Happy birthday, Mom.
She would have been eighty-eight today. Yesterday, we celebrated Dad’s 97th birthday. He didn’t remember it was his birthday, of course, but we celebrated anyway. No more presents since he has no need and really doesn’t know what to do with them. But cake and cards and a visit are always good. He was having a good day and we had a pretty good conversation, albeit repetitive. I sent photos to the rest of the family.
August is birthday month for us. The first is my birthday and Mike’s is at the end of the month. Throw in my grandmother and father and you can see why years ago my mother won a trifecta betting on a horse called Mr. August. August is our month.
The morning of my birthday, I got a beautiful text from a friend who’d just finished reading my book. With all the hustle and bustle of caregiving, doctor visits, and house maintenance, I’ve set the promotion of the book aside. But after receiving her message, I realize I need to get back at connecting with bookstores, libraries, and agencies on aging because that’s the reason I wrote it. To touch the hearts of people who need to hear about hope and forgiveness in the midst of the difficult times of caregiving.
If you’ve read the book, Forgive and Forgotten, please post a review on Amazon to help others find its message. And feel free to let others know I’m available to speak about rejection, forgiveness, and caregiving for a dementia patient.
Blessings on your August!
There was a note on the kitchen table.
Fix Dad’s glasses.
“Did his glasses fall apart again?” I asked Mike.
“What happened this time.”
“I don’t know. The lens fell out.” I looked at the glasses.
“You mean both lenses fell out,” I said. Mike came over to look.
“What?? I just had the technician put on bolts to the screws to keep them in longer!”
“I think Dad may have undone them, although where he got a screwdriver to do it, I have no idea.”
“No, he just keeps stepping on them. There’s no way he could see and concentrate to do that.”
And so Mike took Dad’s glasses in for another repair. We talked about maybe not bothering with his glasses anymore since he can’t read and doesn’t watch TV (the remote is too complicated for a dementia patient). But he does need them to be able to see his plate when he’s eating a meal.
That lasted for about a month. Dad breaking them, Mike taking them in to be fixed. And just as suddenly as it started, it stopped. Then some other behavior changed that we had to problem solve.
And so it goes with caregiving for a dementia patient. You barely have time to get your bearings, when the problems change and you need a new strategy.
Never a dull moment.
Easter was cold, but the sun was shining brightly. Our plan for the day was to celebrate with Dad. I reminded Mike we needed to get there early in the likely event we’d have to get Dad dressed, or rather re-dressed. Lately, even when the aids get him up and about, he goes back to his room and gets undressed by himself and getting him to put his clothes back on is quite a process.
As I suspected, Dad was not ready for an Easter luncheon. He wasn’t even out of bed, and didn’t want to get out of bed. We started our negotiations.
“Get up, Dad, and we’ll have an Easter dinner together.”
“No, why don’t we have it in here?”
“No, it’s a lovely day. Get dressed and we’ll go to the dining room together.”
“You go without me.”
“Dad, we came to be with you. Going without you defeats the whole purpose.”
“Oh. Okay.” But he makes no move to get up.
“It’s Easter, Dad. I’ve made you a present.”
“Yep. But you have to get up and get dressed to get it.”
“Let me see what it is first.”
He smiled. It was going to be a good day. So good, in fact, that when he got up he as able to dress himself. The aids came in to get him to the dining room and were delightfully surprised that he was almost ready to go. Dad joked with them and when they left he told me he had a strategy to make all the staff like him. If only he remembered that strategy when he got angry and threw things at them. But today, for now, he was in good form and we went to the dining room together and joined another patient whose family was not able to be with her.
The conversation around the table was disjointed. Dad was deep into childhood memories, our table companion had developed certain coping mechanisms to cover her memory loss and both were chatting away about different things and were at peace. The sun shone brightly in the large room, we shared a meal together, and calm reigned for the day. I found great joy in that. When dealing with dementia, finding joy is vital.
For those of you in the Western tradition - hope you had a Happy Easter. For those of you who celebrate Passover, Shalom! May your Pesach overflow with happiness! For those of you in the Orthodox tradition who will celebrate Easter this weekend, Kaló pásha ...Happy Greek Easter!
May you be blessed. May you find peace.
The book is now complete and in print. I realized too late that I hadn’t put in any information about the painting that's on the front cover. Humor me, and let me tell you about it.
It is a watercolor and the title is Memories of Kate. My grandmother’s name. The composition has tatting and crochet work she’d done and the rose is one of the varieties she grew in her massive rock garden. All things that make me think of her.
The reason I chose that painting for the cover is because the story couldn’t have happened without her. She raised my mother and she raised me. Her influence is felt in my life to this day. If you read the story, she appears in the first few pages and you’ll understand.
Thank you to all who have purchased the book and given me feedback on how it affected you. Your comments and encouragement have deeply blessed me.
You may have noticed I’ve been noticeably absent from the blog for the month of February. Completely unplanned events and health emergencies of our family took up much of my time. We’ve yet to plan and execute a retirement party for my husband for family and friends and my studio lies languishing from neglect.
But all is not lost. While life has been happening, the publication of the book has been chugging along and Friday, March 9, the printed version of Forgive and Forgotten will be completed. Both paperback and e-book versions are available on Amazon which you can reach here: https://www.amazon.com/Forgive-Forgotten-Memoir-Donna-Kemper/dp/1625860935/ref=sr_1_fkmr0_1?s=books&ie=UTF8&qid=1520345238&sr=1-1-fkmr0&keywords=forgiven+and+forgotten+donna+kemper.
The subject of forgiveness is perfect during the Lenten season. If you are interested in a book signing at your church or small group, contact me at email@example.com.
When Mom Kemper died, our world changed drastically and quickly. While planning the funeral, we also had to find a memory care facility with an immediate opening where we could transfer Dad. We had to tend to out-of-town guests, empty Mom and Dad’s apartment, prepare a new place for Dad, and deal with some of health issues. Since the weather was cold, we postponed having an interment ceremony until warmer weather came.
But once summer came a variety of other life issues needed tending and again the interment was postponed. We finally got everyone together and scheduled a date to have Mom’s ashes placed at Fort Custer National Cemetery in Battle Creek. Mike’s sister came to town from out of state, and Mom’s brother and his wife met us at the cemetery.
When we had started out from Grand Rapids, it had been overcast and cool. But as we sat in the shelter while the deacon spoke words of comfort, the sun was out and it was a lovely autumn day. A good day to remember Mom and I was thankful for that small blessing.
Of course, Dad had no idea what was happening. As Mike drove, I sat with him in the back seat and he’d ask me where Donna was (that would be me), where were we going, where’s Mom, what were we doing, and some other questions that didn’t make sense. I kept distracting him by pointing out the changing colors of the trees which he really didn’t engage with. But he was really interested in any truck dealerships or RV dealerships we passed. When I spotted one, I’d point it out and exclaim, “Wow, Dad! Look at all those trucks!” and that would help for about a minute or two before he started wondering what was happening.
After our time at the cemetery we had a late lunch together and by the time we were finished it was getting to be about four in the afternoon. Dad was beginning to go deeper into his confused state. A couple evenings before we’d had an episode of sundowners syndrome and it looked like we’d be having another. Sundowning is a state of confusion and agitation that occurs in the late afternoon into the night with dementia patients. We’d had a very busy week and it was taking a toll on Dad. We did our best to get him home and settled.
All the traveling is done now, the visitors are gone, and Dad is getting back to his regular schedule. But he still asks me where Mom is.
If you want to know more about sundowners syndrome there’s a helpful description of it on Mayo Clinic’s website. You can find it here: http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/faq-20058511
Saturday was bright and sunny as we went to Mom and Dad’s apartment for the last time. The charity has come and picked up the furniture. Now, we filled up the cart with the last load of bits and pieces, I vacuumed the entire apartment while Mike washed down surfaces. Once I was done, I walked back into their former bedroom and tears softly welled up. They don’t come so suddenly in a rush anymore. Now it’s a gentler flow. We loaded up a cart, gave the poinsettia to one of Mom’s friends, and went downstairs to say goodbye to the friends they made over the past five years. Everyone asks after Dad. I tell them he’s doing the best he can under the circumstances. We promise a visit when my sister-in-law comes back into town and then we’re off to empty the car and fill our house halfway to the ceiling with boxes.
We drop off the keys and access cards the next day after church and after dinner go to visit Dad. He’s in good spirits but very confused. He’s still unclear about Mom, although now when we tell him she’s gone he’s not as surprised, nor as upset. He realizes he’s heard that before and now wants to know the details of their will. Then we skip to Mother again and for a few minutes we go around and around. I pull out a photo album I made of the time a few years ago that he, Mike, and I went for a ride on a B-17. This was the type of plane he was a gunnery sergeant for during World War II. This brings back memories. Both of the war and of that day. The memories are a bit scrambled, but pleasant and gets the conversation off things that worry him. But when we’re done, he’s back to being confused and worried. To the point that he asks about Mom’s husband. But when I point out that would be him, he throws back his head and laughs and says he’s glad I reminded him of that.
And so we’ve transitioned to a new phase of the journey.
It’s 5:30 a.m. and the phone is ringing again. Mike is so exhausted he doesn’t hear this time and I don’t hear his sister stirring, either. This is an answer to prayer because I want them to be able to rest. I get up to take the early morning shift.
I’m not quick enough and the answering machine is getting it, but I’m not concerned. It will ring again and as I reach the bottom of the stairs, it starts. I’m thankful he’s forgotten about the cell phones. Mike’s is in the bedroom and it’s jolted him awake several times already.
“Hello?” I answer.
“Uh, well…uh, is this Mike?”
“No, Dad. It’s Donna.”
“Can I talk to Mike?”
“No, Dad. It’s 5:30 and he’s in bed. He needs to sleep and I’m not waking him up.”
“Oh. Uh. Well, do you have a minute?”
“Yes, Dad,” and I sit on the stairs. It will be a while.
“I’m completely bewildered. I can’t find Anne.”
“No, Dad. She died.”
“No, Mike’s mother. Anne. Your Anne has died.”
“My mother, Anne?”
“No, Dad. Your wife.” His mother’s name was not Anne.
“How did that happen.”
“Her lungs wore out, Dad.”
“Where was I?”
“You were holding her hand.”
“Here in the house?”
“Yes, Dad, the apartment. You were holding her hand, I was reading the psalms to her, and Mike was stroking her hair.”
“Did she suffer?”
“No, Dad. It was peaceful.”
“Why can’t I remember?”
“Your memory has been bad for a few years, now.” He will accept this from me. He called Mike a liar last night.
“I can’t remember any of this.”
“Is Mother with you?”
“No, Dad. She died.”
“Was there a funeral?”
“No, Dad. It will be Friday.”
“What day is today?”
“What should I do?”
“Go back to bed, Dad.”
“I found a note here. Did something happen?”
“Mom’s gone, Dad.”
“I have to go get her.”
“You can’t, Dad. She’s died. We’ll have a private viewing today. Your daughter came to town yesterday and spent the day with you and we’re going to go see Mom one last time.”
“At 11 o’clock.”
“Will I go?”
“Yes, Dad. We’ll come get you.”
“Has there been a funeral?”
“Has something happened?”
And on it goes for another five minutes or so. Suddenly he’s done and hangs up.
I go to make a cup of coffee and clean up the kitchen a bit.
The phone rings.
There’s an expression I recall from the Old Testament. “And when he was full of years, he was gathered to his fathers.” It is such a poetic expression of death. I love the imagery of it. Being gathered into the arms of those who have loved you and gone on before. I find it beautiful.
Mom Kemper was full of years. Ninety five and a half, to be exact. Now she has been gathered to her mothers and fathers. She had a very smooth transition at home in her bed with her husband of seventy three years holding her hand, her son stroking her hair, and her daughter-in-law reading psalms sitting next to her. We were so blessed to be together as she passed.
We are deeply grieving. Dad doesn’t remember the experience and finds out over and over again, grieving anew each time. He calls in the middle of the night to tell us Mother has gone somewhere and do we know when she'll be back. It is heartbreaking.
Because of all a death entails with the addition of caring for a grieving dementia patient, this blog will be on hiatus. Prayers are always appreciated.
Dad has gotten it into his head that I am longing and pushing my husband to move to Florida. He continually asks Mike and me when we are going to retire, have we planned for retirement, and when is it going to happen. This is a mystery to all of us. I have friends who have moved to Florida. I’ve house-sat for friends in Sarasota. I’ve had the great pleasure of staying in a friend’s condo on Marco’s Island. I’ve had uncles who lived, died, and are buried in Florida. Burmese pythons notwithstanding, Florida is a lovely state that holds wonderful memories for me.
However, we have no desire to move there. Many areas are too commercialized for my tastes, the heat and humidity are unbearable in summer, but the biggest issue for me is the traffic. What would be a short, ten minute drive in West Michigan turns into a minimum of a half hour drive in Florida. There is no such thing as a quick trip to the store. I’m not moving anywhere with insane traffic unless it has an excellent public transport system.
And did I mention the Burmese pythons?
Trying to convince Dad this is not the case has proved fruitless and the truth is, this new issue will eventually pass. But Mom and Mike are both sick of hearing it since it has been going on for months. Interestingly, he does not bring up ‘the move’ when I’m around. He does question me about retirement (for me that’s a ways off - for Mike it’s a couple years), but not about my desire to leave Michigan and move to Florida. So Mom tried a different tactic and one day last week when I was there helping her with her emails, she asked me in front of Dad, “Donna, do you want to move to Florida?”
I answered an emphatic no, listed the reasons above and added, “Dad, the whole reason we moved you to Grand Rapids is so we could be close to you and be available to help you whenever you need it. How could we do that if we are out of the state?” He started protesting we shouldn’t stay in Michigan because of them. He still doesn’t believe he needs our help very often and both Mom and Dad think once Mike retires we’ll be footloose and fancy free to go travel the world. The fact is, they take vicarious joy when we take trips, because they themselves were world travelers back in the day.
But once a fear has lodged into his brain, he can’t let it go. And even though Mom said, “See John? She doesn’t want to move to Florida. I don’t want to hear it again,” we all know it will continue to be an issue in his mind until something else replaces it. I’m willing to be the awful daughter-in-law that’s taking his son away if it keeps him from some other, more detrimental actions or thought patterns, because that’s what it really boils down to. I’m a selfish woman.
Love is patient, love is kind. But it isn’t always easy and it often breaks your heart.
Donna Kemper put aside her art career to care for a mother she hadn't seen in over a decade. For seven years she followed her mother's journey into dementia, caring for her and putting forgiveness into action.