She looked at me and smiled. She had lost a few pounds since the last time I saw her – which wasn’t that long ago. Someone told me that she has not been eating for reasons unclear to anyone. I smiled back at her and said “Holá, Mama Lisa,” and extended both my arms to give her a hug.
My grandmother’s following words, which were, “Do I know you?” immediately brought about a misty-eyed heartbreak. I had heard recapitulations of events that had occurred at my cousin’s house – which is where my grandmother stays. The stories seemed bizarre, and I found it hard to visualize the woman who had been the cornerstone of our family for so many years, any other way, then how I remembered her.
However, looking at Mama Lisa in her shrunken shell of a body and seeing her sincere, complete unknowingness of who I was in her eyes, Alzheimer’s disease became very real.
Approaching Life With Alzheimer’s Disease After Being Diagnosed: The Next Steps
The above is a real-life account of a man’s first encounter with a loved one of whom he had only heard got diagnosed as having Alzheimer’s disease a few months prior. Stories similar to this are being played out in homes all across the United States. Alzheimer’s disease gets its name from the doctor, Alois Alzheimer, who in the early 20th century first noticed a trend in the differences of brain tissue from deceased women who lived then that displayed today’s current symptoms of the illness.
Alzheimer’s disease (AD) is estimated to increase 40 percent among seniors 65 years old or older in the U.S. by 2025, which would bring the number of men and women inflicted with the disorder up to 7.1 million people from the current population of 4.1 million.
By the time Life With Alzheimer’s Disease is diagnosable, clearly and conclusively resultant in a person, then the deterioration of the brain has begun to cause the victim a detrimental decline in memory. Also, a predominant characteristic of the illness is the fading of lucidness and reasonable soundness. Eventually, as a person with AD advances through the stages of the disorder, an utter inability to perform everyday, simple independent tasks without monitoring or assistance.
As the dysfunction of AD has no reversibility or remission, and it steadily progresses as a person digresses, there will be a call out to all members of the individual’s support team. Each on the medical end of the spectrum, the financial side, in the professional arena or linked with the familial ties, will be obligated to give more attention and more time to the sufferer in all aspects of the person’s life affected. While Alzheimer’s disease is considered a terminal illness, it is emotionally unsanitary and psychologically unhealthy to view it as a death sentence.
For those with Alzheimer’s disease
There is undoubtedly a natural response to need time to process and accept an Alzheimer’s disease diagnosis. After exposing yourself to the core facts about the disorder and what you can expect to be conditional hindrances — appearing day-to-day as you adjust — it would be unfair for anyone to expect the positive approach right away.
Being told you have Alzheimer’s disease is not like being told you have a cavity or a bounced check. A filling nor a cash deposit can take you back to the day or even minutes before you got diagnosed. That does not mean, however, that life must ultimately change from clear, blue skies to darker days either. You may feel depressed for a while but an important thing to remember at all times is that the quality of your life does not have to decline. There is a stigma with the disorder that you nor anyone in your support team needs to subscribe to hopelessly.
Dorothea Fardy, the wife of Canadian journalist Darce Fardy, diagnosed with Alzheimer’s disease five years ago, when talking about the new life she now shares with her forgetful and clumsy husband, says, “When you can’t change it, you don’t really have much choice. You just get up, put one foot in front of the other, and find things to laugh about, things to fight about sometimes.”
Are you asking yourself how you can begin moving past your diagnosis? Here are some tips you can meditate on and hopefully find a way to execute to live an advanced life:
- Be real and forthcoming with your feelings about having the illness and allow others to be honest as well.
- Reserve strenuous activities for those periods of the day when you feel you can perform at the highest physical and cognitive capacity.
- When you are out and about, especially alone, travel with a “cheat sheet” which will have personal information that is important you may need to know. An ICE (In Case of Emergency) contact person, is an essential piece of information you can provide on the cheat sheet.
- Label cabinets and drawers to assist with easily being able to locate or store things.
- Try to spend time with any friends who may have expressed discomfort with your diagnosis and are not sure how to accept it. Let them know that seeing and being around them and for them to continue to be a part of your life is just as important as having your therapist or physician.
- Keep up with your original hobbies and if there is something you have not tried yet but have been considering for years, take the time to scratch it off your bucket list. Continue to enjoy the many opportunities life has to offer you.
- Ask for help when you need it. Build a solid, support team — clinically and among family and peers.
- Keep an activities diary. Set up structured days that can quickly become part of a routine. It will help you better keep track of when and how to do certain things.
- For more useful tips, check out this web page from Alzheimer’s Disease International.
For the caregivers
It is important that you understand that for you to take care of your loved one, you have to be able to take care of yourself. The road that is traveled when caring for a person with AD needs to have rest stops for respite — tending to your emotional and personal needs. There are many resources available that would be to your benefit for utilizing as long as you are caregiving. Educational workshops and support groups can greatly empower you and reinforce your strength which is the very strength your loved one will be reliant on — as their fortitude dwindles with progressive degeneration.
- As the illness begins to oppose all aspects of your loved one’s life, here are a few points to help you facilitate your caregiving:
- Educate yourself about the disease, to better understand the changes that await you and your loved one. The CDPAP program can also help with any financial strain that is put on you.
- Be sure you, personally for your mental and physical maintenance, receive proper support from a primary physician, counselor, support group community or other family members.
- Know that intuition may not be the best thing to rely on in all cases when up against your loved one’s sporadic, disassociated behavior – counterintuitive is typically best suited to handle AD.
- Get professional guidance as to how you can go about creating an environment that is safe and although necessarily stringent in many ways, not absent from comfortability.
- For more key points on caregiving, read over the fact sheets provided by the Family Caregiver Alliance National Center on Caregiving.
Learning that you or your loved one has Alzheimer’s disease means that life has opened a door for you to experience more intimate moments, explore and acquire new things, and do more to encourage living a full life — rich with positive experiences and possibilities.