. Still, with the many debilitating limitations Parkinson’s brings, Grandpa manages to find joy.
The need to take responsibility for his own health comes from a strong drive within, and I constantly find myself astounded by his positive attitude which transforms his limitations into possibilities. For anyone who faces physical limitations (or limitations of any kind), Grandpa is truly an inspiration.
There are only a few exercises Grandpa can do by himself, but for him they are essential. If you have always been healthy and not suffered any personal handicaps, you would fail to see their significance. Yet, these “small” routine efforts mean everything to Grandpa – and to us his care givers, because they give him a sense of independence and fill his day with purpose.
For instance, after taking his “power nap” after breakfast, Grandpa is helped out of bed and up onto his walker. From there he shuffles (some days fast, some days slow) off to the bathroom to do his “muffins”- a 500 step-in-place “mini-exercise” at the bathroom handicap bar. One day, he just added this newly invented exercise to his routine, which he nick-named after the kneading action cats make with their paws.
Muffins are one of the few exercises Grandpa can do on his own. He works out daily on an all-in-one home gym, which he has to be helped on and off of, but “muffins” are his own invention. And since necessity is indeed the mother of invention, Grandpa’s need to “do” for himself led to the idea of pulling himself up and out of his wheel chair onto the handicap bar, step in place at inintervals of 50, and sit back down again when he needs to rest. Muffins usually take him about a half hour, and I know the whole family is glad that he can do them by himself.
After he is done “making muffins,” Grandpa wheels himself backwards to the sink and gives himself what he calls “a cold water facial.” A cold water facial consists of patting his face and neck with cold water, wetting his hair down, and brushing it back into a “Will Geer-Grandpa Walton” hairdo.
“Where does he come up with these names?” Claire asks.
“I don’t know,” I reply, except we both agree, Grandpa is from another era – the golden age of Hollywood and all it’s glamor. The older he gets, the more sentimental he becomes, so the term “cold water facial” probably came from one of those classic Claudette Colbert/Clark Gable movies or an Ivory Soap commercial from “way back when.” Whatever the case, Grandpa’s senior jargon is charming.
Another exercise Grandpa does on a daily basis are vocal exercises, but you won’t hear arpeggios or scales emanating from his bedroom. No, instead you’ll hear a 90-year-old’s quiet but gusty version of “On an Old Rugged Cross” or “What a Friend We Have in Jesus.” Whenever Grandpa’s vocal cords start to lapse into a Parkinson’s whisper, he stretches them out by singing the great hymns of the ages – vocal exercises for body and spirit.
Faced with limitations? Think of them as springboards for witnessing God’s creativity. Pray and ask Him to show you a solution you haven’t thought of before. You just might find a new way to exercise your faith in a God who is limitless with inspiration and solutions – some of them seemingly small, but life-changing. You’ll never know until you pull yourself up to the bar and start doin’ “muffins.”
We live on a farm and keep an odd assortment of chickens and waterfowl. The chickens, for the most part, are a congenial lot, whereas, the waterfowl have an “ATTITUDE” every day. You have to be really careful around a certain gander, named after a character we heard about on a children’s record from the 1950’s. The song goes something like this:
Ozzie the Ostrich,
the bird with the long long legs,
nobody knows where he goes to doze,
or where he lays his eggs!
Crazy lyrics, but years ago, that song inspired our older daughter, Claire, to name our new white gander, Oswald.
You have to watch your backside when you’re in Oswald’s presence. You never know if he’s going to bite you, especially after you’ve just been nice enough to feed and water him. Our other geese are a little less threatening, but once there was a rooster who must have been a distant cousin of Ozzie’s. This high-strutting cock refused to appreciate just how good he had it here on the Novak funny farm. And because of that, he no longer lives here.
At first we thought “he” was a “she” so we named her “My Fair Lady.” Her beautiful black and white feathers reminded us of the striking costume Audrey Hepburn wore in a racing scene from the movie of the same name. However, when “My Fair Lady” started to “cock-a-doodle-do,” we realized our mistake. “She ” was a “he,” so we quickly changed her name to “Henry Higgins.” The name fit perfectly.
Henry was ornery and dangerous. He had the habit of jumping in the air and kicking you hard with his spurs when you least expected it. He nailed our landlady in the rear one day when she tired to shoo him back to the barn (we weren’t home at the time – oh, how I wish I could have seen that). Another time, he flew around the side of the garage like a stealth bomber and attacked our four-year-old who was innocently playing in the sand box. This premeditated maneuver brought Henry’s military career to an abrupt end. For everyone’s peace of mind, Henry had to go.
When our neighbor asked if she could have a rooster, we offered her Henry – permanently. With no little children running around her farm, her barnyard was much better suited for Henry’s aggressive and unpredictable behavior.
Although this happened many years ago, thinking about our current situation brought back fond memories of Henry Higgins demise (Just you wait, Henry Higgins, just you wait!). The last we heard, Henry had mysteriously disappeared into the woods, likely carried away by a fox or coyote. Needless to say, not a tear was shed. He was the meanest animal we’ve ever had on the farm, that is, except for Oswald.
One of the most aggravating farm chores we undertake on a daily basis is feeding the geese (or trying to feed the geese). It’s not too bad if you’re just pouring feed into their pans, but if you reach out to offer them a piece of bread, they show their appreciation by honking their heads off and trying to take a chomp out of your fingers. I’m almost positive this is where the saying “Don’t bite the hand that feeds you” came from. I mean, how ungrateful can you be? Geese have a love/hate relationship with the human race, that much is obvious.
Well, Grandpa has been exhibiting similar “goose- like” behavior with us the past few weeks. He’s back to complaining about minor irritations, digging below the surface like a chicken scratching for bugs in the burn pile. Yes, Grandpa’s been working overtime to find something to be disgruntled about, and in the process, he’s been aggravating the “heck” (sorry for the graphic language) out of his grandson and granddaughter, his chief caregivers, cooks, and bottle washers. In other words, he’s biting the very hands that feed him, get him out of bed, change his diapers, prepare his meals, wash his clothes, and puts him to bed at night…you get the idea. I sure wish Grandpa would!
I don’t know if it’s because I haven’t been there much in the last month and he misses my maternal input (it’s the most time I’ve had off in a year, and I’ve really needed it) or because it’s after the holidays, and cabin fever has set in, but Grandpa has gotten cranky and down-right demanding again. The object of his disdain this time is the issue of “double dipping ” and “germs.”
First he refused a jar of apple butter Eric placed before him at breakfast.
“You’ve all been double dipping out of that jar,” he complained.
“What are you talking about, Grandpa? Nobody’s eating this stuff right now but you!”
“Well, I’m not eating it!” Grandpa retorted, like a spoiled three-year-old.
“Fine,” Eric said, tossing the jar back in the fridge. “It doesn’t bother me.” Don’t major on the minors, right? Good job, Eric.
The next issue to surface was a request for Eric to put gloves on to dispense his medicine.
“You need to put gloves on when your handling my pills,” Grandpa demanded.
“What the heck, Grandpa?” Eric replied, incredulously. “I’m not going to do that!”
We’ve been dispensing Grandpa’s medicine for almost a year and a half now, and putting latex gloves on three times a day to place his pills on a spoon would be a waste of time and energy, not to mention completely depleting our local Walgreen’s store of their latex glove supply.
I could only imagine what might come next.
“Grandpa’s driving me crazy,” Eric confided to me on the phone, one day.
“Is he getting enough water?” I asked, my standard question whenever I think Grandpa is becoming internally imbalanced, which can lead to crankiness and erratic behavior.
“Yeah, he’s getting enough water,” he said.
“What about cranberry juice?” I suggested, trying to figure out if he had the second cause of cranky, erratic behavior – a urinary tract infection.
“Yeah, he’s getting his cranberry juice,” Eric said.
“Well, tell him we’re not changing anything,” I said.
You see everyone will be going along fine, when all of the sudden, Grandpa wants to change the routine. It’s not good enough that everyone’s happy and life is running smoothly; let’s change the routine so we can be in control. Maybe that’s part of Grandpa’s discontent, the need to be in control of something – anything, because all of his life is in the control of others, and when he can’t get his way in little things, he begins to feel that no one is listening, no one cares.
But that’s not true. We’re all just a little battle-weary from taking care of a 90-year-old rooster with Parkinson’s. Most of the time Grandpa gets what he wants the minute he asks for it. Like Henry Higgins, Grandpa loses sight of just how good he’s got it. He forgets how bad the care was in the the nursing facility and when we least expect it, he hits us in the rear by recounting his current list of grievances to the visiting nurse. When we meet his needs 99.9% of the time, it really hurts to hear about the 1% we’ve missed (kind of like a peck to the posterior by an overly protective goose).
In order for everyone to continue to be able to handle this situation, its necessary to remind Grandpa of a few things when he begins to act up. “We’re not changing anything, Grandpa. The routine works and we’re not changing it.” Now that we’re on to him, that’s one of our new lines, and of course there is always my personal favorite as a last resort – “Tell him, he’s biting the hand that feeds him!”
Honestly, doesn’t Grandpa realize that Eric is one of the last people he should be picking on? What if Eric get’s really mad someday and flies the coop. Not many 19-year-olds would put up with this kind of nonsense – this long (I haven’t told you the half of it). Where would Oswald (aka 90-year-old Grandpa) go then?
I think, maybe Grandpa and Oswald ought to share accommodations for a while. I know a nice little place where you can get all the eggs you want, and Grandpa just loves farm fresh eggs. After all, birds of a feather flock together – and those two have a lot in common.
I’ve had some funny (and not so funny) experiences involving Grandpa and his health issues. When he first came home from the nursing facility, he would challenge all of us concerning his care. “How do you know, are you the doctor?” he would say rather rudely. A lot of his complaints were solved by just using common sense, but in his childish way, Grandpa would try to push the limit.There was no way we could let him do some of the things he wanted to do.
The initial challenges we encountered were mainly over his desire to walk anywhere he wanted without anyone holding onto his safety belt. Grandpa is way past the ability to walk on his own all over the house, and although he rarely gets dizzy, he could fall over backwards which is common for people with Parkinson’s.
He had fallen a number of times in the nursing facility and after reading about non-restraint nursing facilities (I will not use the word “home” in the same context anymore) it is obvious, they did not use enough safety precautions with Grandpa. On the other hand, someone would have to be with him all the time and that just isn’t realistic. They would have been hard pressed to keep up with him because he is a very determined individual, especially when he wants his own way. It would have been nice if our family had been notified that he was beyond their care, but that’s not the status quo. They just wait for them to break a hip, end up in the hospital, and die.
After he had been home for sometime, Grandpa’s health began to improve and we were told by the visiting nurse that he could try to walk around the house unaided – but she didn’t mean unattended. Somebody always had to be there to walk alongside him. Anytime he tried to convince us that he could walk from one room to another all by himself, we would say, “Debbie said no, Grandpa!”
The second area of disagreement was over his bed railing. Grandpa tried every possible way he could think of to try and get us to put the safety rail down, but we wouldn’t give in to his demands. With a hardwood floor in his bedroom, there was no way we were going to leave him unattended. That’s because Grandpa was sneaky. There were times when we would catch him trying to get up on his walker alone or find him standing at the bathroom sink, trying to shave (great broken hip material). But, Grandpa wasn’t always in his right mind because of a medicine issue, so besides the rail being physically constraining, it became psychologically confining as well.
Benzatrophine, a Parkinson’s drug that Grandpa should only have been on a short time – and wasn’t – was causing him dementia symptoms. He became paranoid and claustrophobic about going to bed. Early one morning around 3:00 a.m., Eric awoke to the sound of a feeble plea. “Help!” “Help!” It was Grandpa calling out into the night in his raspy little Parkinson’s voice. Eric groggily arose and made his way to Grandpa’s room where he found him lying across the bed with his leg stuck through the railing.
“Grandpa, what the heck are you doing?” Eric asked.
“Trying to go to the bathroom.” Grandpa replied.
“You can’t go to the bathroom by yourself.” Eric said.
Eric freed him, changed him, and put him back to bed. I felt bad for Grandpa (and Eric), but there was nothing we could do. We reminded Grandpa that the doctor said he was to have the railing up at all times. Once Grandpa was taken off the Benzatrophine, his mind cleared up, and so did a lot of the bedtime baloney episodes (I say that respectfully), and he hasn’t mentioned the railing bothering him for months.
There have been other issues we’ve had to deal with such as Grandpa wanting Benadryl every six hours to clear up the drooling which became more pronounced when he was taken off of the Benzatrophine (I can see how some people get hooked on hardcore drugs. Grandpa was ready to kill for it).
“No Grandpa, you cannot have Benadryl that much,” I told him not so gently because these were doctor’s orders, and he knew it. “The doctor said you can have a 24-hour allergy medicine, but not the Benadryl.”
“Are you the doctor?” he said.
“Yes, I’m Doctor Mom!” I stated emphatically.
But Grandpa wasn’t convinced. He even challenged the real doctor on this one. “Well, those doctors are not always right, either,” he said.
“Oh, now the doctor isn’t even the final authority,” I said. “Listen dad, the buck stops here! That’s what the doctor prescribed, and that’s the way it’s going to be!”
He gave me a disgusted look and finally backed down.
Over the months, “Doctor Mom” has served him well, nipping most of his illnesses in the bud so he doesn’t end up staying in the hospital or worse. Last month it was a urinary tract infection, this month an impacted bowel. No, I haven’t received a doctor’s degree from one of those reputable institutions like Harvard, but I have received a tried-and-true education from “The School of Life.”
Being older myself – a little over the middling mark of a century – I’ve encountered a lot of health issues with either family, extended family or myself, so when Grandpa tries his 90-year-old “one-upmanship” on me, I remind him, “Yes, I’m Doctor Mom!” Finally, he seems to be accepting my authority in his life to make health decisions that are in his best interest. And that’s why he barely put up a fight this weekend when I said, “You’re going to the emergency room.”
“No!” Grandpa grimaced, as he clutched the trapeze bar above his bed. He was having another spasm in his rectum.
“This isn’t normal,” I told him.
“You’re right,” he admitted.
“Well, I’m not staying there.”
“I’ll stay with you, dad, wherever you go.”
It turned out he had an impacted bowel. Something Doctor Mom knew nothing about, but does now.
On the way out of the hospital, one of the nurses said goodbye and added that she was glad we didn’t have to stay overnight. She’s not the only one! Five hours later we were all gathered around the kitchen table eating dinner as if nothing has happened. I know one thing, Doctor Mom is grateful to God that He continues to help her make the right decisions concerning Grandpa’s health.
So remember this, if your parent has Parkinson’s and is partial to too much turkey and side dishes on Thanksgiving, make sure they drink a lot of water and get some exercise walking around the house – aided of course – or they may be struck with a very sluggish colon and the complications, thereof.
I still think my sister stuffed the turkey with a brick, but Grandpa keeps saying, it’s the best Thanksgiving meal he’s ever had.
My day today.
My middle daughter comes to me and reminds me she wants to host a Christmas tea party at church. It’s 12:30 a.m. in the morning. Her mind is alive with possibilities, mine, on the other hand, has shut down for the night. I am just thankful to have made it through another day.
I try to explain that this isn’t the right time to talk about a tea parties. She says it’s not a big deal. I say it is a big deal. She says it doesn’t have to be a big deal. I say there has to be decorations. She says there doesn’t have to be decorations. Now I am overwhelmed. She is over simplifying it and I am over complicating it.
I can’t talk about it anymore. It’s not the right time of day because it’s really the end of a long day and I fell asleep on the couch, but then I woke up again, and now she’s asking about a Christmas tea party. I love her enthusiasm, but I know I hurt her feelings because I couldn’t focus. I will have to discuss it with her later today, but not too late (she’s going to help host a great tea party).
My older daughter asks if we’re going to Aunt Joan’s as usual. I think we are, but Aunt Joan is moving to another state in a month or two – maybe. She was supposed to stop by and cut Grandpa’s hair, but she hasn’t showed for the last two weeks. Grandpa is beginning to look like a derelict. It’s time to make a trip to Charlie, the barber. Grandpa doesn’t like Charlie.
She says we can come to her house for Thanksgiving, but she says her kids really want to interact with my kids. This statement is in reference to that fact that the last couple of holidays we have spent there, the kids have all gone down stairs after the meal to play We Bowl and other games on their big screen TV. Not my choice, but I was too tired from taking Grandpa out of the nursing home last year to get up off the couch and tell the kids to come back upstairs to play parlor games. After a year of taking care of Grandpa, I don’t think I have the energy to plan a non-electronic game day. I think somebody else needs to plan the activities this year. Maybe, Martha Stewart?
I get a call from the physical therapist. He needs to come over three times next week to make up for one visit he missed (I don’t get it). Anyway, he asks if we’ll be home on Thanksgiving Day. No, I say, we’ll be at my sister’s. He asks me again if he can come in the mornings. I tell him again that the mornings are not a good time for Grandpa. I think he would know by now that mornings aren’t the best time for physical therapy for most Parkinson’s patients.
I am reminded by the younger kids that the older kids have been saying they don’t want to do Christmas this year. “What?” say the younger kids, “No Christmas?” No 19 and 24 year old could even think that way unless they were BURNT OUT from taking care of a 90-year-old man with limited mobility from Parkinson’s.” I will make Christmas happen,” I console the younger kids, “Don’t worry,” I say. What Christmas is supposed to even look like this year, I’m not really sure. Grandpa and Uncle Jay have already asked if we were going to have a Christmas tree. Somebody’s got to be in charge of that, and it’s usually me. I bought a small feather tree a month ago from Hobby Lobby to put in our house so we can put up our bigger tree at Grandpa’s. That was met with groans from middle daughter.
My brother emails me and says he needs to use “his” garage (the one at grandpa’s house) to store his stuff in because finances are getting too tight, and he needs to sell his other house. Says he feels bad asking me. Well, he really doesn’t ask, he just tells. We pay a hefty rent every month out of Grandpa’s income and now we don’t rent the garage? Hmmn. I tell him Claire’s car will be parked in that garage for the winter (plus there’s Eric’s motorcycle), but he can store his stuff to the side and in the basement.
Everybody keeps telling me what they’re going to do, and I just keep adjusting my life to their whims and demands. Round and round I go.
That’s why I can’t think about a church tea party. I am overwhelmed. I don’t know anyone at church, anyway. I hardly get to go. Sunday is my day to watch Grandpa. I feel so disconnected. I’ve worn my pajamas over to his house for the last week. I don’t even want to get dressed. I just want to be comfortable, but then I start to sweat while I prepare his meals and take care of Grandpa because the house is kept at an even 72 degrees which doesn’t mix well with flannel.
In the meantime, Grandpa is happy as a lark, thankful to be so blessed as to have escaped his prison sentence in the nursing home. I’m glad he is happy, but now we are all his prisoners. Yes, prisoners of love and devotion and duty. And I know that the Lord put me in charge of his care because I really do care for him and won’t take advantage of him in his old age.
I’m writing this too late at night – too early in the morning. All of my emotions are pouring out, especially the exhausted ones.
I read this post to my husband who gets up very early in the morning to go to work. I said, “Honey, you’re the only one who didn’t tell me what you needed today.” He says, “That’s good, but you better be off that computer this afternoon. I need to fill out the social security prescription form for your dad, check up on our taxes with Turbo Tax, and fill out the health insurance enrollment form from work!”
Maybe, I’m not the only one.
I take care of Grandpa on Sunday mornings so the kids can go to church. We watch some of the televised religious programs like In Touch with Charles Stanley and Power Point Ministries with Pastor Jack Graham, that is unless Grandpa’s too groggy.Yesterday morning, he was totally out of it, so before Claire left for church, she helped him back into bed after breakfast for his power nap. He missed all of his programs, but I recorded them so he could watch them later.
I didn’t know, because neither one of them said a word to me, but Grandpa gave Eric a real hard time about getting up, yesterday. He told him he shouldn’t go to church, but instead attend church at home like “other” people do on Sunday mornings. Unimpressed by his feeble attempts to dissuade him, Eric firmly told him, “I’m going to church and you’re getting up!”
There’s not much you can do when your 6’4″ grandson is towering over you with a determined look on his face. John 21:18 puts it this way, “I tell you the truth, when you were young, you were able to do as you liked; you dressed yourself and went wherever you wanted to go. But when you are old, you will stretch out your hands, and others will dress you and take you where you don’t want to go.” Unfortunately Grandpa is forced to go with the flow on Sunday mornings – and that flow is get up and go.
Grandpa generally wakes up around 8:00 a.m. to 8:30 a.m. weekday mornings, you can almost set your watch by him, but Sunday mornings, he is extremely hard to rouse. Doesn’t it figure? The one day we need everything to run smoothly like clock work, Grandpa is having one of “those” mornings. One thing I remember from having babies is you can always count on the the baby to have a rough night, especially when you have to go somewhere early the next morning. Lately, it’s the same with Grandpa. Sunday mornings are beginning to turn into a bit of a battle ground.
And, just when I make the observation that Grandpa rarely complains about arthritis or old age maladies like “the rheumatism,” he complains that his shoulder was hurting him all night long – from “arthritis,” no less. It’s possible that he pulled a muscle or something, but Grandpa is a bit of a hypochondriac and we tend to downplay whatever is ailing him, if it doesn’t bother him for more than a few hours.
We have often said that we’d love to have a 24-hour surveillance camera – a “Grandpa Cam” – installed in his bedroom so we can see what shenanigans are going on during those supposedly “terrible” nights when he doesn’t get any sleep. I’m not downplaying his discomfort, but we are aware that the slightest symptom may be used as ammunition to solicit sympathy for not getting out of bed in the morning – especially Sunday mornings.
For instance, on Veteran’s day, Grandpa was pretty tired the whole day, sleeping most of it away, until Eric said, “Gee, Grandpa, it’s too bad you don’t want to wake up today, I was going to take you to Applebbe’s. They have a special for Veterans today, your dinner is free!”
Grandpa opened his eyes real wide. “Really?” he said, “I’m awake!” and off they drove to Applebees where Grandpa had a tasty steak dinner – his favorite. It touched my heart that Eric would take Grandpa out when he already spends so much time with him everyday. So you see, if Grandpa has a good enough reason, he will be extremely cooperative and push himself to get up. Eric needing a break from “Grandpa care” to go to church is obviously not a good enough reason to get his 90-year-old self out of bed. Truth told, Grandpa is being ungrateful – and a bit selfish, but at the age of 90, that’s to be expected, and it’s our job to keep lovin’ on him because even Jesus was kind to the ungrateful.
I love what it says in Luke, 6:35 “But love your enemies, and do good, and lend, expecting nothing in return; and your reward will be great, and you will be sons of the Most High; for He Himself is kind to ungrateful and evil men” NASB. Not that Grandpa is evil – at all, but he does have a tendency to display an ungrateful spirit every now and then, especially Sunday mornings. I think, I smell a rat…