It was my sister’s birthday a few days ago and because my mother has been sleeping more than usual we decide to visit her with tea and donut holes, instead of having a party.
I have bought a birthday card for my mother to give to my sister as choosing a card herself would be a task that my mother could not handle. The simple act of signing the card takes my mother an inordinate amount of time; often it is signed incorrectly or illegible. But she still understands that she should sign it.
We sit together and enjoy our cups of tea and I hand over the birthday card to my mother to give to Sue. My mother laughs and says thank you and begins to open it. Laughing, I remind her that it is Sue’s birthday, not hers. She laughs again. Then proceeds to open the card. I lean over and take the card from her.
“Mom, the card is for Sue. It’s her birthday today. Not yours.”
Mom takes the card from me and replies, “Of course, I know that.” But again, begins to open the card. (My goodness, this card is becoming worn now.)
Once again, I lean over to take the card. Finally, Sue interrupts us both and grabs the card herself and thanks Mom. My mother is still puzzled. Finally she wishes Sue a happy birthday! Hallelujah!
Minutes later, mom leans over and hugs me. “Happy Birthday, Marilyn.”
Oh, boy….we all laugh. Sue and I both thank Mom, in chorus.
These are the very times that are so wonderful and funny. But we didn’t always laugh during these “exasperating” moments. When our loved ones who have a dementia repeat themselves or repeat an action or ask a question (not once, not twice, but over and over, non-stop), our first reaction is puzzlement. Why is our parent doing this? After some time, our patience and confusion begins to turn into intolerance. Now we become annoyed; sometimes, resentful and angry. What really motivates our negative reactions?
I believe we react out of fear. Fear. Whether we are distressed, confused, stressed…the underlying emotion is fear.
When I cared for my father in their family home, I was anxious every day. I arrived about 8 am and stayed all day until my sister (who worked full-time) arrived after work. During those eight hours I stressed over everything…my father didn’t eat his breakfast (it’s my fault that he is losing weight); my mother sleeps all day – what is wrong with her?; my father is moving around upstairs…is he attempting to come down the stairs on his own?; my mother has an appointment with her physician, but she insists that I mustn’t breathe a word about my father’s health situation (just in case he is taken away from her); when I take her to her appointment, who will stay and care for my father?
The above is just a short synopsis of my daily routine and stresses. It should not be a surprise to anyone (especially caregivers) that my body could not keep up with the daily stress load. And I say this with complete love and forgiveness (for myself), that I subjected my body, mind and spirit to this daily stress because I lived in Fear! I could not (and did not) acknowledge my new reality which was that my father had Alzheimer’s and that my mother (in spite of her insistence that she could cope) clearly, could not!
The very simple fact is that I lived in fear, instead of labelling it “fear” and then dealing with it.
The Buddhist nun and prolific author, Pema Chodr0n, in When Things Fall Apart describes acknowledging our fear as if we are running from a monster (in a dream) and suddenly we stop, turn around and just face the monster. This metaphor describes fear as a monster perfectly.
At the risk of sounding trite, when we do not face our fears, the monster becomes bigger and bigger. For me, if I had acknowledged my emotions so that I could deal with them, I would have made better decisions.
I was running so fast that I ignored my mother’s symptoms, and I relinquished good decision-making.
If I had asked for help (which I did not because my mother insisted that she did not want any “outsiders” in her home) then I would have learned some important Alzheimer’s facts and management of the symptoms. I would have realized that Alzheimer’s can affect eating habits and I would have realized that many of the spouses of someone with a dementia-related disease ignore and avoid the diagnosis of Alzheimer’s; instead, many spouses “pretend” that nothing is wrong. I also would have understood that her resistance of physician appointments is often another symptom of the beginning stages of Alzheimer’s disease. (Many resist because deep down, they fear the diagnosis. They suspect something is wrong, but they are unable to face it.)
But because I did not ask for help, I did not learn that sun downing is a symptom of Alzheimer’s that prevents a good night’s sleep; I did not learn our mother was exhibiting some early signs of her own dementia and for that reason alone, I should not have followed her wishes.
Because I did not ask for help, I did not understand that my father was in the palliative stage long before I recognized that stage; and lastly, that all the love and kindness in the world was not going to heal my father.
I now understand (I get it!) that my family (my mother, my sister, my husband, our children, and myself) were grieving for our loss – long before our father actually died.
Grief walks with us the very moment that we hear the diagnosis and prognosis of Alzheimer’s or any dementia-related disease. We say good-bye repeatedly and that is why the experts have coined the phrase, “The Long Good-Bye” when they discuss the ramifications of the disease.
The person with Alzheimer’s or other dementia-related disease begins to change from the initial onset of the disease. Abilities that once were strengths diminish. (Our father used to excel at map reading or directions. In the earlier stages, he became confused in the grocery store. Later, the layout of his own home completely overwhelmed him.) Talents and passions disappear. Hobbies are discontinued. An avid book reader no longer reads. Someone who loved to spend time with the grandchildren shows disinterest in family gatherings. Often that person will shun family and friends.
In the later stages, our loved one with a dementia can no longer remember how to communicate, read, dress himself, etc. Many people are surprised when I tell them that Alzheimer’s affects the different parts of the brain, so that the simple act of sitting and watching TV is no longer possible. My mother rarely watches the TV because she cannot sit still. Often the images confuse and disturb her and that fuels her hallucinations, delusions and dreams. She cannot differentiate between reality and fantasy on television. I have noticed that other residents at the long-term care residence where my mother now resides “attach” themselves to a particularly sad or horrific news story and morph on it over and over. (Television should not be turned on unless the programs are monitored.)
When these symptoms appear, if you do not have any information about Alzheimer’s or dementia-related diseases, as family and as carers, we are frightened. And sad. There are few things worse than watching a loved one become child-like, dependent on others.
When we react with sadness to our loved one’s situation or circumstance, that is grief. Grief. We mourn for the past (what our loved one used to be) and we mourn for the present (what our loved one is now) and we mourn for the future (what will never be).
Both my sister and I have learned to recognize our grief and we have learned to “honour” it. But mostly we have learned how to let it go.
Each of us have our own unique ways of handling grief. Nature is our solace – for both of us. Sue visits the beach, kayaks and walks throughout the wetlands or forests. I turn to my garden, bird watching or sit by the water. Any water. Thankfully we live in a wonderful city that boasts of a river and a lake! Water connects me to my stillness; my connection to my soul.
Often I grab my husband and pick up coffees (sometimes not in that order!) and we drive to the waterfront. There we sit and watch the water, talking and sipping our coffees. Other times, we sit in silence.
I go to Nature to be soothed and healed, and to have my senses put in tune once more…John Burroughs
What we have learned is that grief is an emotion that is constant during Alzheimer’s; but that recognition of it is the first step to healing. Then, give it its space. Space will honour it (and our loved one and ourself). This simple act will lead you to “letting go” of it. And lo and behold, peace takes its place.
Another gift! We have learned that the journey that has led us here (to the Now) makes us who we are today.
And we have learned that when our loved one changes before us (and yes, eventually dies), those changes do not change the essence of someone. Their soul is still there. We have learned to connect to their inner essence; and to let go of their outer shell. That is what matters now.
We laugh and we enjoy the Now with our mother. The birthday card didn’t matter. Nor, my mother’s confusion over birthdays. That is the gift we give her when we spend time with her; it is the gift that she gives us when she spends time with us.
We have learned to connect to her essence, and that gives us peace.