Parental Journal 101 from Planet Elderly: Naming Mom’s Toilet and Other Realities of Dementia

Morning, June 17, 2019

For the past several months, Mom has been coasting along quite well in the Woods Central neighborhood of Lenoir Woods.

Walker?  What Walker? 

Mom is the only resident who does not use a wheelchair, although she has one for getting to activities in other neighborhoods.  She uses a walker, but always needs to be reminded to use it…AND…she requires guidance using it.  Staff regularly use a safety belt to guide her as she uses it.  When I walk her to different areas, I don’t use the safety belt.  I probably should, but I keep my hand on her back with one hand and help her steer with the other hand.

She can’t steer very well because she thinks she has to carry it over doorways and over areas that change from hard flooring to carpet.  If I accompany her to her room to use the toilet, she is not able to follow directions when I say, for example, “Ok Mom, we’re going to take a left to go down this hall.”  She will turn right and I will gently guide her to the left.

Another obstacle she has with the walker is her feet.  She walks with both feet facing outward, which then interferes with the walker legs being able to glide smoothly.  She can’t figure out why she keeps getting “stuck” and believes there is something wrong with the walker.

Honestly, I am amazed that she hasn’t had several tumbles and a broken hip, but that’s because she is closely watched and is not left to fend for herself with the walker.

And when it’s time to use the walker to go from the bed to the bathroom first thing in the morning…or from the bathroom to the TV areas after getting ready in the morning…or from the recliner to the dining area…she’s often surprised to be told she needs to use the walker.  A walker?  Like it’s a new concept never before mentioned.

Thankfully, she is pretty compliant 90 percent of the time.  If she is in a bad mood due to sun downing confusion, I have seen her push the walker away and attempt to take off on her own.  With one such situation, she fell onto the carpet, was thoroughly checked, and was fine.  I haven’t seen her push it away since that incident.

Naming Mom’s Toilet

When I’m visiting and Mom has to go to the bathroom, I take her myself.  We’re still a good team with this, regardless of whether we are dealing with Number One or Number Two.

One day this past spring we were having a fun visit…just chatting and laughing about stuff.  She was in a good mood and very lucid.  Suddenly she looked at me and said, “I gotta go poop!  Really bad!”

“Okay, I’ll help you,” I said.  We locked arms so I could assist her in standing up from the recliner, and once she was vertical and fairly steady, we made our way toward her room with her walker.

It takes a while to walk to her room and she is always surprised and distressed that we just can’t use any toilet close by.

“I don’t think I’m going to make it,” she said.

“Well, don’t worry.  We can clean up anything and put on a new outfit.”

But we made it, and as we turned into her bathroom I said, “Hey, Mom.  You should give your toilet a name!  It’s one of your best friends.”

She laughed and said, “Ok, I’ll call it Jeanette.”

Not wanting to have her toilet named after me, I offered another suggestion as she earnestly shuffled toward the toilet seat.  “How about naming it after your sister?”

By this time, we were both buckled over with silliness and she had the additional emergency of having to poop N.O.W.

“Ok,” she said.  “We’ll call her Marty.”  And with that, she plopped onto the toilet seat just in time.  No change of outfit needed.

Meet Marty:

mom toilet 050219

 

The Great Eavesdropper 

Mom’s favorite activity is eavesdropping, and she is still quite good at it.

There may be all kinds of things going on…an episode of “Golden Girls,” a chair exercise activity, residents getting their blood pressure checked and their meds, the guy on the riding floor cleaner swooping by…but whatever is going on, Mom can still zero in a conversations.

Her hearing is superb, thank goodness, because eavesdropping is one of her major forms of entertainment.

We might be sitting together, looking at a magazine with me commenting about the content, and Mom will zoom in on what other people are saying.

KAREN

“He wants Karen.  He keeps calling her name.”

“Yes, that’s our new neighbor.  Karen is his wife and she isn’t hear right now.”

“Oh. Doesn’t he know that?”

“Well, he can’t remember that she isn’t here, so he keeps calling for her.”

“Oh.”

WALKING

Last week a visitor was talking to me about a vacation and going out west. I mentioned that I had heard that the western states were quite beautiful…that a friend visited the big sky country of Montana and liked it.

Mom looked at me and said, “Well, do you think we could go to Montana together?”

“I’m not sure, Mom.  When people visit Montana, they have to do a lot of walking because there are wide open spaces and mountains….”

“Well, I can walk!  I walk all the time around here!”

“Okay, well…we’ll think about it.”

Then she rolled her eyes at me.

BIKING

Mom was listening to some of us talk about biking.  I recently tried riding my women’s size bike and discovered that my center of gravity had moved to another universe.  I took three very gentle, graceful tumbles; then decided to sell the bike.

When Mom heard me talking about selling my bike, she frowned.

“What’s the matter?” I asked.

“Well, you could give it to me.  I bike.”

“You still ride a bicycle?”

“Yes, all the time…and I’m good at it.  I don’t fall.”

“Oh…okay.  I had not idea you still rode a bike,” I said.

“Well, I do!”

 

What To Do About That Hair?

Mom has always worn her hair short and layered.  She would set it in sponge rollers and then wrap a scarf around it.  She can’t use rollers anymore and never evens mentions them.

Her hair is also quite thin on top and it has been for decades.  Her scalp can easily be seen, but she has never realized that.  She just thinks she has “thinning hair.”

Since arriving in her present community, she has let her hair grow.  Suddenly, she does not want a haircut.  She likes it longer.

I made a hair appointment for her one time here at Lenoir Woods, but I was not there to see the results.  As expected, though, there wasn’t a trace of any hairdo when I saw her the next day.  I just saw the almost shoulder length, somewhat frizzy, straight, white hair that gave her a kind of witch look.  So I made a note to bring in some hair bands to try putting her hair in a ponytail.  At least that would keep it somewhat neat.

To my surprise and delight, I walked in to visit Mom last week, and at first I could not find her.  Then I saw her sitting in a recliner, sporting a high ponytail, and enjoying a Netflix movie.

When I walked over, I said, “Hi Mom.  You have a ponytail!”

“I do?”  She reached up to touch the top of her head.

“Oh, yeah!  And it looks so cute!  Plus I see someone painted your fingernails a pretty bright pink.”

She lifted her hands out to see.  “They look good, don’t they.  I like the color.  I’m getting used to it.”

She let me take a picture of her new look while she watched the ending of  “Mama Mia”:

20190613_112354

All my gal pals gave this photo a thumbs up because she looked so relaxed and content.

 

Mom and KK

Unless I am able to bring Pearl’s great grandchildren for a visit, I am the only person who visits her.  Needless to say, she is so delighted when I  bring one of the kids, ages 14, 9, and 5.

The two older ones live in another nearby city so I don’t see them very often, but the youngest one (“KK”) lives here in Columbia and is happy to go see “Grandma Pearl.”  We usually bring drawing supplies.

Mom may not know their names or their ages, but she knows they are family and she is so happy with their visits.

Mom and KK 061619

Mom with Shamyra (a super angel aide) and KK.

 

Observations

Mom has been in a great place during recent visits these past couple weeks.  She is lucid, can respond to jokes and joke back, and engage in conversations with others.

She is now on a half-pill of anti-anxiety medicine, usually given at or shortly after lunch.  Her sun downing often occurs in the early afternoon, and this eases the anxiety a bit.

Her appetite is good in general, but I notice that when I sit with her at lunch, she often does not eat everything.  Then again, there are some days where her plate is polished.

She often does not know what the items on her plate are or she claims she didn’t order what was given to her.

Lately, she attempts to eat her dinner roll with a knife and fork…and pieces of meat or vegetables with her fingers.  Sometimes she will dip a forkful of cake in her cup of tea.

Her weight is about 107 and that is fine for her.  She is aware that she has always been thin and sometimes brags that she can eat anything.  I surprised her with a root beer float one evening, and she finished it.

She does not get physical therapy because she doesn’t like it and is often rude toward therapists.  She is unable to learn new things, so she and I participate in chair exercises in the living room area when offered.

I am quite surprised at her lucidity recently.  Not long ago she would have days when she could not make a clear sentence…the words just would know show up.  For the past few weeks she has sometimes not been able to find a word or two, but otherwise has had no problem expressing herself during my visits.

She rolled out of bed a few nights ago.  It was 3 a.m.  They checked her over, she was fine, so they decided to wait until I arrived to let me know.  “So.  You rolled out of bed last night, huh?” I said.   “I did?” she asked.   Later she tried to cover why it happened:  “Well, I saw this other fella roll out of bed, so I did the same thing.”    Sure, Mom.

General health seems fine.  No current concerns with blood pressure or heart rate.  She should be drinking more water.  And her butt sometimes hurts because, “I’m sitting too much.”  If I take her for some walks outside or around the building, I’ll be sure to use the the safety belt.

FORTUNATE

I am quite fortunate that my mother knows who I am, participates in our discussions, enjoys singing along to music, is in fairly good health, hasn’t had any serious falls or illnesses, eats fairly well, and sees a lot of humor in living to one’s elder years.

I have not doubt she will be enjoying her 93rd birthday this coming August 16.

SAD

As fortunate as we are, I am also often quite sad.  I live with clinical depression and have managed quite well over the past few years…getting Mom moved here, selling her house, and enjoying time with her in memory care assisted living.  Now she is in a skilled nursing neighborhood and is the highest functioning patient on board.

We have had some neighbors die in recent weeks.  Mom is not aware, but I am.  New neighbors have moved in, and the daily schedule goes on.

My difficulties with depression suddenly became more pronounced a couple of months ago.  After discussions with my psychologist and my primary care physician, I have done two things.  First, I am taking an additional medicine for depression after decades of taking only one kind.

Second, I am visiting Mom four days a week instead of six or seven.  I see her on Tuesdays, Thursdays, Saturdays, and Sundays.  This gives me more time to focus on things I enjoy doing by myself, with friends, or with grandchildren.  I now have days that are not overshadowed with the ravages of advanced aging and the emptiness of death.

At first I was anxious about being away from Mom so often, but she has no memory of when I’m there and when I am not, and she is doing well with my new schedule.  She sees me, smiles, and often says, “Oh, it’s so good to see you!”

I am also doing well with the new schedule.  And I am planning a road trip with some gal pals:  New Mexico in October.  Four of us are going, and even though I might not be able to go if Mom is in the hospital or suddenly quite ill, at least there is a plan to take a real vacation.  Plans are good.  Plans are hopeful.  Plans can bring joyful anticipation.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Parental Journal 100 from Planet Elderly: Mom Was My Valentine and It Was the Best Valentine’s Day Ever

February 20, 2019

The planned Valentine’s Day party at Mom’s community included the C Rock City Band from here in Columbia.  They specialize in classic hits from the 60s and 70s.

And this party wasn’t for the whole Lenoir Woods compound of independent, assisted living, and skilled nursing residents.  It was set up mostly for the skilled nursing residents from three neighborhoods, although there might have been others who stopped by.

What can I say?  It was a blast.

I remember driving there around 1 p.m. wondering how Mom would be.  Her afternoons can be difficult due to sundowning, and I’m told that behavior sometimes starts right after lunch.  When I walked in, she smiled and was just fine.  I kissed her and asked if she would be my Valentine; she giggled and said yes.  Then she asked if I would be hers.

V Day 2019 02

The weekday daytime staff at Mom’s neighborhood.  A great crew!

 

Holding Hands and Smooching in Your 90s?  Why Not?

Word about a party was out and some residents were looking forward to attending, especially Mom’s friend “L” who is 93.

A couple of months ago I was informed that Mom and “L” were developing a friendship.  I was told because the friendship sometimes included holding hands and smooching, and the facility needed to inform me in case I had any concerns. I didn’t.

In fact, “L” is a lot of fun.  I’m not sure why he lives in Mom’s neighborhood.  Not everyone there has dementia so maybe he has other health issues.  He is occasionally forgetful, like remembering what he selected for lunch or what college he attended.

“L” is witty, jokes around, worries about his neighbors, and freely shares commentary about the staff and the food.  He also knows when all the activities are scheduled and prides himself on enjoying a hearty breakfast every day.  He watches the news, enjoys the company of others, and apparently still likes the ladies.

For a while I thought that if Mom kissed “L,” her memory is so shot that she probably would not remember doing so ten minutes later.  Wrong.

One morning a week or so ago, I asked Mom if she’d like to brush her teeth.  She said yes and scrubbed those teeth quite well for a while.  Then when we were sitting in the living room area before lunch, “L” rolled over in his wheel chair to visit.  I explained that Mom had just finished brushing her teeth, and she then proceeded to say, “See!  Now you can kiss me.”  They both chuckled and went on to flirt unabashedly for another 10 minutes.

I just sat there with my eyes wide open thinking, “Damn.  The girl’s still got it.”

Lunch Time Gatherings

When I visit Mom, I arrive before lunch. I sit and chat with her and her three lunch mates: “L,” “M,” and “P.”   All three engage in interesting conversations and enjoy teasing each other.  I sort of keep the conversation going and we often have a lot of laughs.  None of the three has the kind of cognitive/behavioral issues Mom has with her dementia, but she does well listening to the conversations and sometimes chimes in with a witty comment here and there.

They don’t say a word as she tries to eat her dinner roll with a knife and fork, puts some mashed potatoes into her tossed salad, or attempts to pick up peas with her knife.  Well, “L” sometimes does. “What are you doing that for?” he’ll say.  Mom just gives him her annoyed look and tells him, “Never mind.”

The Valentine’s Day Party

Mom and I walked down the hall to another neighborhood where the band was setting up for the party.  We chose to sit in soft chairs near the band rather than be boxed in at one of the long tables.  Before the band started playing, staff passed around cookies and beverages.

V Day 2019 01

 

The band was loud, and that’s good for the those who can’t hear well, but when they began playing, Mom was startled.  She adjusted quickly and in no time she was tapping her feet.

There was a nice open area in front of the band, so when the second song started, I asked Mom if she wanted to dance.  She did. I helped her up and we held hands as we moved our feet back and forth.  She was all smiles.  So was I.  It was wonderful to connect with her in that way and it’s a memory I will always cherish.

At the same time, our friend Peggy rolled her husband, Tom (one of Mom’s neighbors), onto the dance floor as she usually does if there’s a band playing.  She whirled and twirled him with such love and care.  They have been dancing together since they were 16, and a wheel chair was not going to stop them. Tom enjoyed every minute, clapping to the beat as Peggy steered him back and forth, around to the left, then around to the right.

In no time, others joined us.  Staff assisted residents, spouses guided spouses, and adult children led with parents.

The Power of Music

Watching folks enjoy the music at the party was a testament to the power music has on all of us.  Lots of folks at the party were in wheel chairs or were very limited in their ability to walk without assistance,; yet hands clapped, shoulders moved up and down, people swayed, feet tapped, and smiles lit the room.

Then there was Mr. and Mrs. Wonderful.  Well, that’s what I call them.  The wife probably lives in an independent living apartment or maybe even in her own house.  The husband is a resident.  They knew Peggy and Tom and sat next to them.  They watched as Peggy took Tom out onto the dance floor again and again.  Mrs. Wonderful seemed to want to do the same for her husband; however, she gestured to Peggy that she had leg problems.

But when the love ballad “Unchained Melody” started up, Mrs. Wonderful positioned herself in front of her husband, reached behind him to grab his safety belt, and slowly pulled him up to a standing position even though she was half his size.  They stood there holding on to each other and swayed.

V Day 2019 05

Well, my heart just melted, and I wept Continue reading

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Parental Journal 99 from Planet Elderly: Mom Now Resides in a Skilled Nursing Community

The journey with dementia moves onward, and during the past couple of months Mom has fallen a few times.  Watching her gait over the summer, I could see that fall episodes would start in the near future. In September, she willingly agreed to try using a walker and said she felt more secure.  Trouble was, she didn’t remember to use it, so getting around started becoming rather precarious.

First Medical Adventure

I received a call saying she was shaking and having trouble communicating.  She was taken to the ER and it was determined she had an infection…maybe sepsis…but they weren’t sure. She was admitted and given two varieties of big gun antibiotics intravenously.

I stayed with her 12 to 14 hours each day but needed to be home to sleep. She was moved a few times to different rooms, and there was never anything other than a hardback chair for me to sit in.  Fortunately, the hospital could monitor her via video and using a sound alarm built into the bed.  It would go off any time she tried to get out of bed.  That gave me some peace of mind when I went home to sleep.

For Mom, she was just tired a lot, but her breathing was monitored as were her other vital signs.  She was put on oxygen because they suspected pneumonia.  The biggest challenge was going to the bathroom.  She needed assistance but didn’t think she did.  A few times assistance took a long time coming and she found her self in a puddle of urine and feces.  I had to advocate quite a bit.  When I told some physical therapists about the puddle, they were horrified something like that could happen in their hospital.  No shit.  I’m sure it happens often with the aged old who are hospitalized and cannot speak or advocate for themselves.

Mom had several tests done (Why not?  Medicare was paying for it, right?), and several rather fast-moving rides to those tests by young folks who had no idea she had dementia and would scare easily.  She didn’t scream or cry out, but her eyes got big.  She rated the food at this hospital as “lousy.” I would agree.  She didn’t eat much and lost some weight.

From the hospital she was sent to a rehab skilled nursing community to receive physical and occupational therapy.  She was not a happy camper, but after several days she was glad to be able to “go home” to her regular memory care assisted living community where she was welcomed with open arms.

mom and me shoes

(Chilling out during her first visit to the rehab center)

Second Medical Adventure

While roaming around without the walker one evening, Mom fell and was in a lot of pain.  I met her at the ER and it was determined that she broke her shoulder, a common kind of break for the aged old.

The ER doctor, who seemed in a rush because “I’m the only physician here,” he said, seemed attentive enough, but he wanted to send Mom “home” with some pain pills and a brace to keep her arm stable.  We were told it would take about 6 weeks to heal.  If it didn’t heal, there was an operation involving putting a rod in her arm, “but due to her age….”  I just nodded my head.

Because it was 3 a.m., they found a room for her to sleep in overnight and I was able to go home to sleep.

The next day the rehab community picked her up and brought her back for another visit and round of therapies.  She was in terrible pain.

She was at the rehab community only a couple of days.  As I watched how she was watched and assisted, and as I looked around the somewhat dark and dingy atmosphere due to the community being located in a basement area of a larger senior community, I just wanted something better for Mom.

Proactive Me

It’s my nature to look at problems and situations and try to plan options.  With two recent hospital adventures, it seemed clear to me that Mom was headed toward needing a skilled nursing facility as her permanent home.

I found it to be very stressful to have an incident lead to an ER visit, which led to time in the hospital, which then led to time at a rehab community, which maybe would lead to going back to her home community only to know that the same scenario would happen again and again.

I drove over to a new skilled nursing care center at Lenoir Woods, a Luther Senior Services community that has been in Columbia for several decades.  In recent years they have built new independent living apartments, torn down the old care center and built a new one with three skilled nursing facilities, and over time have stepped up their game to match their mission in helping elders live better lives as they progress through the aging process.  They are highly rated and have a good reputation locally.

My idea was to get Mom on the waiting list.  I just walked in and was able to speak  with the advisor who hadn’t yet started her busy day.  I told her about Mom’s background and what had been happening.  Turned out there was an opening, and Mom was moved in a few days later.

Third Medical Adventure

This one I missed because I did not hear my cell phone ring three nights ago at 11 p.m.

I did wake at 3:30 and saw that I had a voice message.  Checked that and was told to call.  When I did, I learned that at about 11 p.m. Mom was found lying on her back next to her bed and that she was bleeding at the back of her head.

They had her taken to the ER where she was examined, given two CT scans around midnight, had three staples put into the back of her head, and sent back to the care center.

“They didn’t find anything serious and sent her back.  She is fine now,” I was told.

I made some coffee, listened to NPR news for a while, and had a nap.  I woke up and got myself ready to go check in on her, not sure what to expect but having visions of her pain and misery from previous medical adventures.

When I arrived, a man was leading a program for the crowd gathered in the living room area and there was Mom, seated in a recliner, wide awake, participating with a smile, and when she saw me, she said, “Oh, hi!  How you doin’?”  No word about pain, about being tired; no memory of her latest adventure.

Eventually I did say, “I heard you were at the ER last night.”  She looked at me as if she didn’t believe me.  “Yeah, I’m told you fell and had three staples put in the back of your head.”  Her eyes shifted left to right.  “I hope they were nice to you.”

“Oh, yes.  Theyt were nice.  They were very nice.”  And then she started feeling the back of her head to check on the staples.

And Here We Are:  Observations as of Thanksgiving Weekend 2018

*Mom has been eating less these past few months.  We had a fabulous Thanksgiving meal yesterday at her community, but she only nibbled at it.  I cleaned my plate and ate a few bites of hers.

*She weighs 109 now.   When I moved her to Missouri she weighed about 103 and her doctor wanted her to gain some weight.  While at her first community, she ate well and peaked at 134 or so.  That was a bit much a bit fast, but then she started eating less this past spring.

*In addition to lessening food intake, her taste buds seem to be changing and she doesn’t recognize food very well.  She was unsure about whether she liked the homemade rolls served at every meal.  A couple of weeks ago, that was a favorite item.

*She feeds herself, but has difficulty reading and selecting from the small lunch menu that offers two main items and a variety of vegetables and sides.  If left to herself, she may only select “mashed potatoes and gravy.”  They are yummy…and made with real potatoes.  She never says no to the dessert cart when it stops by her table.  She rarely finishes dessert, but she enjoys a few bites.

*She has difficulty remembering to use the walker and how to use it.  She struggles with it, often trying to carry it or use it backwards.  At least she is still getting around, although she put staff in a panic the other day when they found her walking without the walker.  She cannot learn new things and that is sad to observe.

*She is having more difficulty expressing herself.  She will point and start a sentence but cannot find words to state her question or concern.  She is aware of this difficulty and it frustrates her.

*She responds quickly and happily to anyone who walks by and says, “Hi, Pearl!”

*Swallowing pills is more of a challenge.

*She has her own wheelchair now for any time she wants to use it and for the future.  When I told her we were buying one, she said, “Good.  And then you can use it, too.”  Yep.

*At lunch she sits with three other folks who are quite verbal; not everyone there has dementia.  I enjoy sitting with them and chatting away.  We have a lot of laughs and Mom enjoys it.

*Mom’s short-term memory is kaput. She tries to cover up with “oh yeah,” but it seems clear that she cannot retain what recently happened or what was recently said.

*After Thanksgiving dinner yesterday, she started to sundown.  She kept asking what I was going to do and what she is supposed to do.  She could not remember that she has a room there, so we walked to the room and I showed her several of her things…side table, recliner, favorite knickknack, bathroom.  After returning to the loveseat in the living room, she asked again.  She had no memory of our walk down to her room.  We went again.  “I need to know what I’m supposed to be doing,” she said over and over.  We went back to her room and she decided it would be okay to sit in the recliner and watch The Hallmark Channel.  She remembered that channel.

Mom ER visit nov 2017 cracked rib

(one of her ER visits)

Each day when I am with her, I try to take in her presence…make her smile…share some laughs.  If she is agitated or in pain, I just sit with her and let her talk…acknowledge her difficulties.  And I am sad.  Going through this long grieving process is difficult, but for now, we can still talk to each other and have some golden moments.  I am grateful for her lucid times and I am grateful we are still creating memories.

 

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Parental Journal 98 from Planet Elderly: “I Need to Find Myself”

Tues. July 31, 2018

Mom and I have been coasting along with a regular schedule for the past year and four months since she moved into assisted living memory care.

Mom and me Shelter Gardens spring 2018

Shelter Gardens outing Spring 2018

 

Our current schedule includes daily visits except for Mondays.  That is my “work” day.  Essentially it’s my day off.  And it was highly recommended by my psychologist and group of gal pals.

Admittedly, it’s been wonderful to wake up each Monday morning and know that I have the whole day to myself.

Dual Downsizing

This past March I decided to move from a rental house to a duplex located next door to a friend. The house was nice, but I did not have a sense of community.  Apparently, I’m more socially oriented than I thought I was.

The duplex is a bit smaller than the house, 30 years newer, it’s located on a quiet cul-de-sac on the very western edge of the city with a diverse population,  and I absolutely love it. I call it my Independent Living Nest.  This is where I plan to stay until such time that I either die or can no longer live independently.

At the same time I was moving, it was recommended that Mom move to a private single room.  She had been in a double room, but in anticipation of more residents eventually moving in, the private single was agreed on–even by Mom.

We spent a lot of time joking about downsizing at the same time.  I hoped it would ease the transition for her.  Overall, she did quite well and thinks it’s cozy.  The main issue is that she can’t remember where it is.

Changes

I have read that one characteristic of vascular dementia is that changes seem to happen in “steps” rather than a gradual decline. I think Mom is currently going through her second step of changes since arriving here March 31, 2017.

*She will experience bouts of feeling okay with bouts of anger and unhappiness, which she calls “being crabby.”  Her emotional quality of life is failing, and we will be visiting with her doctor to have a urinary tract infection test done…and to propose that a low dosage antidepressant be tried to help take the edge off her bouts of crying, anger and unrest.

*Her short-term memory is failing even more.  She cannot remember what happened ten minutes ago.  During a recent visit with two of her great-grandchildren, the 14-year-old great-granddaughter was sitting at a table with us. We greeted Mom about ten minutes earlier when we arrived.  Mom turned to me and asked, “Do you know who that is?”  I explained and she responded with “Oh yeah…She is so pretty.”

LaEabha and Mom Spring 2018  With oldest great-grandchild

 

Mom and Kaylin Summer 2018  With youngest great-grandchild

She is often found napping in her old room.  When she wakes up and goes into the bathroom there she becomes upset.  She thinks someone has stolen all her stuff.  She is directed to her new room and finds familiar things, especially the bed comforter that she loves.

*I am told that she wanders and more recently has set off the door alarm a few times.  She has joined that club now, apparently.

*She has had two altercations with the same neighbor when Mom attempted to slap or actually slapped her.  She has always had a short fuse.  I know.  Throughout my childhood and adolescence I was afraid of my mother’s temper.  I know she has also been extremely rude and unkind to staff.  She tells me sometimes.  At other times, staff have shared that “she brought me to tears.”  Kudos to all the staff who work with the elderly, especially those elders living with dementia.  Some residents are quite sweet and obliging.  Then there are spitfires like Mom who shoots dagger of hate at anyone who suggests she take a shower or spa bath.

*Although she still goes to the bathroom by herself, accidents happen more often.  Often she is not able to tell if she has soaked a disposable panty or soiled herself.  Staff are cleaning up more messes now.  That’s one reason why they want her to shower or bathe more often–to make sure she is nice and clean.  When they suggest a shower or bath, she interprets that as as meaning “she stinks” and it pisses her off.  “They should just tell me I smell,” she will snarl.

*But who resents “being told what to do all the time”?  Mom.  She has been fiercely independent her whole life, even when married.  Now she needs more assistance. In recent weeks, she acknowledges that fact, sometimes agreeably; sometimes with a scowl. I often try to put myself in her situation.  How would I react?  In all honesty, once I could no longer sit through a movie, follow the story line in a book,  or be able to work a computer, table, or radio, I, too, would probably be a miserable bitch and occasionally take it out on others.  In addition to not always appreciating staff assistance, she will complain about not liking “all the busy bodies here.”

*She is losing a bit of weight; does not like to eat if she is upset or angry.

What Stays Pretty Much the Same

*Coffee and morning chat time with others when I come to visit

*Going for walks and engaging in activities most of the timeMom activity 2018

*Loving naps

*Listening to other gal neighbors and me when we tell stories and share tips on getting old…and laughing loudly together

*Our outings to doctor appointments followed by lunch out…usually a cheeseburger, sometimes a taco or fried fish filet…or a craving for a root beer float:Mom rootbeer float July 2018

*Her appreciation of her best staff friend, Mary Kaye, who continuously weathers all the up’s and down’s of residents’ realities with dementia.  She is a pro…and a saint.

 

Awareness

After a recent refusal to take a bath, Mom shuffled off to her old room and laid down on a bed.  I joined her and just sat in a chair next to her.  She did not talk a lot, but she was honest.  “I am so angry most of the time.”  “I hate my life.”  “Don’t be surprised if you come to visit sometime and I’m not here.”  “I should find another place to live.”

After a long silence, she gazed at the doorway and said, “I need to find myself.  I don’t know if I can, but I need to try to find myself.”  I didn’t respond.  I was struck by the profound reality she was expressing as a person who is so often confused because she lives with dementia.

Slowly I mentioned how she has told me she likes how clean it is here.  “Yes, it is very clean.”  Then I mentioned how she has told me that she thinks the staff are very nice.  “Yes, they are nice…even when I’m crabby.”  And the food?  “Yes, the food is good.”  And you have nice neighbors.  “Yes…well, most of them.”

Then I moved to the bed and sat next to her.  We hugged and she told me, “I love you. I know you are doing a lot for me and I appreciate it.”

“That’s okay.  Look at all you did for me over the years.”  We laughed

“Yes, but you are happier than I am.  Sometimes I’m jealous and wish I was as happy as you.”

Mom 073118

Flowers from Betsy’s garden  July 2018

 

 

 

 

 

 

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Parental Journal 97 from Planet Elderly – There’s a Sadness Settling In

January 8, 2018 afternoon

Mom has been at her assisted living memory care community for almost 10 months now.  I am so fortunate that, although difficult in the first few months, she acclimated better than I thought.  I owe a lot to the staff at The Arbors at Mill Creek Village.  They have always been ready to listen to her when she was confused or upset and to reassure her.  They understand that when she is “cranky” (her word) or “difficult” (my word), it is part of the disease.

Except for Mondays, I continue to visit every morning and enjoy coffee with Mom and her neighbors.  Some mornings are rather quiet; other mornings a topic comes up and we gab and laugh.    images (2)

But I’m noticing changes that indicate Mom’s vascular dementia is going south a notch, if not more.

Washing Depends

She will sometimes take soiled Depends and try to wash them out in the sink.  When I visited a few days ago she told me not to come in.  She had a mess to clean up.  I had an idea of what it was, but I left to visit with other friends and returned a little later.  She was trying to wash a pair of Depends, but I also noticed feces smeared on the shower curtain and on the toilet bowl.

“Oh, those panties, Mom…the great thing about them is that if they get wet or soiled, we just throw them away.  Nice, huh?”  Then she remembers and I help her put it in the trash and clean up shreds of paper lining off the floor.  I keep a container of disinfecting wipes in her bathroom so that I can wipe soiled areas.  She is not even aware of soiled areas, but she always thanks me for helping.

Multiple Layers

It used to be she wore two pairs of knee hi nylon stockings.  And because she likes to be very warm and toasty, it is not unusual for her to be wearing three or four tops of one kind or another…sometimes more! More recently I am noticing multiple bras on occasion and multiple pairs of pants.  This morning I noticed that she had two pair of pants on.  She was mystified.  I asked if she wanted both on and she said no.  When she took one pair off, I noticed that the seat area was a bit damp.  “Oh, this feels a little damp.  How about if we just put a fresh pair of slacks on?” I asked.  When she took off the second pair of slacks I saw that she had her Depends on inside out, thus the reason for wet pants.

She is increasingly willing to be assisted with dressing by me…and I hope by staff that see the need and offer.  I gave her a fresh Depends, clean slacks, and asked if she wanted to put a clean top on.  She did and we picked one out to put over the purple Alzheimer’s fundraising tee shirt she likes to wear.

“You know,” she confided, “people around here keep trying to get me to change my clothes all the time.”

“Well, they just want you to feel nice and clean.  It’s fine.  They suggest that to everyone.”

Sleepiness

Nowadays it’s not unusual for Mom to drift off to sleep during one of the coffee chat sessions we have with friends.  She is often up very early, eats, and then has a morning nap…or two.  She is often restless, so I doubt that she gets a full night’s sleep anymore.  Not sure how many people over 70 do.images (1)

Sometimes when I visit, I find her in bed snoring.  She’s in a deep sleep and I leave her alone. I have coffee/chat time with others.

The other day she fell asleep while visiting with her old friend, Jerry, on the phone.  He’s 91, restores old tractors and cars, gardens, and lives alone on 3 acres in southern Illinois.  He also likes to talk….and talk and talk and talk!  She just drifted off, so I took the phone and explained that “Mom is sleepy.”  Then he tried to engage me in listening but I dodged the opportunity.  He had been talking for 20 minutes and I didn’t want to listen to another 20.  We’ll call again sometime.

Confusion

Mom’s confusion is more pronounced, and she is not as quick at correcting or justifying herself as she used to be.

It’s still difficult for her to remember where her room is.

She isn’t sure if she had breakfast, or she simply says, “I don’t remember.”

She is often unsure of where she lives, sometimes thinks I live in the same place, and still spends time “trying to figure out what I’m supposed to be doing with my life.”  A response I settled on a month or so ago was, “One thing to be doing now is being such a good friend to Elaine and Eunice and Joyce.  They really appreciate your friendship.”  And then we move on to talk about some of the outings they had and the activities they enjoy together.

Recently after agreeing to go brush her teeth, she came out holding two small bottles of Revlon liquid make up.  “These are toothpaste, aren’t they?” she asked.  I followed her back into the bathroom and showed her what her toothpaste looked like.

On at least two occasions, one discovered by me and one by a staff person, Mom was wearing a knit top as a bottom, or trying to.  She had one leg in the sleeve of a top and the rest of the shirt kind of pulled up when I came and found her waking up one morning.  Also, she had on no Depends.  She hasn’t needed or wanted help getting ready for bed, but that will be changing.  When she tried to get up and go to the bathroom, she had difficulty walking.  “Oh…” I said, “It looks like you tried wearing the top as a pajama bottom.  Here, let’s get your leg out of the sleeve and I’ll get you some slacks.”

“Well, I knew something didn’t feel right,” she said.

I gave her a pair of Depends, fetched clean slacks, and we went on with the morning.

A similar incident occurred with Della, one of the CMA’s.  Pearl came out saying she needed a safety pin.  She was trying to wear a top as a bottom and couldn’t figure it out.  Della escorted her back to her room and helped her dress correctly.

Sadness

Some days I drive home rather sad seeing my fiercely independent mother lose skills and abilities.  I have sort of put grieving for my stepdad at bay and take it out once in a while.  With my increased sadness as I watch my mom struggle and become more confused, I know that my grieving process for her is beginning.  We have become very close over the past two years.  I love her in a way I never have before, and I feel a great deal of compassion for her.  Even as I write those words, I weep a bit.

images

The sadness, however, is part of the journey and it will deepen.  I accept that and try to enjoy this time when she knows me and can still banter…still complain…still accuse me of stealing her comb…and still thank me “for coming over.  I love you.”

I love you, too, Mom.

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Parental Journal 96 from Planet Elderly – Christmas at The Arbors 2017

Although it was a quiet Christmas this year, it was meaningful.

The decorations at The Arbors were beautiful, especially the spectacular Christmas tree.  Mom loved it…and kept insisting that “it’s been up for two years.”  Not sure how she came up with that since she’s only been in residence nine months.

Arbors tree 2017

In addition to great decorations, we enjoyed a delightful holiday gathering right before the hectic weekend.  It not only included fruit, dips, crackers and sweets, but for those who imbibe, we had a variety of beverages.  I brought a bottle of light, dry wine and Mom thought she would have “a little.”  I reminded her that we sip wine; it’s not OJ.  She took one sip and declared it to be “terrible.”

“Want to try some eggnog?” I asked, knowing she liked it years ago.

“OK.”

“Want a couple drops of bourbon in it or do you want it plain?”

“A couple drops.”  And she enjoyed it.

Several family members attended and it was a nice event.

Christmas Eve

I had morning coffee and chat time with Mom and pals…and said I’d be back after dinner to hang out a bit.  I brought my dog Cinnamon with when I returned, but the place looked deserted.  Mom was in bed, but got up to hang out with me.  Gil was walking around, checking to make sure everything was working.  No one else was in sight.  Most had retired to their rooms.  Party poopers.  Gil and Mom enjoyed some time with Cinnamon and then I found a good version of  the movie “A Christmas Carol” for Mom to enjoy before I left.

Christmas Day

Some folks left to spend the day with family.  Others were visited by family and friends.  I stayed for lunch and we had fried chicken breasts and some fabulous mashed potatoes.  After dinner Mom and I worked through an entire word find puzzle.  It was fun to see her so engaged.  While we worked on the puzzle, one lady made four attempts to “go shopping,” which set off the alarm system, but the staff was very kind and patient and repeatedly explained to her that the stores were closed.  She finally sat down and dozed off.

When I arrived, I gave Mom a gift from my friend Bonnie, whom she knows.  Before opening it up, she just sat there and cried.  I knew where she was…a little girl long ago whose mother was too ill to take care of her and sent her to an orphanage where no one ever received any love or gifts.  That time at the orphanage, before her aunt came to get her and have Mom live with her, is a deeply embedded memory that will probably never go away.  It’s also a favorite story the staff and I have heard multiple times.  I don’t dismiss it when she talks about that time.  I try to acknowledge her feelings and redirect her to the wonderful life she had later when married to Dad.

The gift from Bonnie turned out to be a mug with a Christmas sweater…and Mom loved it.

Mug gift from Bonnie Dec. 2017

I brought Mom a gift of a top and new pants.  She was wide eyed.  “I have some new clothes!  But I didn’t do any shopping for you.”

“We live in the same city now, Mom, and that’s the best Christmas gift ever.”  She agreed…opened the box and loved the contents.

Observations

Mom still thinks she needs to get a job somewhere, and she frequently crabs about my taking her vacuum.  She claims she could use it; I tell her the vacuuming is taken care of, but since it has always been her favorite chore, she’d rather do it herself…sort of.

She is requiring more assistance with dressing.  It’s not unusual for her to wear two or three bras…three pairs of nylon knee hi stockings…backwards pants…two or three pairs of Depends, different shoes.  It doesn’t bother her; it drives the rest of us kinda nuts.

Not changing clothes:  She seems perfectly  happy to wear and sleep in the same clothes for two days or longer.  Staff have different approaches to trying to get her to change clothes.  Some work; some don’t.  “People around here don’t want you to wear something more than once.  They think you have to put something new on every day,” she reports.

About those Depends:  She loves them.  She still manages her own toileting mostly, but she thinks these are “the best things…so comfortable,” and I remind her that if she has any accident, just throw them away.  “You don’t have to wash these, Mom.”   “Yeah, that’s great!”

Dental Care:  A matter of importance to everyone, but at her last cleaning with a new dentist here in Columbia, the dental hygienist cautioned how important for Mom to brush close to the gum.  Lately I’ve been reminding her to brush.  I didn’t want to make her made thinking I was telling her what to do, so I created this question:  “Have you had time to brush your teeth this morning, Mom?”   She responds quite well to that, and the answer is usually no; then she gets down to business.

Wrong Toothpaste:  After leaving her to brush her teeth, I returned to find her making faces.  “This toothpaste tastes TERRIBLE!”

“You’re right, Mom.  It tastes terrible because it’s the Benadryl itch gel, not toothpaste.  Here, try Crest…and we’ll keep the itch gel out of the bathroom.”

We laughed because it reminded us of the time when I was in school and Dad got Mom up to get ready to go to work. She was so tired that she tried using his shaving cream instead of toothpaste.  When we went to join friends for coffee and chat time, I told them about the itch gel being used as toothpaste.  Gordon and Joyce roared with laughter and Mom joined in.

Mobility:   As time goes by, Mom seems more and more unsteady on her feet.  It takes some time to go from sitting on the bed to standing up and walking.  Sometimes she says to herself, “Don’t fall, Pearl” because she did…but no one knew.  A couple of weeks ago, she had a red spot on her face…deep pink and then sort of a scab over one eye.  I asked if she had fallen and, of course, she said no.  Later she admitted to a staff person that she had fallen.

Once she’s up and going, she is fairly ok.  According to her, she walks a lot every day.  We have Dad’s rarely used walker ready for her, and I’m told that occasionally she has used it.

Itchy Skin is still a problem.  She gets relief from the various creams she has and Zyrtec is available for the staff to give to her.  She doesn’t seem able to realize she’s is scratching and then get the itch creams.  She just itches and tears at her skin, so several of us are keeping an eye on that and assisting with administering the cream.

Overall, it was a nice Christmas holiday.  I remember Mom asking, “Will you be visiting for Christmas?”  “Oh sure…Christmas Eve morning coffee and afternoon visit…lunch with you and your friends on Christmas day…you can’t get rid of me.”

“Good,” she said with a big smile.

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Parental Journal 95 from Planet Elderly: Wearing Three Bras Today?

Our Routine

I visit almost every day…mid-morning.  Some folks wonder why, but I enjoy being part of Mom’s community.  I’m probably still dealing with a bit of guilt for changing Mom’s life so dramatically when I moved her down here to Columbia.  On the other hand, we always agreed that we would enjoy living in the same community, but not with each other because we would drive each other nuts.  She still shakes her head in agreement when I mention this.

With three-year-old great granddaughter:

Mom kaylin 02 oct 2017

Mom Kaylin oct 2017

With two older great grandchildren:

Mom LaEabha Pax Oct 2017

Interesting Dressing Habits

Mom seems to like multiples.  For some reason, she puts on two pairs of nylon knee hi stockings.  I check regularly, and if I see what is probably multiple pairs, I just ask if she wants them on.  “No…I don’t know why I do that,” is often her reply.  So I help remove them and discard those with holes.

Tops are another multiple favorite and a shared fashion statement with others at times.  It’s not unusual for Mom to have on 3 or 4 tops.  “I like to be warm,” she would say when I asked.  I don’t ask anymore.  In fact, I marvel at the variety…shirts, blouses, and tee shirts I’ve never seen before.  They’re probably “borrowed” or “found.”

“Well, that’s a nice purple tee shirt you have on, Mom.  And it has a pocket.  Kind of looks like a man’s shirt.”

“Well, I don’t know how it got here.  I just found it so I put it on.”

“Any name on it?”

“I don’t know.  I didn’t look.”

I’m quite sure not all of Mom’s things have her name on them.  I should do an inventory and apply the black marker with the word “Pearl” where needed.

Only one time did I see her wearing multiple slacks.   She had on a pair of her own and over those she had on a  pair of very large beige colored culottes, shorter than her pair.  I admit I stopped dead in my tracks and decided I would address this.

“Oh…it looks like you have two pairs of slacks on.  Are you chilly?  Do you want to wear two pair?”   If she said yes, that would have been the end of the conversation, but she looked perplexed.

“I don’t know where these came from.  No, I just want one pair on.  I don’t need two.”

About those three bras….

Mom has dry skin and problems with bouts of itching.  We have all kinds of creams and the doctor even said to try Claritin which, it turns out, made her itch even more.

One day she was trying to scratch her shoulders and back.  I suggested we go to her room and put some itch cream on her skin.  She agreed.

When Mom began removing her three tops, I saw that she was sporting three bras.  Well, two and a half, really.  She had two on and the third was fastened around her waist but not yet hoisted up.

My reaction was a mixture of surprise and sadness.  It looked funny, but I felt so sad that she struggles with getting dressed…and what is it about her dying brain that has her wearing multiples…including bras?  I didn’t laugh.  I tried to be matter-of-fact.

“Oh, I see you’ve put on more than one bra.  You want to wear those or do you want to wear just one.”

“Oh…uh…just one.  I don’t know why I did that.”

“It’s okay.  Let’s take off the one around your waist and then you can take off one of the others.”

Once the bra situation was resolved she relished my putting itch lotion on her back, shoulders, and front area.  I get bouts of itching as well, so I know how maddening it must be for her.  If I have an episode, I take a Zyrtec.  Twenty minutes later, no itching.  The director of nursing has put in a request to Mom’s doctor to allow Zyrtec.  If we get approval, I hope that helps her.

Pretty Well Settled In and Helping the New Guy

Mom and her neighbors all have times when they want to “go home.”  There are times of agitation, sadness, confusion and anger.  With the help of staff, everyone weathers through those times and I’m sure the care taking and dining staff have plenty of tales to tell when they get home.  Since I visit before noon each day, I don’t experience Mom during her sun downing or more difficult times.

But all in all, at least when I am with Mom, she seems pretty well settled in.  She recognizes neighbors and staff and feels badly that she can’t remember their names.  She may need reminders about where her room is…or that she did have breakfast…or that she needs to brush her teeth and put on itch cream, but overall she is adjusting.

Mom and friends enjoying some chat time:

Mom and friends Oct 2017

Getting her hair done by Nancy:

Mom and Nancy hairdo day Oct 2017

New “DO”…and the perpetual PURSE:

Mom new hairdo Oct 2017

Halloween visitors:

Mom halloween visitor 2017

Recently a new resident moved in.  After about two weeks, he realized that he was not going back to where his wife lived…and he was upset.  I was told that Mom heard him and came over to talk to him.  She told him she didn’t like being here at first and has days when she is restless and angry, but now she knows this is the best option and people here are nice, etc.  I didn’t hear what she said, but I was so pleased to learn that she made an effort to approach someone new and comfort him.  It doesn’t matter that maybe two hours later she was complaining and insisted on going back to Grayslake.  She had compassion and clarity for a time and wanted to help someone who was going through what she had gone through.  What a sweetheart.

 

And Then There Was Our Visit to the Emergency Room Last Saturday

Last Saturday was the family and friends Thanksgiving dinner.  My taste buds were eager for that visit, but when I arrived I found Mom wincing in pain in her room.  She could barely move.  After being examined by the director of nursing, it was agreed that Mom should be seen.  Staff helped me get her in the car and when we got to the ER we lucked out.  No one was waiting.  (I had visions of us being there for 6 to 8 hours and missing the Thanksgiving feast.) Mom ER visit nov 2017 cracked rib

Of course, as soon as Mom was situated in a room she felt “fine.”  The resident doctor did an intake and an examination.  Then the experienced head doctor took a look/feel.  X-rays were ordered and we were told that she has a cracked rib.    Tylenol, walk around, and practice coughing.

How did she get a cracked rib?  No falls were witnessed by staff and Mom, of course, swears that she never fell and never bumped into anything.  I remember the ER nurse saying this would take time to heal, but that it was much better than a broken hip or a concussion.   Mom’s eyes were wide as saucers when she heard that.  She was helped into the car and we got back to The Arbors At Mill Creek Village  in time to enjoy a nice Thanksgiving dinner.

 

Observations:

When I do her nails, she sees cotton balls and thinks they are eggs.  But she loves the end result.  We go for a subtle look:

Manicure 111917

She will have days of crying and sadness; then things change and she acts content and glad to be where she is because “the people are nice and they keep it clean here.”

She can engage in lively kidding and jokes during coffee/chat times…sympathize with others if they are upset.

I’m seeing a “lost” look on her at times.  I know things will only continue to decline, so I am grateful for every visit we have where she and I can chat and laugh with our friends at The Arbors.

When Mom looks sort of lost:

Mom lost look oct 2017

Mom and Me Oct 2017 far away look

Putting on pants backwards is another fashion trend she has.  I mention it to her and ask if she’d like to turn them around.  If not, okay.  She always chooses to put them on the right way and will again say, “I don’t know why I do that.”

She seems pickier about food.  She’ll wrinkle her nose when I read her the lunch menu…even if it’s something she has always enjoyed.

I do believe that on some level she understands that it is good for both of us to live in the same city.

 

So we have our routine now and Mon is glad to see me when I visit.  Unfortunately, after I leave she sometimes thinks it’s been days or weeks since she last saw me.

Mom often tells me how wonderful it is that I have many friends and that I should enjoy myself.  She has always just wanted me to be happy and to be in relatively good health.  So far, so good, Mom.

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