In a perfect world, I would focus the required energy on caring for Mom and answering her questions while the rest of my world hummed merrily along. Of course this is not the case, and when my anxiety level goes up my patience and productivity go way down.
Added to this strange combination of malaise and frantic but unfocused energy on my part is the fact that mom is not adhering to any schedule and pretty much doing as she pleases. I know it is a symptom of the increasing dementia, but it is unnerving to come home from a walk — after I left while she was resting in bed and she agreed that the plan would be for me to get her up and give her a snack when I returned home in less than an hour — only to find her somewhat unhappily and very expectantly sitting at the kitchen table and asking “What am I supposed to be doing?” And asking again when I can’t formulate an answer right away due to the fact that I am once again vexed and frustrated.
Mom is sort of like Forrest Gump, present in the oddest places but not really knowing why she is there or what to expect. I have become Forrest Grump — losing my patience and wondering when my almost-always cheerful, obedient mom is going to make a return appearance.
As we navigate this next phase, I really don’t know what else is around the corner. But as we all know, “life is like a box of chocolates.” Perhaps if I can manage to calmly unwrap each day with no real expectation, I may still get those pleasant surprises.
On my growing list of “things to do” is the updating of my Ipod. Old Faithful is with me on every walk I take alone. And while I appreciate having my own personal playlist, I am frankly tiring of a lot of the tunes on there. If I am in an especially foul mood, some of the songs manage to aggravate me. The only ones I can enjoy on any given occasion — no surprise here — are those by the Beatles and The Rolling Stones.
I am sure that my attitude is a reflection of my current state of affairs — just trying to maintain an even strain and not thinking too far into the future. Songs that are a bit too upbeat (anything by The Monkees) or too deep (i.e. “Black Hole Sun” by Soundgarden , which I used to love) just set me off.
So I found myself thinking that I could create a perfect playlist for stressed-out members of the so-called “Sandwich Generation.” Here it is, with some slight alterations reflecting the elder care situation —
“(I’ll Never Be Your) Beast of Burden” — Oh wait, on second thought …
“Don’t Fear the Reaper” — A bit of dark humor there
“Knockin on Heavens Door” — See above
“Here, There and Everywhere” — We find the dropped napkins, tissues, and cookie crumbs
“Ball of Confusion” — Self-explanatory
“Heartless” — How I feel when I can’t face another “Family Feud” re-run
“Twist and Shout” — What happens at bath-time
“Have I Told You Lately That I Love You? “– I hope so mom, but most likely you forgot
“Mother’s Little Helper” — Not so little anymore, thanks to “mommy and me” cookie time
“Nineteen Hundred and Eighty Five” — Times a day I answer YES to mom’s questions … and yes, the year I would love to revisit
“Too Many People” — Living in my house
“Bitter Fingers” — Wiping your jelly off the placemat, again
“Can’t You Hear Me Knocking?” — On the bathroom door, when I know that you are once again standing at the sink staring out the window into our new neighbor’s kitchen
“Livin’ on a Prayer” — And John’s paycheck
“Eight Days a Week” — How often I am asked what day we are ‘in’
“I Never Promised You A Rose Garden” — Thanks for the reminder, Miss Loretta Lynn …I mean it, and finally
This has been an alternately trying and thankfully sort of funny week with mom — one of those during which I found myself thinking that she was going to be the death of us all.
Last night I went to retrieve some of her disposable undergarments (we do NOT call them diapers) and restock her closet shelf. I was both amused and horrified to be reminded that she wears a brand called “Prevail.”
I sometimes think it’s a shame that elderly people with dementia don’t come packaged with a goodie bag — sort of like the ones they give new mothers at the hospital.
Some 20-plus years ago I was given — along with my precious newborns, of course — a plastic bag containing a number of small feel-good items including Oil of Olay moisturizer. “My aunt used this, I loved the smell,” I thought. “But I’m olive-skinned, only in my thirties — my skin is nowhere near dry, and I have no wrinkles!” I took a whiff for old time’s sake, and then tossed it in the trash. Fast-forward to the frown lines that appeared OUT OF NOWHERE after the first parent- teacher conferences, and only got deeper as time went on. In retrospect, I should have called the Oil of Olay folks immediately, thanked them for their thoughtfulness and foresight — and asked for a lifetime supply so I could literally fill the bathtub with that pink goo and jump right in EVERY SINGLE NIGHT.
Of course, the elder care move-in packet would be a bit different than the one for new mothers. It would include a generous-sized bottle of wine or vodka, perhaps. Earplugs and a sleep mask, for sure. (They snore like crazy, these older folks, and they ALWAYS need the hall light on). And who doesn’t love a T-shirt with a catchy slogan. How about this one — “The answer to all of your questions is pretty much YES!!!!! So PLEASE STOP!”
A small, cheery-looking pamphlet of advice such as those provided for parents of newborns would be helpful as well. It could be written in the most positive way, of course. (No need to SCARE people). Sort of like this — “Don’t be fooled by the placid countenance of your newly arrived parent/stepparent/aunt/uncle/friend,” it would say. “This person you have so kindly invited into your home will soon make it their own — in every possible way — by rearranging your schedule, questioning your motives, usurping your bathroom time, hijacking the remote, and basically ‘getting your goat’ — every single day.”
“Please do yourself a favor and stop expecting any sort of improvement expect at any point in time — no matter how much you cajole, rule-set, remind, or otherwise attempt to ‘fix’ your loved one, things will only get worse as time progresses.”
“Luckily, all of this upheaval will take place in the most stealth yet outwardly pleasant way, and many of your visitors will be sure to appreciate and envy the ‘cuteness’ and ‘happy outlook’ of your loved one.”
“‘Aren’t you lucky?’ they will remark, and — in every situation, no matter what your frame of mind — you are strongly advised to smile and reply ‘Yes, I am!’ in the cheeriest voice you can muster. Pat your loved one softly on the back, for emphasis, if the mood strikes you.”
“If you need some help in the area of forced cheer, we have thoughtfully provided complimentary coupons for the nearest doctor/pharmacy/liquor store — use them, and enjoy!”
Having worked in advertising, I know how difficult it is to “hook” a reader — and because everyone’s experience in elder care will be markedly different, it would be nice to “custom tailor” the advice in the brochures.
Mine, for example, might read like this —
“Along with those days when you are feeling so accomplished because you have met most of your mother’s needs and answered her questions cheerily, you will also have days that won’t perk along quite so well.
You will have days when you can’t quite get your act together and mom’s breakfast will be moved back from 11:30 to 12:30 because you took longer than you figured during your morning food run.
Feeling embarrassed and guilty, you will avoid her questioning eyes as you fumble with her English muffin.
You will want to scream at her when she repeatedly asks you the time because she always complains about your kitchen clock that has veggies instead of numbers and you don’t care to answer her just yet — and when you finally tell her that it is 12:30, only to keep her quiet (she is complaining about that ‘stupid’ clock AGAIN), she will say ‘I’m eating BREAKFAST at 12:30?’
And although deep down you know she is most likely just questioning the situation and not blaming you personally, you will still have to resist the urge to toss the English muffin in the trash along with her fresh-brewed Keurig coffee fixed just how she likes it — two teaspoons of sugar, heavy on the milk, stir it well — and ask her how she SUPPOSES YOU COULD MANAGE TO FIX MEALS THAT SHE EXPRESSES HER ENJOYMENT OF EVERY SINGLE NIGHT IF YOU DID NOT SPEND A RIDICULOUS AMOUNT OF TIME IN THE GROCERY STORE?
And a bit later, when you’re still feeling like an elder care loser and your coping skills have taken flight, you will call your husband at work and he will hear the sadness in your voice and ask you what is wrong.
And you will manage to say, through tears, ‘I’m nothing — I’m nobody.’
And he will respond with kind and consoling words but you won’t hear any of them because you feel so far flung — like you and your mom are castaways on some desert island thousands of miles from civilization — and you feel incapable of making any kind of real connection to a human being who is out and about in the working world.
But somehow your husband’s words will make a dent in your sorrow, which by now feels self-centered and foolish. And you will calm down and tell yourself that you will work hard to make tomorrow a better day.
And somehow you will manage to do so.
And then, on that next better day, your cousin will text you and suggest getting ‘the ladies’ together.
You will wonder how your mother, whose dementia is quickly worsening and who falls asleep at the breakfast and dinner tables in mid-bite, will manage in such a situation with her sister who has not seen her for a month.
But you will throw caution to the wind and head to a nearby riverside park after dinner, where you and your cousin will manage to locate a sturdy metal dock and park the ladies next to one another in their matching wheelchairs.
You will make sure the ladies get the best view of the nearby boats as the sun sets.
You will be amazed by the absolute beauty of the evening as the reddening sky lends a pink cast to the water and the passing boats and the large white mansion across the river.
You will remind yourself that you used to view such beauty as a promise that tomorrow would be a wonderful and day.
And you will cringe at the realization that you also used to think that making selfless choices and always putting others first — no matter the cost — would guarantee protection from pain and heartache.
But at the age of 57, you have finally learned that this is not the case.
Life can be cruel and unpredictable, and the doing of good deeds does not insulate anyone from pain.
And although this realization disappointed you at first, it has also given you the freedom to live in the moment and start taking better care of yourself.
So you will take in the view of a colorful nearby outdoor restaurant, chat and laugh with your always-cheerful cousin, and take a deep breath.
You will notice how solicitous your Aunt Millie — the sharp-minded one — is to your absent-minded mom, and it will warm your heart.
Then you will hear your Aunt Millie stumble on a name while telling your surprisingly-engaged mom a story.
And you will see your mom react with a laugh — totally ‘calling out’ your aunt — and then sling a few good-natured barbs in her direction.
You will then realize with utter shock that your mother is magically transforming into her former self — the hurricane, the force to be reckoned with, the one who never gave anyone a free pass but was always generous with her much-loved lasagna and her sage advice.
And you will be filled with joy and relief as you see the two sisters begin to laugh hysterically as your mother continues to roll her eyes and basically bust her sister’s chops.
After the sun sets, your mother and her sister will give one another a kiss goodbye and say ‘I love you’ as they always do.
You will wheel your mother back to the car , thinking that it was an all-around fabulous evening — knowing full well that your her quick wittedness was, like the beautiful sunset, not a harbinger of better days to come but simply a gift to be savored and enjoyed in the moment.
On the short drive, your mother will repeatedly ask if she is going home, if the cat will be there waiting for her, and whether she has time to close her eyes.
‘Yes, yes, and no,’ you will say in reply. More than a few times.
Deep down you will wonder if the woman you saw on the dock was your ‘real’ mother, and the dementia was something she dreamed up to torment you.
You will immediately laugh to yourself and question your sanity — not for the first time in recent memory.
When you arrive home, your cat will greet your mom as advertised.
She will be suitably flattered and thrilled.
And you will find yourself feeling extremely grateful. For moms. For cats. For sisters. For cousins. For aunts. For kind husbands and endlessly patient children. For sunsets. For boats and beautiful mansions, even if they are not yours. For living in the moment.
And for the promise of tomorrows, whatever they may bring.