A few weeks ago, Hospice called to let us know Dad was entering into his last stages. He had been winding down for a long time and often the end stages of the death process can last weeks. We kept visiting, but did not see a precipitous decline the way my own mother had died. After some consideration, I decided to take a quick trip to Muskegon while Mike visited Dad. His first visit found Dad sleeping so he came back in the evening. Dad was still sleeping so Mike stayed with him about an hour just talking to him. He decided to go and come back the next day. Half an hour later, when the aides checked up on Dad, he was gone.
Mike felt he should have stayed longer. I felt I shouldn’t have gone to Muskegon. But the truth is, we took good care of Dad, loved him well, and a few days short of his 98th birthday he was ready to go.
The following day found us taking care of business. Contacting the funeral director, calling friends and family, arranging with my sister-in-law to come and stay with us, contacting the church to arrange the funeral, and by the end of the day we were spent and sad.
I was staring out of my office window when I noticed a butterfly in the back yard. Frequently, there are monarchs or cabbage whites in our yard but this one was unusual. It was an Eastern Tiger Swallowtail. Usually butterflies will flit from plant to plant and then leave. Photographing them has always proved challenging. This one stayed in the yard for over twenty minutes. It was if she were posing for the camera. I called Mike to see it and we watched for several minutes. I decided to get my camera and take some photos. I opened the window, hung out the side of the house and took about fifty shots.
There is a tradition among some that believe that the happy dead in the form of beautiful butterflies will visit their relatives to reassure them. A sign for those who are grieving. It is a comforting thought that Dad stopped by to say goodbye. There are those who would criticize me for being superstitious at this point. I prefer to look at it as a gentle kiss from God assuring us that all is well. After all, God is an artist and a poet.
Eldercare frequently throws you a curve ball. Just when you think you are in your groove, things change. That’s what happened to us this Thanksgiving.
Our plan was to spend the mid-afternoon with Dad and have lunch with him. He no longer knows the days, dates, or holidays. We do these things more for ourselves than for Dad, really. We visit almost daily and that’s what is most satisfying for him. But we still want to give him a sense of festivity so we try to make holidays special.
However, Dad woke up very confused. He was convinced it was WWII and that he had eaten something bad and was confined to bed and wasn’t supposed to eat. There are still times when he’ll have a kernel of truth, but embellish a story to make sense to his confused mind. So I went in search of the shift nurse to see if he’d had some sort of reaction to food lately. No, she said. He was just very confused. I went back to the room and tried a different tactic. In the past, I’ve been able to get him out of bed and dressed. And slowly get him out of his room to either have something to eat or go for a short walk.
But not this day. He was not going to get out of that bed. No way, no how, no time, no place. No. So I read a card his daughter had sent him, showed it to him and then after a very short visit, we left. The next day he did get out of bed, but still refused to eat. It may be that we’ve entered into a new part of this journey. Earlier this year, Hospice got involved with Dad’s care, but then he improved to a point where they signed off. We will be monitoring the situation and may be getting them back into the care team.
So this Thanksgiving, we are grateful for many things that include a great care team for Dad, for a lovely, safe place close by, and for the work and ministry of Hospice. Peace be with you.
Caregiving is stressful. There’s no way around that. Whether it is a parent, spouse, or child, it is emotionally and physically hard. When I’m stressed I turn to food. Sugar most often, but any kind of food will do. As a result, when I was caring for my mother, I gained a lot of weight. I had always identified with being slender, so the new reality was hard to adjust to. What better way to deal with it than denial?
But our sins catch up with us, whether we want to believe that or not. And my health has suffered. After Mom passed away, I had joined a weight loss group and lost some of the weight, and in my mind I only had about 15 pounds to go. Which stubbornly resisted. Then my focus went to my in-laws and while my weight didn’t go back up, I didn’t lose any pounds, either.
Fast forward to the end of last year when one health crisis after another hit. Diverticulitis, respiratory flu, high cholesterol, and a stabbing pain in my wrist that made me unable to even lift a pan out of a cupboard. A trip to the DenBoer clinic was in order and I really didn’t like what I heard. I didn’t need to lose 15 pounds, but 30. My half hearted effort at health care had to change. The first order of business was to get my gut back in good order.
Gluten free, dairy free, caffeine free, sugar free, supplements, and a walking program has done a lot for me in terms of energy, pain levels, and creativity. But the weight wouldn’t budge. Finally, I started keeping a food journal again and lo and behold - I’m eating too much. Just keeping a mental track of things was not enough. Writing down every mouthful gave me a reality check of what I need to change in my life.
I think that applies in all areas of our lives. Living with intention. Paying close attention to what we’re really doing instead of what we think we’re doing. The bible talks about that in the book of James. Chapter 1 verses 23-25 in the New American Standard says, “For if anyone is a hearer of the word and not a doer, he is like a man who looks at his natural face in a mirror; for once he has looked at himself and gone away, he has immediately forgotten what kind of person he was. But one who looks intently at the perfect law, the law of liberty, and abides by it, not having become a forgetful hearer but an effectual doer, this man will be blessed in what he does.”
It is so easy to know the truth, but to practice it? Ah, that is the challenge, isn’t it?
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.
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 firstname.lastname@example.org.
People who make a plan and work that plan amaze me. I make plans, and life blows up in my face making those plans unworkable. A couple months ago, I planned that I would end my employment on December 15. That would give the company plenty of time to find a replacement and to get product out for the Christmas rush. I was trying to be thoughtful of my coworkers and to be intentional about transitioning into the next chapter of my life. Good plan.
At least, I thought it was a good plan. Shortly after I gave notice, I was down for a couple weeks with diverticulitis, but took good care of myself and was up and running again. Bonus - I started losing weight and am back on track with my health. A little behind in all that we had planned for the holidays and with the book, but I felt confident I could catch up.
What I didn’t factor in was the virus from hell that was going to take me out the last week of work and beyond. Instead of celebrating with my coworkers, or going to Christmas and Hanukkah parties, I was in bed hacking my lungs out with gunk oozing out of every orifice. It wasn’t and isn’t pretty. I ended my run with a whimper, not a bang.
This was to be my week of new beginnings. Getting Christmas goodies baked, purchased, wrapped and delivered. Formatting slides into digital format for the publisher to consider. Connecting with people and getting the studio up and running. Instead of connecting, I’m in isolation and feeling quite sorry for myself.
But a dear friend made chicken soup for me and delivered it just now. When she saw me, she did her best to hide her dismay but it was clear that I look as sick as I feel. She offered to do some shopping for me and I decided to be clear about what my real needs are. We have plenty in our pantry, and Mike is still healthy. What I really need is human connection. So I asked her to email me every day with something newsy so I don’t feel so isolated. That’s my new plan - to stay connected no matter what.
It made me think back on when I was caring for my mother. As her care overtook my life, friends dropped out of my life. Not intentionally. Everyone has life issues they have to take care of and when I was occupied elsewhere, the spaces I left were filled with other people and other things. Many wanted to help out, but really didn’t know what to do. Some came along side me and actually helped with mom’s care. Visiting her, taking her out, taking her to church, and giving Mike and me a break. But that’s not everyone’s strength or ability and some just drifted away feeling helpless. Supporting someone doesn’t have to be a herculean effort - it can be as small as a weekly card or email to let them know they haven’t been forgotten.
If you know a caregiver, send them a small encouragement. It can be a lifeline. If you are a caregiver, let your friends know that you are in need of connection. Make a plan to keep your community strong.
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
The day before Easter was truly glorious with temperatures in the seventies and lots of sunshine. I spent most of the day doing yard work and when it was time to get cleaned up, Mike and I decided this would be a good day to take Dad out to dinner. We would celebrate Easter on Saturday since Sunday was supposed to be cooler and raining.
Dad, of course, had no idea it was Easter weekend. But he was having a good day and was happy to see us. He was willing to go out to dinner with us, so Mike signed him out and we tucked him into the car, buckled his seat belt, and we were off. The last time we took him out for dinner was to Olive Garden. He and Mom loved the Tuscan soup they serve but it was obvious that the crowds, the menus, and the attentive servers were overwhelming Dad. Since our goal was to have a pleasant and celebratory experience, I guided the car to Bob Evans.
While it’s not the first place that comes to mind when celebrating a holiday, it is smaller, quieter (at least on a Saturday afternoon), and easier for a dementia patient to navigate. Our waitress picked up that Dad had problems ordering and graciously worked around that. Dad got his burger and coffee and was happy. While we had the same conversation over and over, I was able to inject humor and keep Dad laughing and having a good time. Mike was greatly relieved.
I had brought my barber kit with me in the hopes of convincing Dad to let me give him a trim when we got back to the apartment. He was getting shaggy and we’d asked the aids not to give him trims anymore because it really upsets him. In his mind, he thinks people are shoving themselves into his apartment to sell him things and he’s agitated for days. Happily, during dinner Dad asked if we could stop and buy a scissors for him to trim his mustache. I told him I brought a kit to do the job when we got back and no coaxing was necessary.
All in all, it was a good day which made me so happy for Mike. He’s experiencing what I experienced when I was caring for my mother. When with other people, my mom and now Dad can be all smiles and very charming. But when I was alone with Mom she would be impossible. Dad is doing that to Mike each day when he stops in after work. He can be very unpleasant, agitated and demanding. There are times he accuses Mike of lying about Mom Kemper or about Dad’s memory and it wears on my husband. This day and outing was a gift and we appreciate it.
After we said our goodbyes, Mike and I were walking to the car together. I mentioned how nice it was that Dad had such a good day. Mike hugged me to his side. “You’re good medicine for him,” he said, and kissed my cheek.
With those moments of encouraging one another, we keep moving ahead.
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.