“What if” questions tumble through our minds our whole lives. From the time we are old enough to be told, “Don’t touch that pan! It’s Hot!”, our inquisitive minds promote the hand movement that will invariably desire to touch the hot pot. “What if I touch it?” In our latter years, the complexity of the answer changes, but the simplicity of the “What if” question remains. What if I choose a Lincoln instead of a Cadillac? What if I go with a two story home this time? What if I take that job? What if I retire?
The ‘What Ifs” are beginning to overwhelm me and yet, they can all be encapsulated with one very simple question: “What If this life I Hold in my hands is not the life I imagined 50 years ago? 30 years ago? 10 years ago? 1 short year ago? I imagined an amazing retirement with romantic moments on a sunset beach. Maybe a beach-front cottage for leisurely summer evenings and family vacations. Maybe a cabin on a gorgeous lake in the mountains for hot summer days or when we wanted to get away in the winter. I could imagine being snowed in with a roaring fire to cuddle up with my love and roast marshmallows for s’mores.
Those dreams are long gone now. The changes have come in rapid-fire succession like an M134 Minigun going off. I can’t catch a breath between the changes. I don’t even have time to twitch before another round is going off, piercing through the fog to the heart of the matter.
I am adjusting. I am finding my balance. I am sometimes going dark, hoping nothing else hits me. Other times, it duck-and-cover as the bullets of life whiz by much to close for comfort. Always thinking. Always planning my next move. I have no choice but to try to stay ahead of the game. I am on the verge of losing everything and am desperately seeking solutions to everything else. This is no way to live. I must find the answers, no matter how complex, no matter how frightening, I must find a place of shelter from the shooter in order to preserve what I still have in my hands. I have to have a plan in place before the kill-shot.
The shooter? Early-onset Alzheimer’s. The bullets are taking out brain cells every day. Sometimes I can dodge a bullet. I think I have forgotten something, but then suddenly it comes to me. I try to take a deep cleansing breath but sadly, there’s another bullet and it hits it’s target landing point blank in my memory and takes out several more cells.
I have notes I read every morning. I have a note now on the table when I wake up in the morning to remind me to read all my notes before attempting to begin my day. I have important things written down. Like letting my dog, JoyBelle out to potty. I remind myself to watch her the whole time so I don’t forget to bring her back inside. Notes on how I make my gallon of sweet tea every few days. I forgot that recipe for a moment so I estimated yesterday. When it came back to me, I quickly took notes. I have notes about my husband and children. What they do for a living, etc. I add to them every time I learn a new piece of info on them. This morning, I had to add my beloved hubby and the fact that he is seeing a cardiologist today. I did not know he had heart trouble and I thought he was keeping secrets from me. He dried my tears and assured me he is fine. I will not put one more ounce of stress on him if I can avoid it at all.
Early-onset or Younger-onset Alzheimer’s begins before the age of 65. That is why it is classified as such. The stages are somewhat varying but the first thing that goes is your short term memory. I do not remember convos unless I takes notes on who said what. Even then I still draw a blank sometimes. This usually happens for me within a couple of days. By a week out, I’m blank about even having a convo with that person. I have bits and pieces of visits, dinners out, fun times, but if it’s recent, it is going to elude me very quickly. I take a lot of pics and post them on fb to help me remember the happy times and important events. Even if they are only important to me.
I cannot remember doc appt’s or even the momentous upcoming events without my calendar or Alexa reminding me constantly about them. I lose the names that go with the faces of folks I have met in the last year. If I am friends with them on fb it helps, but sometimes I can see them in my minds-eye on fb, but cannot put the name with the face. I know this probably hurts the person’s feelings but I certainly do not mean or intend to forget them.
As more brain cells die off, it affects more memories and begins to encroach on longer term. I forget to change clothes. I forget to do my hair. I forget what I am supposed to wear. I forget we are going to church. I forget to put on my seatbelt and even where to find it in the car. My hubby has to get out and come around to help me when the seat belt bell tolls in our ride. I have forgotten how to make my coffee, how to work the microwave, and wonder why I have clothing patterns in a bin or why I would ever need a sewing machine.
I will eventually forget my precious family’s names, then their sweet faces. I will forget their likes and dislikes and how to best please them. This is the toughest part of the process for me. I cannot bear this idea in the least. My family is the heart of who I am, so how can this possibly be happening to me? I have lived for them.
I will eventually forget how to eat, drink and breathe. That is what will take my life. I will cease to exist because my memory will no longer exist. Small sections of my memory continue to die out until there is nothing left of me or for me. I am under a tremendous amount of self-inflicted stress and tension concerning what is coming at me with lightening speed. E-o A progresses much more quickly than regular, if you can call it that, Alzheimer’s. With E-o A, a good prognosis is 5-7 years. Since most folks have it for about 2 1/2 years before diagnosis, you can do the math. I think I am special and will have more time. 🙂
Nothing changes the fact that within just a couple more years, I will need full-time, 24-7 health care assistance. This cost is exorbitant. For in-home care 24/7, the cost would range anywhere from $9,000 for the cheapest health care assistant per month, to $21,000 for the best per month. Guess I should have become a home care assistant years ago. Patients with Alzheimer’s cost almost $2,000 more on the month at an assisted living facility but still only comes in at about 9 grand per month. Ain’t nobody got money for any of it, but if you have to choose the lesser cost and burden on your family in time, energy and monetary issues. nursing facility is def the way to go.
Since my current stress reducer involves my future care, I am making those plans now. I am letting my family know what I want them to do with me. That these are my wishes and choices and that responsibility lays with me. I used to believe the worst possible choice would be to go into a facility. My mother put my Grammy in one when she had dementia. My mother put my father in one when he had dementia. My sister’s brother-in-law was kept in his home and a lot of the responsibility for his care fell on her shoulders and I watched her health deteriorate in the process. My father-in-law passed recently with dementia and Parkinson’s and I saw what the family went through with him staying in his home throughout and what it has been like since he passed.
These are not choices my family will have to make. I will not ask nor will I allow them to keep me in-home. I know what this disease does to the person hosting it and to the folks hosting the Alzheimer’s host. It is a vortex of pain and emotion and there is no walking away. You can step away, but the disease marches on to it’s own cell-death knoll. Eventually, you’ll have to come back to even more devastating changes. I refuse to allow my husband or my children to bathe me and change me. It steals the dignity of all involved. I cannot, will not entertain that thought for a nano second. So as E-o A noshes away, I am putting my choices into action.
I have talked to two of my family members so far. The first one seemed fine with my choices. The second pretty much tore a strip off my hide. The tears and the words came fast and furious and it broke my heart, but not my resolution. I have two more to tell, but I need a little more time to compose myself again and do for them what they will not do for themselves. I don’t think they read these blogs and if they do, I pray they will still hear me out.
Sometimes, the purest love has to just let go. You release the bird you have been holding and caring for and it will soar to the farthest reaches it can and make it’s own way in the world. If you continue to hold onto it, when it was created to fly, it will die. You can try to domesticate a bird, keep it in a cage, and it may live longer, but it’s natural instinct to fly is still present and if you open that cage, that bird is going to fly and try to get to the open air. Short of clipping their wings, they are always going to struggle to fly.
As humans, we still have the innate sense of freedom, that urge to travel, explore, meet new people, try new things, soar on the currents life offers us. While I can no longer experience that freedom, I will not clip the wings of those I love to keep them tethered to home and hearth. The day may come when I will not know if they kept my wishes or not, but I am certainly praying that they will. I want them to lead beautiful, fulfilled lives. I want them to stretch as far as humanly possible and snatch every dream into reality. I want them to soar, to build, to experience. My children have a lot of living yet to do, and so does my husband.
When I was first diagnosed, I read many stories about the families and caregivers of Alzheimer’s patients. My impression of them was judgmental and cruel to say the least. As my mind fails me, I realize the best choice to be made is the best for all involved. It will never be goodbye. It will be “Take Care”, and “See ya soon”. There are things none of us want to experience, but learn to live through. There are things we never want to know, but do. And there is a love so deep, the only honorable thing to do is to set it free. Until that day comes, I will still enjoy time with my family and more time with my family. While I can still make memories that are good and healthy, I must still try to make them last.