Alzheimer’s disease is known by many as the long goodbye, but it’s a goodbye for caregivers that doesn’t have to be experienced alone. That was one of the lessons from a series of articles I’ve written this year.
When I started the journey as a writer wanting to know more about those who are caring for loved ones with Alzheimer’s Dementia, I thought I understood what they were going through because I also have experience in being a caregiver.
Was I ever wrong.
I am currently the guardian and caretaker for a friend who was partially paralyzed from a stroke 14 years ago, so I have experienced some of the feelings other caretakers experience.
When I was diagnosed with a life-threatening disease and given a year to live, my mother and I decided to move in together.
She was to be my caregiver. Ironically, I went into remission almost a year to the day I had been diagnosed.
My mom and I lived together for six years before she developed cancer and congestive heart failure and passed away a year after her cancer diagnosis. The cancer was gone butthe congestive heart failure had taken its toll.
I realized after the first story I wrote that I knew nothing of what the caretaker of a loved one with Alzheimer’s goes through. While interviewing the caretakers and then reporting their stories, my understanding of the disease deepened as did my knowledge of how it affected those involved.
For those who are suffering from Alzheimer’s Dementia, many start to slowly lose touch with reality. The people they once loved and cared for become more and more insignificant as their minds start to wander. A few make the decision for their future care when they are still lucid enough to do so.
As the caretaker watches his or her loved one drift away, they are left alone with their long goodbye.
In the early stages of AD, many people retain their social skills and their care for their personal appearance and hygiene. Healthcare officials say in the beginning keeping them at home is the best thing to do as it helps them with their memory. As the inevitable transition is made to the nursing home, the patient — now resident — sometimes has fear knowing that their life is changing.
For the families, especially the one making the decision to make the move to a home, there is pain and guilt, but is many times accompanied by a sigh of relief. The responsibility and stress-filled days of being a caregiver have lessened.
For the person with Alzheimer’s, their personality changes over a matter of time and the person the caregiver once knew slowly slips away — replaced by someone the caregiver barely knows. The sweet, gentle person may now have anger, apathy and paranoia, or may have misplaced affection for someone else.
Counseling is recommended for the AD sufferer and the family. As the dementia worsens, it is the caretakers who need additional counseling. The grieving process of losing a loved one to the disease is part of the long goodbye the caretaker is feeling.
One thing that stuck out to me in sharing the stories of the caregivers was that most had a sense of humor; however, it is sometimes masked by the pain and suffering the caregiver is going through, depending on where they are in their journey.
I learned that many times it is helpful becoming part of a group composed of others who are going through the same process. Although it may take time, caregivers are encouraged to become involved once again with friends or neighbors who may have drifted away, make new friends, take up hobbies once abandoned or get involved in something new. Doing so can provide a time for conversation which may include a simple exchange of information, or possibly the aforementioned return of that sense of humor.
The long goodbye does not have to be experienced alone.