A day in the life of a #ReluctantCaregiver

118142600_8f7251c825_bIt was 1:44 a.m. on a Thursday morning when the electronic box by my bed started blaring a very loud tune that was way too cheerful for the hour.  It meant Mom had pushed her “call button,” a wireless device I had purchased so that she could summon me when she needed help.

I jumped out of bed and, in a zombie-like state, headed for the stairs.  When I arrived in Mom’s room (previously the master bedroom), the lights and TV were on, as always.

“What’s up?” I asked.

“I’m cold,” she answered.

Mom complains daily that my house is too cold.  At an average of 75 degrees (my heat pump is on its last legs and I can’t get it any cooler), I think it’s rather balmy most of the time.  Mom wears long sleeves and a sweater, or wraps up in a blanket, as she goes about her day.  But at night, she insists on sleeping without covers.  Her feet, especially, must be exposed.

This is the second time she has called me to cover her up.  I make a mental note to make sure the sheet and comforter are within her reach next time.  I cover her up, and head back to bed.

At 7:24 a.m., the machine blares more annoyingly perky music.  I had hoped Mom would sleep until her aide arrived, but not today.  She has to go to the bathroom, so I help her get up.  She complains again that I took away her bedside portable commode at the behest of her physical therapist.  She needs the exercise of walking to the bathroom if she is to regain her mobility.

She’s wet, so we begin the process of cleaning up and dressing.  I insist she wash the parts she can reach, and wash the healing pressure ulcer on her bottom with wound cleanser spray.  Then I slather her in Calmoseptine ointment — a kind of diaper rash cream for incontinent adults.  I check her blood sugar and write it down in the chart I created to track her health and activities.

The hardest part is the compression stockings.  I bought her some snazzy argyle ones — and they are just as difficult to put on as the hospital-issued ones.  I sit on the hard bathroom floor and finally get them on her.

Breakfast is next — tricky for someone with kidney failure.  Not too much protein, sodium, potassium or phosphorus.  Cereal with blueberries and coconut milk, coffee with coconut creamer, and a dinner roll with coconut spread (we’re avoiding dairy as much as possible). It seems like a bad meal for a diabetic, but you can make up for the carbs with insulin.  There’s no way to counteract the excess phosphorus, protein, and potassium in foods like eggs, oatmeal, orange juice or bananas.  A diuretic takes care of the sodium, but we still watch her intake and try to keep it under 140 mg per serving.

Finally, her aide arrives.  I fill her in on the morning progress and head upstairs and back to work.  I’m lucky that I have a flexible job that permits me to telecommute regularly — otherwise, I could become one of those family caregivers who has to take a leave of absence to care for a loved one.

During the day, I try to stay hidden away so that I can work.  The occupational therapist arrives; I greet her and return to work.  The home health nurse is next — I have to be there to help Mom answer questions, because she doesn’t remember her symptoms.  The nurse checks the sore and declares it healing.  Yay!  A victory!

At 1 p.m. the aide from an agency that I reserved through a “backup care” benefit offered by my employer comes to relieve the morning caregiver.  While I work from home, I have found it difficult to be interrupted every 40 minutes when Mom (who has urge incontinence that is probably due to her dementia) has to go to the bathroom.  So I called in extra help until she is strong enough to make it to the restroom alone.

My dog needs to go out, so I take her out to the front yard.  When we come back inside, she decides to scoot her butt along the wood floor and all of the throw rugs — making a mess two days after the housecleaner had mopped.  I decide to take care of it later and return to work.

The rest of the afternoon rolls along smoothly, with the aide keeping Mom company and helping her out by getting snacks, refilling her water-glass, and making sure she changes position regularly.  And of course there are the frequent bathroom trips.

The aide leaves at 5:30 p.m., and I take my computer downstairs and continue to work, in an effort to avoid too many trips up and down the steps.  During one of her bathroom breaks, I mop the floor.

After about an hour, I start dinner.  I’m putting rice on to cook when Mom calls me to help her go to the bathroom. Again.  I get her settled on the toilet and go to check the rice, hurrying to the stove — where I step, with bare feet, on my dog’s bone.  The hours of her gnawing on it have sharpened it into a dagger, and it’s sitting on the floor like a jackrock.

I scream with pain as the sharp bone punctures the bottom of my right foot in the arch.  I hop around a bit, cursing the bone and the dog.  Finally I hop into the bathroom where Mom sits on the toilet.

“Is something wrong?” she asks with a deadpan look when she sees the tears on my cheeks.

“Didn’t you hear me screaming in there?!” I ask.

“Yes, I wondered what was going on,” she said.  It was obvious she had forgotten hearing my hollering.

She offers to help me clean up the wound and bandage it, so I hold my foot over the bathtub and pour hydrogen peroxide over it, leaving a trickle of blood going down the drain.  Mom applies a bandage, and I help her get up and back into her recliner.

At dinner, she claimed not to be hungry, but ate a steak, rice, and a salad.  Then she asked for dessert.

We sit on the porch and I drink wine while she repeatedly asks why I don’t have blinds on the porch.  I’ve learned she hates the dark, and insists on pulling the curtains as soon as dusk arrives.  I repeatedly answer that I enjoy looking out into the dark.  She repeatedly asks if anyone (meaning an aide) is coming tomorrow, who is coming, and what time they will be there.  The answer is always the same:  “Yes. Ashley. 8:30.”  I’m used to the repetition and don’t let it bother me.

By 9 p.m., I’m exhausted and head her to her bedroom.  She complains it’s too early to go to bed.  I insist that I’m tired and need to retire to my quarters.

The bedtime routine ensues — blood sugar check, insulin shot, cleaning up, nightgown on, teeth brushed.  Then the hard part — the adult “nighttime” diaper that her experienced aide advised she wear.  Unlike the Depends she wears during the day, this garment has tabs like a baby diaper.  She can’t stand up long enough for me to fasten it.  Attaching it while she’s sitting causes it to sag.  She complains about the sag.

I give my usual answer:  “Sorry, Mom, I never had kids.  I don’t know how to do this stuff.”  She laughs.

Within 40 minutes, she’s in her hospital bed, bare feet propped up.  No covers.  The woman who has been freezing all day is now overheated, even though she is more scantily clad.

This time, I push the sheet and comforter beside her on the bed and make sure she can reach it.

My glass of wine and I go upstairs — so that we can do it all again tomorrow.

Ginger Thompson is one of more than one million family caregivers in Virginia who take care of a relative at home in order to keep them out of facilities.  She feels very lucky to have flexible work hours, the ability to telecommute, and the financial resources to hire experienced caregivers to help her care for her mother, Helen, who suffers from kidney failure and mid-stage dementia.  Follow her on Twitter @gingwrites, with the hashtag #ReluctantCaregiver.  Her mother’s anecdotes are hashtagged #HelenQuips.

 

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#ReluctantCaregiver: Dimensions of dementia

Dementia-75Today my Mom thought she was in the town where she grew up.  Everyone she saw, she thought had some connection to her hometown.  It doesn’t matter that she hasn’t lived there in 40 years — that’s where her mind resides today.

While waiting for a CT scan, we ran into an aide who works at the assisted living facility where Mom lived until she moved into my house two weeks ago.

“How’s everyone in Webster?” Mom asked her, referring to her hometown deep in the West Virginia mountains, hundreds of miles from here.

Being accustomed to dealing with people with cognitive issues, the aide deftly handled the question without correcting Mom.  What I found most interesting was that Mom was so happy to see a familiar face.  Fortunately, she has forgotten that she wasn’t particularly fond of that aide.

After her doctor’s appointment, where we learned that she does NOT have lung cancer, the disease that killed her mother and maternal grandmother, we returned to my house.  On the way into the neighborhood, she asked, “Are we going to your house or my house?”   I just answered “Yes.”

That’s the wrong answer.  I should have said, “Your house.”  My answer was probably confusing to her, or shaming to her for forgetting she now lives with me.  The question was one she always asked after appointments.  Sometimes we would return to her assisted living apartment, while other times we would come to my house and hang out, have lunch, and play with my dog.

Now she lives in my house, and the master bedroom suite is set up in a way that is similar to her former apartment.  I’ve moved upstairs, cramming my bedroom furniture into a room a fraction of the size of the master.

The private aide I hired to help me take care of Mom finally convinced her to write Easter cards.  She proudly brought them to me, saying Mom would only write two, even though I bought her 12.

I glanced at the envelopes.  Her handwriting isn’t the neat cursive it used to be.  It sloped down the envelope at an angle.  But the most glaring issue was that the card addressed to my sister used my sister’s first name — but the last name of Mom’s sister.  The card addressed to my niece and nephew included their first names, but again, the last name of my mother’s sister.

Mom’s sister died in 2008.  Usually, Mom forgets that information.  She has been forgetting it for quite some time. Last week she remembered her sister’s birthday.  I couldn’t ascertain whether Mom remembered that she had passed away.  Perhaps she remembered this time.

Every now and then Mom has been confusing my sister with hers.  She remembers her sister as she was in the 1970s — a young married woman with two little children struggling financially.  I believe that is a better memory than the one of her laying in her casket, victim of a devastating disease at the age of 57.

My sister’s life is currently similar to our aunt’s in the 1970s — except it’s more than 40 years later.  She has two small children, and her husband was unemployed for a time, causing financial stress.  Their names also begin and end with the same letters and both are two syllables.  At first one might think she is simply misspeaking — but in reality she has the two women confused.

I hired two caregivers to help take care of Mom.  One is here on weekdays, the other weekends and one evening during the week.  Mom is very fond of the day aide; the evening/weekend CNA, not so much.  Every evening she asks at least five times, “Who is coming tomorrow? What time?”  Each time, the answer is the same.  When she wakes up in the morning, it’s “Is someone coming today?  What time will she get here?”

I was fortunate to be able to get the same physical therapy assistant to work with Mom at my house who helped her in assisted living.  She loves the man, and will walk through the house without complaining with him by her side.  When her caregivers or I encourage her to walk, she complains.  I finally realized why she likes him so much — she thinks he’s a guy from my hometown.  When another home health care staffer asked her if she knew him, she said, “I’ve known him all his life!  We used to go to church together!”

Mom also occasionally melds her two husbands into one person, attributing something one of them did or said to the other.  However, she can deftly tell you that she was 52 when my father died, and was single for 11 years before she remarried.  She can’t tell you how long ago her second husband died.  Sometimes she gets the month and year right, but rarely remembers in what city she resides.  She is clueless about the street address.  She will  wrack her brain for the name of the President of the United States (I think she wants to forget).   She also can remember a random comment someone said to her 50 years ago, but can’t remember what she ate for breakfast.

Many people think that Alzheimer’s and related dementia are all about memory.  Memories of past activities or people are not the only thing a dementia-afflicted brain forgets.

Mom’s physical symptoms of the disease have recently become more pronounced; namely, she eats a lot more than before.  She will say she’s not hungry, but then eat a complete meal and ask for more.  This is because she forgets she has eaten.  She also has become more incontinent.  This is because her brain forgets what it feels like to have to go to the bathroom. Conversely, sometimes she has to go to the bathroom all the time — this is because the urge to go is overwhelming and new for her, because she forgets what it feels like or how to “hold” it.

This is our new reality.  This is dementia.