HOW DID WE GET HERE?
As I barrel closer to the one-year mark of Mom going into a memory care facility. I am awe-struck at the year that has just passed. It is hard to look at my last year with Mom and its effect on my family and me without intertwining it with the pandemic, which we are still f*ing in and causing me to go bonkers - but that's a whole other post. If I pick apart the situation and try as best I can to separate the two, I still find myself at a loss. I guess my loss comes from what I envisioned this past year looking like and what it became.
When you have a loved one diagnosed with Alzheimer's, you hear the phrase "they die twice." How true that is. I would add that when you throw a global pandemic on top of that, they die three times. March 2020 was such a tornado that the "experts" helping guide Mom's transition had no road map for the pandemic's added stressor. Thus, we as a family were left on our rowboats paddling to shore with our hands.
Our family knew that moving Mom would be a massive shift in our family's way of life. And in the sandpile of human sorrow, our personal microscopic grain of sand turned into a grapefruit overnight. The fundamental reality was that Mom was leaving us. She was not going to be with us every day and every night. She was packing up and moving. And even though it was down the street, it might as well have been across the country because the void, no matter how short in the physical distance, was an ocean away emotionally. Yet, she is still with us. Physically she wakes up every day and stares out the window at the same weather I stare at too.
But I have been asked before, many times in fact, how did we get here? How did you know she was sick? What did it look like? How did you convince her to see a doctor? The short version is -it was a process. A very long process.
There was no specific day that we as a family woke up and said Mom is sick and needs to go to a doctor. It's not like she had a heart attack or broke her hip. She doesn't have cancer and there was no need to head to the ER. Thus, it is not as simple as broke, now fix it. The process is slow. Heinz 57 ketchup slow. So slow that my brothers and sisters and I didn't see the change for years. It was my Dad that was the instigator of it all.
This completely makes sense. He, like any spouse, sees it all. The day-to-day, the little fleeting moments of confusion that stand apart from all other things. The personal moments that only a married partner can see. And if you are or have been married, that understanding is accurate. No one can fully grasp the intimacy of who you are more thoroughly than your spouse. So, for us, it was Dad that brought it to my attention on a road trip, dropping Margot off at camp. We had a good 6 hours to talk alone and it all came out. With my medical training and professional knowledge, I was able to help Dad formulate a plan to get Mom to see a doctor. One of our first steps was to get my brother and sisters and Dad all on the same page. Communication is key and I think one of our families saving graces. Because in the end, our open communication about Mom ultimately kept her safe and happy. Regardless of communication, from that first conversation, it took almost a year to accomplish that goal.
The little quirks that Mom started demonstrating did not sink in as something wrong until after the disease was well on its way. And now, as I reflect, I try to place that one incident that I missed, and I can't. This disease is elusive. It creeps up out of nowhere and by the time you realize what's happening, you are too far down the road to turn around. And in our case, my Mom was sneaky. She was a mastermind at covering it up—a little laugh here or plausible excuse there. A "honey, it's nothing" or a quick change of the subject.
Part of it has to do with her generation. Born in 1941, she was raised to believe that seeing a psychiatrist or psychologist meant you were crazy and carried labels and judgment. Now, if you don't have one on speed dial, you are the crazy one. Thus, mentioning to Mom about trying to "see someone" about her confusion was out of the question. If we made any reference to a neurologic change, it was met with harsh criticism and some severe backlash. Never in public, of course, but every family has their private side. The verbal and physiological dance that our family performed to convince Mom to see someone was remarkable. One tactic we used was to say that "Dad had memory issues too, and he will get checked out once you go." We also tried, "we love you, and we just want to make sure everything is ok." We used the grandkids as a ploy; we threw dad under the bus more than once, we tried her primary care doctor, you name it, we tried it. It took us months to years to manipulate the situation just perfectly to get her to the neurologist. Think shoveling your driveway with a spoon.
I can't ask Mom now, but I am sure it was scary. And all that anger she showed us was rooted in fear. She had a feeling that something is wrong but not knowing what. It's nothing like- my knee hurts, head to the doctor, get an MRI, and then off to surgery for a new knee. If only it were that simple. The brain starts playing tricks on you and there are fleeting moments of total confusion, but the majority of your day is completely normal. The problem begins when these fleeting moments start happening more and more until the scale tips and you spend most of your day in confusion and only have fleeting moments of lucidness. And the downward slide continues until your brain ultimately gives way to the disease.
It is mind-boggling if you think about it. Each Alzheimer's patient presents slightly differently, except for some tell-tale signs that classify Alzheimer's from other forms of dementia. The protein build up in the brain is a hallmark of the disease. Additionally, I took some of the top signs and symptoms from the Alzheimer's Association website. They are - memory loss that disrupts daily living, having challenges in planning and problem solving, difficulty finishing familiar tasks, having confusion with time or place, having trouble with visual images and spatial relationships, new problems with words in speaking or writing, misplacing things and not being able to retrace steps to find it, poor judgment, withdrawal from social activities, changes in mood and personality. Many of these symptoms, coupled with an MRI of the brain, personal history and neurological test, make up for a medical diagnosis of Alzheimer's.
Hello! I have trouble with several of these symptoms in my 40's - what is the difference. First, I highly recommend heading to the Alzheimer's Association website to answer more of your questions. They are a fantastic resource. But one of the main differences between normal aging "forgetfulness" and Alzheimer's is that these signs mentioned above occasionally happen for normal aging, as opposed to once or more a day for an Alzheimer’s patient.
Additionally, when you forget something, the average aging person will remember it with time. "I can't find my keys; pause, oh yeah, they are in my car." Or they can retrace their steps from the day and find them; an Alzheimer's patient can't.
One of the significant indicators for us was the change in Mom's ability to have a rational reaction to things. For example, my kids had a cough, and the immense overreacting was not typical for a grandmother with 14 other grandkids. At the time, we didn't think anything of it. But looking back, it is clear as a sunny day. Now once I had that first conversation with Dad, I was on high alert and started spotting things much easier. However, it was a dance, Mom had not agreed to see anyone, but the warning signs were much more apparent to all family members. In public and with friends, no one would have thought twice about it.
Finally, we got her to the neurologist. They did neurological testing, took a history and personal accounts from Dad and me, and she got an MRI. After a full review, the doctor told us he was very confident that she had Alzheimer's dementia. I will never forget how sad Dad looked that day. Even though we had an answer to our questions and concerns, it still stung. The doctor talked about it with Mom, and at the time of her diagnosis, she expressed understanding. That didn't mean she did not continue to decline and unfortunately that understanding fades.
She would leave random things at home in the wrong place, like plates in weird spots, items in the freezer that didn't belong. Also, she started having a hard time knowing what the use of an item was. She was always social, so going out and being with friends did not change much initially. Change in her mood and personality has happened now, but that was not as apparent in these early years.
I am going to pop in one funny story because you have to have some humor with this disease, or you will lose it. This story is about understanding an object's use. She had finally been diagnosed, but fairly recently. I was picking her up to see a grandkids performance, and she was finishing up in the bathroom. We left and headed to school, where we would say a Rosary first and then off to the performance. I finally looked at her sitting in a church pew and her eyebrows were blue. Like bright blue - I mean what the what? I racked my brain because a week prior, I had cleared out her bathroom with anything harmful. What could have made her eyebrows bright blue? I tried wiping it off before the performance, no luck. I asked her, and she had no idea what she had done. We got back to her house and went straight to the bathroom to find a blue Sharpie on her vanity. Seriously! She had thought the blue Sharpie was her eyebrow pencil and Sharpied her eyebrows - I mean, you can't make this shit up. There is also another good story about ranch dressing in her coffee. That is for another day.
Numerous funny stories also are so sad if you let yourself go down that road. And now we don't have those memories being made because we don't live with her and see her day-to-day life. So much has happened since her diagnosis. There is the emotional side of life; there is acceptance and understanding of what this disease is and the future. There was the larger picture of keeping Mom safe and what that looked like with caregivers and Dad. The ball of twine that consists of the last several years is a mess of dense colorful yarn. I will try and write about all these in other posts to come. At this rate, I should write a book about it, but in a nutshell, that is how we got her diagnosed.
If you are struggling with a loved one that you may suspect has dementia or Alzheimer's, I would start opening the communication up within your immediate family. Gather all the stories from everyone so you can get a clear picture of what may be happening. And keep those lines of communication open. Then you have to assess whether your loved one is open to seeing a specialist or maybe starting with the primary care doctor. One big question upfront is, are they safe? Especially if your loved one lives alone. I suggest reaching out to a support group or friends going through the same thing. Reach out to me; I am always more than happy to talk. It is a dance, and it will take time, so be patient but pro-active. There is no one right way for all this, and as you and your family travel down this road, you will make mistakes, and that's ok. You will get to where you need to be.
If you have enjoyed reading this post or any of The Finney 411 blog posts, please share the love. Tell your friends, share your favorite blog post via Facebook or Instagram. Never miss a post by Signing up for my mailing list and following me on Instagram @thefinney411 for even more fantastic content.