Tag: Dementia

What Do I Do?

September 23, 2016 / Shari Baar / 0 Comments

February 28, 2023

During the snowstorm last week I was thinking about Grandma as she was nearing the end of her life. It’s been over six years since she’s been gone, but the memories are still vivid in my mind. I learned so much from her as she lived in weakness and confusion…

September 15, 2016

Dear Daughters,

The other night Dad invited Grandma to dance with him after dinner. Almost every night after we have cleared the dishes she asks “What do I do next?” And almost every night Dad’s answer is “Dance with me.”

So he put his arm around her shoulder and started doing the quasi-Rockettes kick while she stared at him in disbelief. Grandma looked over at me and said “You live with this guy? I think I’ll send you a sympathy card.”

The same after-dinner conversation happens often, but of course she doesn’t remember that it happens often.

Grandma asks many times every day

What do I do, what do I do?

She simply needs direction and instruction about what comes next in her day since she wanders if left on her own.

One day I came into the den when she was waking from her nap. She was almost in tears saying,

Lord, what do I do, what do I do?

Confusion reigns in her mind as it has become tangled and disobedient to her commands and desires. But as I was walking away I thought,

What a beautiful picture of what we should be doing every minute of every day. I cannot live my one life well unless I am connected with Jesus, always asking Him,

What do I do?

when I am confused, frustrated and unsure of how to respond to a hurtful word or a discouraging day.

Whenever I ask God

What should I do?

the answer is typically

Trust Me. Give thanks because I am working for your good,

even when it seems there is darkness is all around.

During the day I have many tasks for Grandma to do: water the flowers, empty the dishwasher, put tomatoes on the dehydrator trays, walk down to the road, fold clothes, set the table, take a shower, play the piano, whistle her favorite songs. When I instruct her to do the work she is usually eager, although with a few moans and groans now and then. But if there is no direction from me she has no idea where to go or what to do. If I am out of her sight for more than a few minutes I hear her calling

Help! Help!

Grandma’s confusion has recently taken a new twist. She is often quite mixed up about the time of day. Yesterday I heard her walking down the hall at 2:00 in the afternoon (when she is usually napping), shuffling in her bathrobe and slippers and wearing no dentures. She apparently woke from her nap early and somehow thought it was close to bedtime so proceeded to get ready.

I stopped her in the hallway, asking why she was in her pajamas. She matter-of-factly said “It’s almost bedtime.” I suggested that we go back and change into her clothes since it was a long time until bedtime. I tried showing her the clock and reasoning with her, but she still wouldn’t believe me, continually insisting that it was bedtime.

Normally she is quite compliant and will cheerfully do as I say. But yesterday she adamantly said

I don’t want to change my clothes, just let me do what I want to do.

Hmmm, now that sounds exactly what I say to God now and then. I get tired of waiting for Him to answer my prayers the way I want Him to. Sometimes I get weary of doing what is right, of being responsible. Some days I want to whine and complain, throw a pity party. I am tempted to give up and pray no longer.

But the same verse always comes to me – the time many of Jesus’ disciples turned back and no longer followed Him when life started getting difficult. Jesus asked the Twelve “Do you want to leave too?” Then Peter answered him,

Lord, to whom else shall we go? You have the words of eternal life.

Yep, that’s the bottom line. Who else but the Creator of your soul loves you and is looking out for your good and your growth? So I cut short my pity party, continue to be faithful and responsible, keep on praying and giving God thanks. They are simple disciplines, but important.

Grandma teaches me so much these days. Even though her mind is foggy and forgetful, Jesus speaks through her life into mine.

Look to the weak people of the earth, wisdom is there for us all.

Love, Mom

Curious and curiouser

June 7, 2016 / Shari Baar / 6 Comments

Dear Daughters,

The days with Grandpa and Grandma are getting curious and curiouser.

Yesterday I heard a timid knocking at my bedroom door. It was Grandma telling me that Grandpa’s hand was bleeding; she didn’t know how to stop it and needed my help – quickly. I walked to the den with her where Grandpa was contentedly reading his book about American Indians. I asked how his hand was doing and he showed me a small scratch with a few drops of blood on it. Apparently he had been scratching Fluffy on the ears and was rewarded with a swipe of her paws.

Next, Grandma brought me to the bathroom where she had been trying to find some Bandaids. Scattered across the sink were the contents of several drawers – adhesive tape, a roll of gauze, an Epipen, several Alberto V05 hairdressing tubes, Grandpa’s razors, liquid skin, and an ear/nose trimmer. Because of her dementia she could not discern which of those articles would be helpful for Grandpa’s injury. She loves him so much. I looked at the collection of objects and chuckled in my mind, yet saddened that her ailing thoughts were incapable of choosing the correct item.

It’s so interesting, yet at times frustrating, to observe how a mind that used to be so sharp is now wandering, confused and weary. I know she tries her hardest to do her best, yet the thoughts don’t connect like they used to. However, Grandma is always happy, often whistling, content, and for that I am grateful.

Every morning I help Grandma pick out her clothes and coach her as she dresses because it is becoming an overwhelming task on her own. One day I was looking for her long johns, which she wears 9 months out of the year, and noticed there were none. So I searched in surrounding drawers, nothing there either. I finally went to the dresser across the room and found them scattered among many other miscellaneous clothing items. She tries to organize and help, but it sometimes turns into Hide and Seek/Search and Find, a game we play often.

Then it is Piano/Whistling Time. With simply some written prompts Grandma can play any song on the list. I must have over a hundred songs written down on 4 x 6 cards and she plays them all beautifully, artistically, fancy flourishes and arpeggios included. She can still whistle many bird calls, learned as a child and performed professionaly. Her dementia is nonexistent for a time, and she is queen of the piano once again.

On another day I had just put on the tea kettle to boil and left my mug with cold water sitting on the sink. I had to go back to my bedroom to get my book and when I got back I was ready for a drink of water, but my mug was nowhere to be seen. So I went again to my bedroom thinking I must have forgotten it there. Not so. Back to the kitchen again thinking I’m losing my mind. Oh well, I figured I better just keep to the task at hand. I continued getting tea ready for Grandma and Grandpa. Reaching into the cupboard I grabbed the first 3 mugs I saw to fill them with the now boiling water. As I pulled the mugs out I was splashed in the face with cold water from one of them which, of course, was my missing mug filled with water. Apparently Grandma, always the neat and tidy one, thought the mug belonged in the cupboard, not realizing it was full of water. It was quite surprising, yet refreshing….

Grandma loves to help fold laundry. Because her vision is so poor I give her towels, handkerchiefs, and other straight edged articles to fold which she does beautifully. One day I gave her a kitchen dishcloth to put away, and said “It goes in the 3^rd drawer down.” I heard her go into the kitchen saying 1, 2, 3 (pause) 1, 2, 3 (pause) 1, 2, 3 (pause). Later I noticed that the dishcloth was sitting alone on the sink. The task must have been too baffling.

I’m slowly learning what is doable and what is just too complex for Grandma to do. The interesting thing is that it changes from day to day. I try to always keep alert and search for the right words to connect with what she can comprehend.

Usually when she needs help she will call out “Help!” or “Hellooooo.” But the other morning I heard her calling out “Ding-a-ling-a-ling.” I walked to her room and teasingly asked if she was calling me a Ding-a-ling.

“Oh no,” she replied. “I was just being like a bell.”

Smile.

Last week Dad and I were able to get away for a few nights, so we went up to Sun Valley. Mountains, gorgeous mountains, fresh air, evergreens and quaking aspens – my favorite tree as the wind through the leaves makes a delicate, quivering sound. How the days flew quickly by, and too soon it was time to return home again.

As I walked through the door, Grandma was coming down the hall without her teeth or glasses, shuffling in her bathrobe. I greeted her and gave her a hug. “Who are you?” she asked, “Are you Willow?”

“No, it’s me, Shari,” I smiled.

Now I know our dog is friendly but I don’t ever remember Willow saying hello or giving hugs. I tried not to be offended, but it was kind of an unusual welcome-home greeting. The categories in her mind are being confused, but at least it’s all in the same category of living creatures….

A few weeks ago Grandma, Grandpa and I went to Twin Falls for a doctor’s appointment among several other stops. We three were together the entire morning and got home just in time for lunch, so I went to drop my stuff off in my room. I came back to the kitchen to start heating the soup and preparing sandwiches. Grandma came into the kitchen as well, saw me and said, “So, how was your morning?”

“Good,” I answered.

“What did you do while we were gone?”

“Well, I actually was along with you this morning, I was your driver,” I replied.

“You’re kidding!” she exclaimed.

“Nope, it was me all along.”

Everything is new, everything is fresh, always a surprise.

“It’s OK, Carol, you’ll probably remember better tomorrow,” Grandpa often says after she exposes her fading short-term memory.

Some days I find my time here a joy, other times it’s difficult – just like all of your lives. How kind of Jesus to put us right where He wants us in order to learn to love.

Keep on keeping on….

Love, Mom

Dementia, Deafness and DMV

October 6, 2015 / Shari Baar / 0 Comments

Dear Daughters,

One morning last week I woke up and walked sleepily into the den on my way to the kitchen. It always takes me a while to adjust to the bright sun and the new day. I like quiet and peace in the morning – and a cup of tea.

As I walked through the den, Grandpa was reading the morning paper and I said Good Morning just like I always do. He saw me coming and his first sentence was one of panic. I CAN’T HEAR A THING! MY EAR WENT BONKERS! ALL OF A SUDDEN EVERYTHING JUST WENT BLANK!!! I’M GOING TO BE DEAF JUST LIKE MY MOTHER!

Whoa, hold on, I’m not quite ready for all this so early in the morning.

I vaguely remembered this happening one other time and it was because wax somehow suddenly dropped into his ear canal (he only has one working ear) and plugged everything. Producing a plethora of ear wax is a gift that Grandpa has been given, for better or worse.

I called his ear doctor and the friendly receptionist found an appointment for him that same day. I think she noted the urgency in my voice.

Since we left plenty early and a car wash was on the way, we decided to stop in. As we were driving up Grandma thought it said Ear Wash, so she and I started discussing how handy it would be to drive through with Grandpa’s window down and get his ear cleaned at the same time, saving a trip to the ear doctor. We decided against it.

We had another short errand to do while we were in town – a trip to the Department of Motor Vehicles to get a registration for the new ATV that Grandpa had just purchased.

As we were walking into the building we had the following conversation:

Grandma: Why are we here?

Me: To get a registration for the new ATV.

Grandma: I didn’t know we got a new one. Where was I?

Me: At home. DAD, LET’S GO IN THIS LINE.

Over here, Mom.

OK, DAD, YOU NEED TO SIGN RIGHT HERE BY THE X

Grandpa: SIGN WHERE?? (Since he has a serious tremor he had his signature stamp that he uses for official documents)

Grandma: Why are we here?

Me: To get a registration for the new ATV.

Grandma: I didn’t know we got a new one. Where was I?

Me: At home. OK DAD, IT WILL COST 8 DOLLARS

Grandpa: HOW MUCH?

Me: (shouting directly in his ear) EIGHT DOLLARS.

Grandma: Why are we here?

Me: To get a registration for the ATV.

Grandma: I didn’t know we got one. Where was I? Are we going to be late for the Doctor? Do you know how to get there?

Me: No, we’ll be early. Yes, I’ve been there many times before.

Grandpa: I’M SURE GLAD THEY HAVE CHAIRS IN HERE SO I CAN SIT DOWN.

Me: Yup.

The friendly DMV guy: I wish I had a cool signature stamp like that, my writing is horrible.

Grandpa: I’M SURE GLAD WE DIDN’T HAVE TO WAIT IN LINE, WE CAME AT JUST THE RIGHT TIME.

Me: Yes, it was wonderful, no wait at all.

Grandma: (as we were on our way out) Why did we come here?

Me: Sigh…..

Every day is an adventure in our household. Living with Grandma who struggles with dementia and macular degeneration and Grandpa who finds it difficult to walk and hear, there are never ending conversations of repetitions and descriptions. Dad and I spend much of our time in laughter, some in tears, other times we simply sit together in silence, lamenting the frailties that come with advancing years.

Just this morning, we were making apple sauce from some of the beautiful Granny Smiths we had picked earlier in the week from Grandpa’s trees. Grandma and I were chatting as we used the nifty peeler/corer that makes our work much easier. Grandma asked where I had learned to use the machine so I mentioned that she had taught me many years ago when I was living at home. She looked at me quizzically and said I think you have me confused with someone else. I’ve never seen this thing in my life.

It still hurts not to be known by my own mother. To her I am the cook, the one who put those pills in the little dishes every night, the picker of garden fruits and vegetables, the one who helps to wash, dry and sort clothes, the lady who gets tea for her in the afternoon and encourages her to play piano every morning.

Even though Dad and I have been living here for almost a year, Grandma will ask if I’m spending the night or do I need to go home and take care of my family.

I feel like she is my little girl and I have become her mother. Much of the time I do my work with joy even though she doesn’t realize who I am. Other times I ache, missing the bond and memories we used to share as mother and daughter.

I weep for what has been lost, disappointed when I realize that she will not get better.

At other times I rejoice for what is coming in the future. Going through this season of life has made me hungry for the coming eternity, my heart longing for our time in heaven when Grandma will know us all once again. I hope for that which Jesus has promised, the renewal of all things:

We have this hope as an anchor for the soul, firm and secure. (Hebrews 6:19)

I am grateful that this world is not the end of the matter, but simply a preparation for the magnificent future awaiting us, a heaven where there is no dementia, no blindness, deafness, or aging. Looking forward to this frees me to love now and helps take away some of the pain of loss. Our current life is much easier to enjoy simply because I know the best is yet to come.

Loss doesn’t rule, hope does.

Love, Mom

Trust Me

April 22, 2015 / Shari Baar / 6 Comments

Dear Daughters,

A few weeks ago I was helping Grandpa and Grandma prepare for a trip to California with Aunt Rhonda and Valerie. Although they have traveled down south many times in their lives it’s different now that they are older.

Dementia has changed everything.

Although the trip was three days away there were many wonderings, numerous questions, countless concerns. “Who is going to take care of Willow when we’re gone? Will she have enough dog food? Who will feed the cats? Will we have time to fill my eye drop prescription? Who is driving us to the airport? What time do we leave? ” As Grandma carried the calendar from room to room she asked, “What day is it today? How many days until we leave?” The same questions were asked over and over in variation during the course of the preparation days. I simply said “Trust me, Mom. Everything’s ok.”

Even though I had written down the answers to many of her questions, she continually thought up new ones. The day before the departure date, while Grandma and I were packing the luggage together, she assured me that she had never seen that carry-on before. So I let her search through all the closets of the house, and when she couldn’t find the right one she reluctantly agreed to use the one I had chosen at the beginning.

Finally the day came to depart. The luggage was zipped up and ready to go. I needed to go into another room to make a quick phone call so I left for just a few minutes. When I came back the contents of the carry-on were scattered across the table. “I’m just double checking to see if we have everything we need,” said Grandma. With some slight frustration in my voice I again simply said “Trust me, Mom. We’ve got everything you’ll need.”

I smiled to myself, being transported back 20 years ago to when you four girls were young. So much of the same scenario presented itself except that now it’s my mother instead of my children doing these things.

An interesting part of this story is that a few days earlier we had 15 people over to the house, hosting an evening of music with some friends who love to sing. The pianist for the evening was Grandma. She was full of smiles as she welcomed guests at the door, and was sharp as a whip at the piano.

All she needed was a sheet of paper with the names of the songs and the key in which she played them. Whenever anyone chose a song from the prepared song sheet, they simply requested the song of their choice and within five seconds Grandma had the introduction in motion – flourishing arpeggios included.

It amazes me that one person can still be so gifted, yet have such deficits in other areas. But isn’t that just like all of us? We all shine in some way or another, yet have other areas that are not so shiny.

After Aunt Rhonda and Valerie left for California with Grandpa and Grandma, I got thinking about all the anxiety and worries that Grandma had been plagued with. And I wondered if we ever look that way to God.

Spiritual dementia.

We ask so many questions, What am I going to wear today? Should I change jobs? How are we going to pay all the bills this month? Will there be enough water for the crops to grow well this year? What if my marriage fails? How about my friends, will they stick near me or will I be abandoned? What if a tornado strikes our home?

On and on the doubts arise, the questions come over us like waves. Does God really care about all the details of my life? What about the choices my kids are making? What if I get sick and can’t work? What if identity theft happens to me?

Though it all God is constantly saying “Trust Me. I love you, I care about you. Trust Me. I will never leave you or forsake you. Trust Me.” I’ve had many anxieties over the years, betrayals, rejection – just like all of you. But as I look back on those years, God has given provision and comfort at every turn.

However, one thing he has not provided is understanding. I would love to know the what, where and why of many circumstances, but that would take away the necessity of faith. Of simple trust.

Things have often been difficult – in my marriage, in my work, in my mothering. But I have learned to trust, sometimes grudgingly, sometimes simply repeating the words “I Trust You” when there is no emotion and very little faith behind it, and at rare times with assurance.

Looking back on six decades of life there are still times when voices from the past – condemning, accusing, mocking voices still haunt. During those times too the words “Trust Me” have been woven like a thread throughout my existence. There were years that I didn’t trust, thought that I knew better than God so I did it my way, which brought sure misery. There were times when I, just like my mother, looked through all the closets for a different way, an easier way to live, and God watching and letting me search until I could find nothing else that satisfied. When I finally turned back to the words of truth: Trust in the Lord and do good. Love your husband – just as he is, let go of your children and let me lead them… Then, and only then did I find sweet peace.

Now that we’re here caring daily for Grandpa and Grandma I still need to listen to God’s voice saying “Trust Me” during the days of uncertainty, questioning and repetition. And I pray that you, my beautiful daughters will learn to say those precious words “I Trust You” as well.

Love, Mom

Tag: Dementia

What Do I Do?

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Dementia, Deafness and DMV

Trust Me

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