It is much more fun writing about Doña Quixote, aka My Dementia, after the fact than living with her when she starts acting up
At the start of winter, Doña Quixote moved in from the cold on the back stoep into the kitchen, where she is dangling from a hook in the ceiling. I shouldn’t have been such a push-over in letting her in. Give her a pinky…
These last two weeks—since the start of the new year—the Doña has really been acting up. Even before Peter dislocated his shoulder on January 8, she was already messing with my head. However, she really shocked me when she tagged along to the hospital and sat heavily on my shoulder while my daughter Marissa and I took him to the Emergency Room: I was unable to fill out the medical information forms and find the right insurance cards to get him checked in. If it had not been for Marissa, I would have had a very hard time coping in a situation the likes of which I had managed (or could have managed) on my own all my life before: Marissa’s emergency room visits during severe asthma attacks and her broken arm, Newton’s broken collarbone and wrist, and Peter’s bladder cancer, prostate cancer, and kidney stones. But not this time.
Newton and Cheryl cheer Peter up with Starbucks coffee after his cancer surgery in 2004.
On Sunday January 8th, Peter was holding my arm in support as we stepped out from our garage onto the driveway. On our first step, he slipped and, still holding my arm, pulled me on top of him. My fall was broken, his injury probably made much worse than it would have been if he’d only borne his own weight. Once we got ourselves upright, it was clear to me that his injury merited a trip to the Emergency Room. He was as pale as the snow and his arm hung strangely askew by his side. I thought it was broken. As I helped him into the house, he looked as if he were going to faint, so I pulled up a chair to the kitchen counter for him so I could watch him while I phoned our kids. I had my usual confusions with dialing wrong numbers—it took about three tries before I got it right (I forgot how to get to the list of stored numbers), but otherwise I was calm.
After phoning both Newton and Marissa without success, I was going to call an ambulance, but just then they called back—Marissa first, and, when she was on her way across the block-and-a-half between our houses, Newton too from his house a few minutes away by car. By then Marissa was at out house, and we managed to get Peter into the car and drove to nearby Saint Marks Hospital, which I knew was in our insurance network. Why not call the ambulance directly? First, I did not know if an ambulance would necessarily take one to a hospital of your choice. Second, and most important, I wanted someone from my support system by my side. And just as well…
Peter and Marissa in 2006
After Marissa had helped me do the paperwork and find the correct cards from my and Peter’s wallets, I turned out to be a hindrance in helping Peter take off his shoes and belt and so on—I got confused about how to undo the knots in his laces and worse, I kept forgetting which was his injured arm, touching it and hurting him. Fortunately I was together enough to know that I was in the way and moved to a chair against the wall so that Marissa could help him instead. It was clear that my confusion was not just in my mind—Marissa acknowledged it and started taking care of me too, hugging and reassuring me, and fetching me coffee—on top of taking charge of the communication with the medical personnel. She became, among other things, Peter’s advocate for more pain medication after two shots of morphine had barely taken the edge off the pain. After two hours of unrelenting pain—even a medication the nurse had administered after the morphine gave hardly any relief—Peter’s X-rays confirmed that he had dislocated his shoulder, as the doctor and nurse had suspected from the beginning. At last, pain relief came when he was anaesthetized so that his arm could be “reduced”—that is, manipulated in order to get the humerus back into the shoulder socket. When he woke up after only a few minutes, the pain was virtually gone. Even though the hospital discharged him with a Lortab prescription, he has not had to take anything other than Ibuprofen since getting home—which does not mean that he hadn’t had pain, though: for the first week he slept no more than two hours at a stretch because of persistent pain through the night.
One of the things about having dementia that most people might not know is that even the slightest change in routine—especially those involving sleep and the timing of medications—can launch a person into a madwoman-in-the-attic state. Given that I got up at night with Peter most of the time for the first few days at home to help him to the bathroom and get his pain tablets, I soon became as sleep-deprived as I had twice been with a newborn at home. In those days, however, I could function almost as well as usual the next day. This time, though, I was completely nutty.
First, I got confused about taking my medications: I took the morning medication in the evenings or vice versa; sometimes I took both batches at the same time. Some days I skipped. I would realize my mistakes after the fact. Even when Peter helped me remember, I would come back later and forgot that I had taken them and swallow another batch. Or I would forget that he reminded me and not take them. I just could not keep things straight.
Second, while helping Peter to shower and get dressed in my sleep-deprived and over- or underdrugged state, I was totally confused and could not figure out what the next step was in a routine task—such as what to do after I’d buttoned his shirt—without him telling me: tuck it in. One time when I was helping him put on his shoes and socks, I accidentally fetched an unmatched pair of socks and had to go back to his closet to find a mate. A few minutes later, he called me. “Have you found the socks yet?” I actually had. However, I had forgotten what I was going to do with them and had started putting them—plus another bunch of laundry—into the washing machine.
In this quixotic manner, we somehow got through the first week. Both Newton and Marissa offered food and help and driving—after the first day, we mostly managed with what we had at home; we took Uber cars to doctor- and other appointments. Our sleep-deprivation continued the second week, that is, until Peter started physical therapy with a veteran reliever of joint-related maladies, who told him to get one of those long, soft body pillows to hug at night, like you would hug a tree/or your wife? if you weren’t too scared to go near her because she constantly hurt your arm? From the first night with the pillow onward, we’ve both had many-hour stretches of deep, sound sleep.
Unlike Peter’s two remarkable instant pain relief experiences—after the shoulder reduction and the adoption of the pillow—my confused state did not immediately clear up. It is only now—after almost a whole week of good sleep—that I have returned to my “ordinary” craziness.
There is a maxim among caretakers of older people that every time the old person gets an injury, he or she will almost never recover to the same level of health as before—you may get better enough to resume your life to a large extent, but the damage done by a broken bone or a bout of pneumonia, together with the anaesthetics and other medications used in fixing it, puts you a step behind where you were on the health curve before your mishap. So it will be with Peter’s shoulder injury—which, we tell ourselves, is okay, because he has no desire to play racket ball or take up rock climbing. It seems to me that the same maxim holds for an injured brain. My experience has shown that every time I have a Doña Quixote episode, I get better again to some state of “normal.” Normal, in this context however, is a downward-trending state of being. Six years ago when Peter lay curled in the fetal position on the floor of his study with what we would learn were kidney stones, Marissa took us to the hospital too—already then I could no longer drive. Then, though, she functioned mainly as the driver. I was the one comforting Peter and communicating with the doctors. The difference in my coping skills between that time and this past January Sunday is big enough that everyone in our family noticed it. I may be the one who has spent the most hours brooding on it, though: I have seen a bit deeper into my future.
Tonight I am very glad that I am functioning better. I am grateful to have been granted another interval of self-reflection, of a mind that works well enough so I can write. Someone else can always help Peter with his socks—it is only I, though, who can tell about the joy of having a vacation from dementia, of being well enough again to write—and about the crowning bliss of being able to love people better this week than the last.
January 18, 2017 @ 5:54 am
Jy is ’n baie dapper vrou. Sterkte
January 19, 2017 @ 4:38 pm
Rene, jy gee my baie meer krediet as wat ek verdien–ek doen maar net wat ons almal doen: evalueer die skades van ouer word, aanvaar die nuwe “normaal,” en geniet elke dag saam met die mense wie jy lief het. Baie dankie vir jou ondersteuning, altyd. Dit beteken so baie vir my.
January 18, 2017 @ 8:05 am
Dear Gerda and Peter
What an incredibly difficult time you all have gone through! It is wonderful that the whole family was involved in such a loving team spirit. The good news to us is that both you and Peter are over the worst of the trauma and have seen light at the end of the tunnel.
Love
Cliff and Ria
January 19, 2017 @ 4:36 pm
Dearest Cliff and Ria, You are both so wonderful to keep in touch every time I post something. IN retrospect our first part of January looks much better than it did while we were in the middle of it. Peter has recovered marvelously–of course a competition between himself and his physio’s other (imaginary) patients so he can be the best! He has a lot of rotation back when she lifts his arm, but he just can’t go higher than his shoulder by himself yet. The pain is much better,though, and we are so grateful for that. Miss you guys–we’ll have to skype soon so we can see you. xoxoxox
January 18, 2017 @ 4:10 pm
Dear Gerda,
You continue to amaze and impress me with your determination to live your life in a normal way. When things happen to change our “normal” we have to readjust and define a new “normal” It isn’t always easy to do that. May you never lose your ability to write and express yourself for those of us who can learn so much from you. Thinking of you and Peter and glad that you have each other to live with and love.
Peggy
January 19, 2017 @ 4:33 pm
Dear Peggy, I so much appreciate your support and beautiful, kind comments. I really do just what all of us does, as you state so clearly: make yourself happy with a new “normal.” That is the price of being lucky enough to grow old!I am happy for you too that you have Larry and your family with whom to live in love.
January 18, 2017 @ 4:58 pm
Lovely and moving as ever, Gerda. These aren’t tears in my eyes, I swear–it must be raining in here.
I think we should all have some glimpses into our future so we appreciate the present more keenly.
January 18, 2017 @ 5:19 pm
Dear Keir, thanks so much for your kind words. It’s wise what you say about everyone needing to glimpse one’s future–time goes by so fast, especially if you measure it by how fast your kids are changing and growing up. Kirstin told me your kids were getting so big and were so much fun over Christmas. Thanks, too, for your note about Javier Ramirez. I will definitely attempt contact with him. All the best for you and your lovely family.
January 21, 2017 @ 6:18 pm
Hi Gerda,
thank you so much for helping me to understand what my mother went through and what is probably waiting for me too, in about twenty years or so when the visible signs will set in. My aunt and my grandmother were the trailblazers… and my mother is now in a much more advanced stage of Alzheimer’s than you are. We take comfort in small pleasures.
Unmatched socks are no big deal: my stepdaughter will soon be 34 years old and she does it all the time- on purpose! For Christmas we bought her two pairs of upscale wool ski socks and chose them so that there could be some harmony between the colours when mismatched. As a thank you note, and unprompted, she sent us a picture wearing the mismatched socks.
January 23, 2017 @ 8:30 am
Hello Ingrid, So lovely to hear from you, albeit with the grim news that you (reluctantly) anticipate joining the club of Dementers, a group I certainly wish no-one to be a member of! I did not know that you’ve experienced Alzheimer’s at such close quarters. I love your story about the mismatched socks–I love them much more as a deliberate fashion statement than as a “mistake!” I do hope you’ll drop by Utah again in the future and pay us a visit–I’d love to catch up on your life. xoxox
January 23, 2017 @ 2:41 pm
Dear Gerda,
My more or less regular trips to Utah have stopped since I no longer work for Rio Tinto (Kennecott as it is known locally). However, I would sure love to see you and Peter again. I may just take you up on your invitation.
I find your blog very valuable. This is my mother’s story.
Edith has always been a little “special” and I realize with some regret that I did not allow her to tell me what she was feeling because I was always trying to humour her instead of being receptive to her small disclosures of frustration and inadequacy. I provided solutions (she might have said: “just like a man”) instead of trying to understand her and just listen.
Edith was widowed at age 65 and soon after, she gave me a Power of Attorney to be validated if she were to become unable to make decisions for herself. I do not think that she was contemplating any incapacity due to a dementia related illness. To cut a long story short, I had to involve a social worker and a notary in order to have her “declared” so that I could take control of her assets, including selling her house to raise the funds to provide for her care. This did not happen until she was 81 years old but I was grateful to know that she had entrusted me to look after her affairs so many years before.
We realized that she needed some help when we came to visit her at Easter one year and I asked her where the car was. She sheepishly told me that she had taken a short-cut home and it was “in a field”. The Canadian Automobile Association refused to tow her out and the farmer had given her a few days grace to find a way to remove it… we towed her out with our Jeep and that was the beginning of follow-up tests that led to a diagnosis of Alzheimer. She was 79 years old and very resentful to lose her driver’s license. I made arrangements with a local taxi company to open an account which was billed to me and she could get a ride home that way from wherever she was and she didn’t need to have any money on her. It took a while for her and the taxi company to get used to it but eventually she seized the opportunity to go to her appointments without having to lean on friends for a ride. She never accepted that the cost was minor compared to the cost of maintaining a car, paying for gas and the insurance but she was grateful nonetheless.
I appreciate now that she was struggling alone for a very long time and that while she may have been in denial herself, I could have been more sensitive to her needs instead of teasing her about many things, like labeling the bathroom door. She made some excuse about having had guests and trying to be helpful but the sign didn’t come down… I never realized how confused and frightened she already was.
We had a big bash for her 80th birthday so that all the friends who knew her could celebrate with her before Edith forgot altogether who they were. That was nearly six years ago.
She was very fortunate to have met a new man, George, when she was 75 years old and he has been very kind, and generous. Eventually, I heard stories from George that my Mom would get lost and strangers would take her home. I checked with the local police and indeed there were reports of having been found walking on the shoulder of the highway carrying grocery bags. Edith and George moved into an apartment in a seniors’ residence so that he could keep an eye on her. Imagine living together with your “boyfriend” for the first time, after all those years. It was quite an adjustment for both of them. Eventually, it was agreed that it was too difficult for George to look after Edith and she moved into an Alzheimer’s residence in 2015. George lights up her life and he continues to visit Edith on a regular basis even though it’s a one hour trip one way.
January 31, 2017 @ 7:47 pm
Dear Ingrid,
What a fabulous story about your mom, Edith. Everything you tell me speaks of your love and concern for her. Please don’t second-guess how you responded to her. I am always astonished at how relatively well people with dementia still seem to function outwardly even when they have already declined a lot. I just think there is no way of knowing whether you have to coddle someone or just listen to them or solve their problems until they tell you–and when someone resists the idea of her own dementia, she will of course not tell you that she really needs help. I think the way you have taken responsibility and the difficulty you went through to get her “declared” and then arrange her transportation and eventual move to an Alzheimer’s residence are testament to your caring as, all the while, you “learned on the job.” I think there is no other way for a family member to figure out the person’s need. But I am glad my story gives you some insights–but I NEVER want you to feel any guilt. Remember, you are living through it as a caretaker, the hardest job there is! I;m so glad for Edith that she has you–and George. What a beautiful story. I would love to write a blog post about Edith’s story. Would that be okay for you? and could you maybe send me some photos of her and you and George and everyone else involved in her care? I wish you all the best. And do come to visit when you can. For the next few months I have to keep my calendar relatively cleared for possible trips for book promotion, but if we know about your trip a while before, I am sure we can schedule to fit it all in. Warmest greetings, Gerda
February 1, 2017 @ 8:01 am
Dear Gerda, thank you for your interest in Edith’s story. Please give me an e-mail address to which I can send you some photographs.
February 12, 2017 @ 11:42 am
gerdasaunders@gmail.com
Thanks, Ingrid, that would be lovely.
January 22, 2017 @ 7:44 pm
Oh Gerda. I’ve been so internally focused since losing Atticus I didn’t realize the extent of what was going on with you and Peter until I read this. How rotten And yet, you (and Peter under your good guidance I’m sure) spoke so eloquently and memorably and perfectly at the time of our deep pain. Thank you forever and ever my dear heart. I love you so much
January 23, 2017 @ 8:37 am
Dearest Shen, Thanks so much for your lovely note–I can’t imagine you would even have time to look at my blog with so much stuff going on in your heart! Peter and I are doing just fine–remember that I can only write about miserable events once things are better and after I have somewhat processed them. (Or rather, writing is the last bit of processing that we “writers” do…) I think of you every day and my heart is stretched to a long point in your direction. Thanks for your ver sweet words about what Peter and I said during the lovely remembrance of darling, beloved Atticus. I hope things are getting better for Marissa and family–of course it’s ridiculous to think their pain could have lifted somewhat when the loss of Atticus is so very, very recent–I just hope that the need for daily things like taking care of the kids and figuring out how to restart their house is providing some path toward getting up and moving every day. Love you and yours so much.