Ah, “dementialand.” Truly a place you do NOT want to visit if you can avoid it. But we have it living in our house. Don’t be jealous…
I don’t think anyone can be prepared for the absolute drain of caring for someone with Dementia…and there are so many types of dementia.
Dementia: “a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.”
What no one tells you, is that each dementing illness has its own set of symptoms and those symptoms also vary from person to person, family to family, moment to moment. There is nothing static about dementing illnesses. There is just disease progression; no disease regression, or cure.
I am blessed with both parents having a form of dementia. My parents divorced more than 40 years ago, and I find it ironic that they are both now suffering from dementing illnesses, even though they are 1000s of miles apart. Each often asks about the other one, which is also very ironic. (Family history is for another time). My dad is exhibiting symptoms slightly different from my mom. His dementia is sometimes based in a Parkinson’s origin, but his new doctor is disputing that. So his official diagnosis is now up in the air. (Another irony is his wife also has dementia. God has me totally cracking up with that ironic situation). My mom was diagnosed almost 10 years ago with Alzheimer’s, a particularly heinous form of dementia. There are studies emerging almost daily online which promise a cure or abatement of some sort. Once you dip your toe into the water of dementing illnesses, you learn far more than you ever thought there was to know, about neurological diseases, and you find yourself on all these web sites, being referred by other caregivers, touting new discoveries. I think some days it is just a form of hope, written down for others to see. Little strings of hope dangling from this miasma of neurological diseases. But then your loved one does something particularly annoying, or particularly difficult to deal with, or even funny, and those strings of hope are severed yet again.
I used to collect clocks and watches. My great-grandmother had this wonderful mantle clock and I was lucky enough to inherit it from her. I also inherited my grandmother’s mantle clock. And I have inherited watches, too. My husband can tell you that pocket watches do not go through the washer very well! All these clocks had a wonderful sound all their own. Their ticking and tocking through the day brought me such comfort. I am such a huge fan of the “Winchester” chimes. But now, I really hate clocks and watches, and paying attention to time passing. Why? Because my mom is obsessed. She looks at her watch all the time. She can barely see the watch, even though we bought her a new one for Christmas with a lit and enlarged face, so she can see it easier. She looks at clocks. We have, in our great room, a total of 5 clocks, and she wears her watch. Sigh. She is constantly commenting on time: “What time do you have? I don’t think my watch is working” or “Oh my word, it is 4:15! Can you believe it?” and “Oh my goodness, it is 4:30. Where does the time fly?” And then, “Oh, it is 4:45! It sure doesn’t seem like it.” Followed by, “Can you believe it is 5:00 already?” Yes. All day long. About every 15 minutes. On the drive home from my son’s house on Saturday, a drive that takes about 25 minutes, she remarked on the time every 5 or so minutes. And I am NOT exaggerating. At all. It is just one of the many oddities Alzheimer’s has brought to the forefront for my mom.
Another one that has provided hours of conversation, giggles, tears, and slamming doors, is make-up. Most specifically, eyebrows. Oh my word. I recall more than ten years ago, speaking with my stepdad on the phone and he all-of-a-sudden he yells, “Oh damn. I hate those eyebrows! She is throwing her eyebrow pencil at the mirror and starting over. She has already been in there an hour!!” That was over ten years ago. Eyebrows have always been an issue for mom. She used shave off all but a little puff of hair near the center and pencil in the rest. She now has random white hairs on her eyebrow area, but you cannot even see them. She also wears glasses, so they hide most of her eyebrows, as well. And that gives her free reign to put them wherever she feels they need to be, in that moment. Usually, they are large, dark, vibrant, and on her forehead. The darkness or severity also changes with the color. She bought a color of pencil that I told her was too dark, but she insisted, telling me, “I have always worn this color. It matches my hair.” The next day, her brows became these large, vibrant orange slashes on the forehead of a woman with predominantly white hair. Our family chuckled enough times over the next few days, until I could not take it any longer, and bought her the right color. Well, I bought blonde, but I wish they had a gray eyebrow pencil. Ha-Ha-Ha. A mistake I made was I also bought her some new eyeliner. Huge boo-boo. The next morning, she emerged with eyebrows using eyeliner, and they were a masterpiece. Ha-Ha-Ha. She still does not understand the two pencils are for different purposes (and the eyeliner is dark brown. Yeah). Every morning, mom walks around the corner into the “great room” to say, “Good morning, my children!” in her cheery, annoying morning voice, and already her earrings and watch are on, lipstick applied, and EYEBROWS! Me? I am barely awake, chugging coffee. This morning I woke at 5:00 am because the state bird of Alaska is back – the dreaded mosquito in its various forms. One or two found me this weekend and I was itching like mad. I finally got out of bed around 5:30 from the endless itching and quietly walked to the pantry and applied my Purification Essential Oil to the bites (totally removes the itching) and then I started the coffee. I sat down to check Twitter and Facebook, and out walks mom. Sigh. “Good morning, my children!” Fully prepared for her day in her pjs, robe, socks, eyebrows, lipstick, watch, and earrings. And it was barely 6:10 am.
There are so many aspects to this disease that bring moments of utter clarity and joy. We have times where we are just laughing. And sometimes it is over innocuous things like a certain brand of Depends! We can laugh about our wrinkles and the desire for a milkshake in a random moment. We laugh at the dog’s antics. We joke about her not hearing things. We tease her about “climbing the mountain” and getting into bed each night. Her amazing hugs and, “Goodnight sweetheart.” And we relish those moments. This weekend was filled with all those other moments. And mom’s clarity of thought is becoming more and more diminished. In the dementia community, we realize these phases are sort of milestones or plateaus. Only they are not upward plateaus, but downward spirals that end at a certain point, until the next phase begins. And I believe these plateaus are points our loved ones reach, in a sort of negative way, and they never go back up a step. Never. We may have lucid moments, but we have to lessen our expectations, as they sink further into their own minds. This weekend was a space of two days in which Mom fell deeper and deeper into Alzheimer’s. Her world is becoming simpler and closer to home. She is singular in thought and on Saturday, she took 2 1/2 hours to get dressed. She changed her clothes twice. Her eyebrows, eyeliner, blush, lipstick was applied. She was dressed inappropriately for the weather, but was determined to wear what she wanted. We attended an open house for an amazing agency that has helped us so much, and she hated it. She wanted to leave. She was rude and pushy and did not want to be there. We left, after less than a an half hour (after taking so long to get dressed) and she was happier in the car, getting a cup of English Toffee coffee, and driving to my son’s house. It was so stressful. And after we had dinner, she was looking for her purse and she wanted to go home. Sigh. And then checking the time issue I mentioned above. Every. Five. Minutes. Sigh. (I sigh these days, a lot).
Mom is confused easily. And one of the interesting things is what amuses her. You can give her the simplest objects and they can keep her busy for hours. We are transitioning to these med packs, exactly as the ones above. It is truly going to change our lives. We were given a sample to bring home, filled with M&M candies. Mom literally ready every box. She turned it over and over. It kept her occupied for more than 45 minutes. And when I went to pick it up, she asked me why I was taking it from her. I told her it was a sample to show how her new medications would come. She did not seem to care for that, she wanted the M&Ms inside! Ha-Ha-Ha. I told her it was a sample and I had no idea how old the candy was. She was so disappointed. She then proceeded to fold and flatten the pharmacy bag it came in; refold it; flatten it; and then opened it and started over again. For over 1/2 an hour. I was told about a woman whose father-in-law who lived in a memory home. They used to ask him to help fold wash cloths in a large basket. He would fold them all and stack them up. They would take them from him, thanking him for his help, and about 30 minutes later, bring him back the same basket with all the wash cloths in disarray, to fold them all over again. He had no idea the basket was given to person after person, all day long. And it gave me an idea. I will bring out that sample packet again later today. We will see if it does the same thing.
I am having a hard time adjusting to this newest phase. My oldest son surprised me with a visit this morning. Mom did not even acknowledge his presence, neither did she even look at us. She snored so loud we both quickly looked over at her, but it did not even phase her. She was still asleep. And she didn’t notice when he left, and doesn’t recall he was ever here. She is still on the couch in her pjs, watching Steve Harvey do his thing. I’m doing laundry and blogging. She never notices when I come and go, nor what I am doing. She is awake – asleep – awake. Not motivated to do much of anything. And this is the backside of taking a step onto that lower plateau. It exhausts her, adapting to her new reality. Her world contracted again. And I am sad. Very sad. I can do nothing. And sadly enough, I enjoy these moments of her just snoozing, waking, and snoozing. She is much happier and not snapping my head off or asking the time. Ha-Ha-Ha. We sit here in companionship, adjusting to this new, lower plateau.
Just be prepared, when you enter this thing called Dementia. It is a journey. It is not an event. It changes literally everything about your life, as a caregiver. It changes the world of the person suffering from it. And you become more than you were before you took this on, and you become much less, at the same time. You learned to “step to the left” and not let all the moments that are horrid undo you. You also learn to take lots of deep breaths and just move on. You get some wonderful hugs and laughs and giggles. But you also get the time with your loved one, helping them transition to that last stage, where they say goodbye for the last time. And that, my friend, is a blessing.
A Caregiver’s Prayer
Dear Lord, help me better understand
and believe I can do what you ask me to do.
Forgive me for the times, even now,
when I question your judgment.
As I go about the many daily tasks of caregiving, give me energy.
As I watch my mom oh-so-slowly walk
across the room, give me strength.
As I answer her repeated question
just one more time, give me patience.
As I look for solutions to whatever
is the most recent concern, give me wisdom.
As I reminisce with her about the
“good old days,” give me a moment of laughter.
As I get to know my loved one in a new way,
seeing both her strength and frailty, give me joy.
As I sit beside my loved mom’s bed waiting
for her pain medication to take effect,
give me comfort.
Lighten my burden, answer my prayer,
and give me the strength to do what
so often seems impossible.
Give me a quiet place to rest when I need it
and a quieting of my anxieties when I’m there.
Change my attitude from a tired,
frustrated, and angry caregiver
to the loving and compassionate
one I want to be.
Remain my constant companion as I face
the challenges of caregiving
and when my job is through
and it’s time for me to let go,
help me remember she is leaving my loving arms to enter your eternal embrace.