About this blog

The journey with aging parents through their decline in health, both physical and mental, leads through unfamiliar territory for most people. We four women are on this arduous and sometimes lonely road. We do our best to love, care for, intercede, disagree with, and advocate for our elderly parents; at the same time, we are watching them slip away. Though we are not unique in our grief and pain, we’ve found little in print that speaks to our immediate experience. Thus, our blog is born to reach out to others both for their sake and, certainly, for our own.

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Finding my way back

After mom’s hip fracture in March of 2011 and move to the Skilled Facility, I wandered for some time, losing words, misplacing hopes, overestimating prognoses, and railing at for profit long term care organizations whose mission it is to imbue their aging residents with dignity and personalized care–and life. I avoided my sharing, here,  of grievances, disappointment, and hope, believing that the neglects and oversights would right themselves–that staff would start a new day with–All right, folks, let’s be sure that today–and everyday– we provide the best care and attention to every resident. No, the blank pages stared at me, reverberating in the frustrating environment of long term care. I found myself overcome in the wake of plummeting with mom into new stage of aging. My mouth agape in disbelief.

At the same time, I felt purposeful for a time, as my husband and I moved mom’s things out of her 500 sq ft assisted living apartment to storage. Her new digs, maybe 200 sq ft, allowed room for a petite desk and recliner. Gone is her maple high boy dresser, matching queen bed and night stand, captain’s chairs for visitors, antique entry table. The bed replaced by a hospital bed disguised in a generic beige geometric print bedspread–everybody has one just like it–sort of like school colors for old people.

I imagined that in a skilled facility, the presence of an RN 24 hrs a day meant that all of mom’s needs would be attended to–with accuracy and promptness. I imagined that after I mentioned that her fingernails were always dirty that staff would be sure to use the fingernail brush I provided when they bathed mom. I imagined that staff would ensure mom’s hearing aids were put in every morning when she was dressed. I imagined that when mom pulled the call light in the bathroom, staff would respond soon to help her.I also imagined that when I asked and provided a written request to check mom’s rattling and wheezing chest that the RN would, in fact, follow up.

What I know today is none of what I imagined.

My counselor reminds me of the AA prayer, a prayer I detest because it did not remedy the alcoholic family I grew up in, nor did the prayer of “wisdom” reside with us. Still, it is true that some things cannot be changed. Chronic neglect characterizes long term care facilities–not just this one where mom lives. Yet she lives, she is not waiting to die, but the care she receives often feels and looks that way.

Sunday when my husband and I arrived for a visit, mom was asleep on the toilet–obviously with no way to pull the call light, so after finding only two staff on the floor, five minutes later, one came to help. We greeted mom–no hearing aids. Staff did not know where the $6000.00 pair were. Eventually we located them–but the event violated daily care protocol–personal daily care–for this family member. This happens often.

Yesterday when I visited with her, staff changed her hearing aid batteries, or battery. One hearing aid had been without a battery for who knows how long. This occurs frequently. (Later, I will share the research about hearing and cognition.)

This is not to say that caring staff do not work on mom’s floor. Rather, staffing is woefully, criminally lacking. The fact that each resident–20 or so–pays $7000-$8000 per month brutally compounds the moral and ethical betrayal of nursing home residents and their families, along with the medical community who seek to do no harm.

We are fortunate, however, that mom is an optimist. Despite her severe dementia, she reminds us that she feels safe, still enjoys her meals, and looks forward to reading and solving crossword puzzles everyday. Gratefully, she does not see what I see. In fact, she wonders sometimes at our concern, “Why is everyone asking me if I’m OK? What is there to worry about?”

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Showing Off

Recently, I sat with Mom as she ate lunch. The new resident, M., sat down next to me. I was enjoying the ’50s music that was playing: Rock Around the Clock, Blueberry Hill, Yakety Yak, and I began to croon: “Ah got mah thri-i-il ON Blueberry Hi-il,” “I’m gonna ROCK. AROUND. THE CLOCK. TONIGHT,” “Yakety yak–DON’T TALK BACK!” M. looked at me with disgust. “You’re showing off,” she said reprovingly. Then, stern eyes on me, she announced my diagnosis: “You’re a show-off!” Continue reading

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Hi, Darlin’!

Mom, as usual, is on her bed, facing the wall, wrapped in a soft green blanket I gave her for Christmas a couple of years ago. I touch her shoulder and say softly, “Hi, Mom.” She turns, and recognition and love sweep across her face. “Hi, darlin’.” At these words, I am wrapped in her love and deep knowing of Me. Kathy. Specifically. I bend over and we kiss and wrap our arms around each other. “It’s so good to see you,” Mom says, and hugs me tighter. The power of love, and the place it has in our embrace must give off a glow, enough to light the small, darkened, cozy room that is hers. I sit in the chair near her bed, and hold her warm hand. We look at each other, deep into each other’s eyes. There IS joy amid this painful time, and only by my being there often can I stumble on a moment such as this one. Continue reading

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Almost Mom

I peeked into Mom’s room today, and she was sitting in her chair–a surprise. She saw me, and stuck her hand out, fingers spread, in a characteristic way. Just a single movement–out and back–and it looked so Mom-like that my heart leapt up. It’s Mom! my brain enthused, which is understandable when compared to some days when she doesn’t act like “her” at all. It’s a lovely COOLER day here, after weeks of stifling heat and humidity. “Let’s get outside,” I said, and we moved her into her wheelchair, and I rolled her out the door. I could have given her her walker, and maybe I should have, but Dear Companion (who is gone until Aug 23–wahhhh!) reported that Mom had such trouble walking in yesterday that she feared Mom was having a stroke. I think the heat is debilitating to Mom, so she might have been OK today, but I didn’t want to take a chance. Continue reading

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Napping with Mom

Yesterday I went out to Bickford after church, and brought both Mom and Dad some of the wonderful honeydew melon I got at Kroger’s. A sweet honeydew is hard to find, and this one is outstanding. I cut some chunks up, and put them in ziplock bags with plastic forks. When I entered the memory care area, the aide-in-charge told me that Mom was sleeping. Often Mom and I have the best visits when she is in bed. We hold hands, exchange loving looks and say little. It’s as if we are underwater, and our speech is garbled by the dense water between us. But we see each other, and love each other, and the blocks to our full communication don’t matter. Continue reading

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Firing–again

So Friday I went out to see Mom, who was sitting and eating lunch. I noticed that her private duty aide was trying to make the DVD player work. This player is attached to the TV in the common living room of the memory care area. I thought, optimistically, that perhaps the aide had an animal video of some sort to play for Mom, who enjoys such film, especially when dogs are involved. After a great deal of fiddling, and three people working on the effort, the DVD worked! And the aide put on…..RED RIDING HOOD, a horror film of some years ago. In memory care, with fragile elderly people in the room, without asking anyone, Aide put on this incredibly inappropriate movie and plopped down to watch it. Continue reading

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“Mom!”

I am home from a great visit to Philadelphia, and I want to do it all over again! It was fun to be there for Father’s Day (Andrew got LOTS of books) and go out brunching Sunday in the outdoors–my stuffed French toast would have served all 4 of us–and take lots of pictures of Emma. She taught herself to hopscotch, even getting the one-leg hop right most of the time, we played lots of dolls, went to the Farmer’s Market, had breakfast most mornings at the coffee shop, and did lots of painting and doodling. Oh yeah–we also had some ice cream! Continue reading

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“I like it in here”

Mom’s words on Sunday are the title of this post which made me as happy as you can well imagine. She was sitting on a couch in Mary B’s (what Memory Care is called at Bickford, and so shall I) dozing when I came in. I sat down beside her, and as always, she was SO happy to see me. Hugs and kisses ensued, which I returned with love. This is one of the special gifts of this phase of Mom’s life. Monday I came in the room, and she was lying down, as she almost always is. She patted the bed, indicating I should lie down with her. So I did, putting my arm around her, and she nestled into my embrace, head on my shoulder. Mom lay that way, her arm across me, as I visited with her dear companion. It was peaceful and pleasant for 20 minutes or so, and then we needed to move on to something else. As we sat up she patted my breast; “this is nice,” she said. “It’s soft,” I replied. I was reminded of the delight I felt when my children lay next to me, snuggling, safe and sound with me; there are more and more reminders Mom’s increasingly childlike. Continue reading

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The new room

Wow. It’s been a long time since I posted anything. Be assured that Mom and Dad are both doing fine. Since the last entry, we selected a new room; it looks out to the small courtyard especially for the Memory Care area. LOTS of flowers meet the eye, thanks to a resident across the way.The room is even SMALLER, but we took out some furniture, listened to my master room-organizer friend, T., and really it looks so much more cozy and pleasant than the one we abandoned. I was never satisfied with the last room–it always looked like we needed to do something to finish moving in, but this new room makes ME feel peaceful, and I hope Mom, too. Every time I ask her if she likes the new room, she firmly says, “Yes.” Good. Dad is also well, with a fresh haircut, and napping a lot of the time. He enjoys all the events (except Bingo!), especially ice cream socials. Continue reading

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Following through

It makes my heart shrivel, a little, to think of moving Mom again. I have thought about WHY I am feeling this way, and it appears that it is mostly because I fear a (non-existant) committee reviewing this decision and stamping it “TOO SOON–YOU HAVEN’T DONE ENOUGH!” So with that the (false) reason, I have new strength to follow through on this move. Tomorrow Mom’s favorite caregiver and I will take her for a visit to the new room, and try to “sell” the new room: the room she’s in (the one we moved her to recently) has not worked out well in part because she’s looking at a parking lot. The new room has a view of trees and fields, and we can move her bird feeder close to the window so that she can see the birds better. My guess is that she will say OK, and try to cooperate. The last visit, as we moved her, I asked her how she was doing, and she said, “I know I have to stand this, and so I will.” She is very brave even now, and trying so hard to do the right thing AS ALWAYS. Continue reading

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