When Dorothy’s Kansas City farm house finally landed out of the tornado, she emerged only to find herself in a very strange new land. After receiving the Alzheimer’s Diagnosis, Richard and I, much like Dorothy, found ourselves to be in a strange land. Also like Dorothy, we did not want to be there. Unlike her, however, there was no escape for us, no clicking of our heels in an attempt to return to the life we believed we would have. Our new whereabouts was no dream. It was a nightmare!
It is so hard to convey to the world around us, what it is like when you hear the words, “the tests indicate, you have Alzheimer’s Disease.” I recognize that if you have received a diagnosis of cancer or any other health related disease, life for you and your family have been altered to be sure. The outlook may not be promising. It is scary and devastating. The writings of this blog are never intended to make light of anyone else’s situation. But, one thing that sets Alzheimer’s Disease apart from other maladies is the immediate recognition of the fact, there is no hope. In the midst of hopelessness, the process is understood to be both long and tortuous, not only for the victim but for those who love and will ultimately care for them.
So, what do we do now that we’re in this “strange land?” Since my personal journey through Alzheimer’s has ended, I have spent a lot of time thinking about what, if anything, could be done to make the “trip” more tolerable.
One of my observations is that immediately following the diagnosis, a vacuum of sorts begins to develop, involuntarily driven, by a multitude of emotions, such as fear of both the known and unknown as well as the embarrassment of having to bear the stigma associated with “losing oneself.” As long as the world has been dealing with and recognizing AD, unfortunately, general ignorance surrounding it still prevails. In an earlier writing, I explained how friends and people in general, don’t know how to respond to this revelation. I guess we can be grateful we don’t still react as was the case one hundred years ago when precious people were locked away in isolation. But, this “vacuum” is yet another kind of solitary confinement; one perhaps more humane but nonetheless misunderstood.
In spite of everything we do not completely know about AD and other dementia’s, I believe all human beings dealing with brain disorders deserve to be treated with dignity and recognized as a contributing part of the community until they take their last breath. To accomplish this, they must be given autonomy though it may require a shift in our thinking and planning. I would like to share some ideas to help do this.
First, as much as it depends on you, do not allow a breakdown of communication to take place. To navigate this “new land,” you must build an alliance with others who can help you make the best of the situation. As the title of this blog indicates, you will find Treasures of Darkness if you will only look for them. God promises to be with us always, and no disease has the power to take away this reassurance. I encourage you to allow God to be at the Head of your alliance community because He alone knows your complete story from beginning to end. He wants to be trusted and included in the plans for this journey.
Next, actively solicit ideas from the person who is enduring the diagnosis personally. Particularly in the early stages of a diagnosis, someone with AD is usually able to articulate their feelings and have a keen sense of the future. Allow them the opportunity to tell you what these feelings and thoughts are. Along this same vein, consider designing and creating a book, together, of the information, gathered. If a silent vacuum is allowed to exist, valuable data will be lost, which may consist of ideas that, as the disease progresses, could help the support system maneuver unforeseen obstacles. Activities and exercises, for example, the precious person (further referred to as PP) genuinely enjoys, should be recognized and taken into account.
For example, in my husband’s case, a dear and long-standing friend wanted to spend time with Richard. Naturally, the friend wanted to do something of interest to pass the time, so he brought art canvas’s and paints to create an activity. As sweet as the gesture was because Richard had never had an interest in art or the creation of it, he became agitated when our friend would visit. AD steals all built-in filters, so my anxiety was heightened because I didn’t want our friend to get his feelings hurt. If in the beginning, we had set forth Richard’s personal preferences of how he would like to spend time, this scenario might have played out differently and much angst all the way around could have been avoided.
Create a book. One chapter in “the book” (give the book a personally meaningful name) might be of memories the PP or the family together can recall. You could plan outings where you share old photographs and take new ones. Put these into the book along with written takeaway of the moments at hand. Make no mistake. Times, such as these gatherings will be bitter-sweet to be sure. In addition to some laughter, they will no doubt evoke tears of sadness. Whatever happens, there is one thing for certain; your precious person will have received the gift of quality time which is the very thing they long for and is of the utmost value to them and you.
If young children are part of the PP life, draw them into the circle. Our grandchildren loved Bapaw (Richard’s granddaddy name.) One of the sweetest memories for me is of the four final days of Richard’s life. The master bedroom in our home became the gathering place for family and friends. As he lay in his bed with no visible sign of consciousness, we never left his side for even a second but instead, did every activity that would otherwise have been natural, such as eating, drinking, laughing and having a simple conversation. The children would entertain us by putting on plays they had made up. All the while, I believe these “normal” activities in the midst of this abnormal atmosphere created a sense of peace for all, including Richard to the extent of his awareness. Our grandchildren to this day, while sad with their loss, can speak of this experience without fear.
For now, I will leave you with the challenge to think of how you can make your time in “Oz” work for your precious person, you and others who will be with you on this journey. Grieving will come naturally but please, do not allow AD to take from you what you do have the power to control. God created us to be creative in our thinking. Use your creativity and that of your PP, family and friends to make time purposeful. Be pro-active instead of re-active whenever possible.
So, you have heard the words, “the tests indicate, you have Alzheimer’s Disease!”? Welcome to “Oz.” YOU ARE NOT ALONE! And let me tell you, that Wizard behind the curtain, is no wizard at all. He is God and for as long as you are here, He will give you all of the wisdom, courage and heart you will need, not only to endure but to flourish. Trust Him and seek Him because He loves you <3
Until the next time…