SHOCK ~ DISBELIEF ~ DENIAL ~ FEAR ~ ANGER ~ SPEECHLESS ~ FLABBERGASTED
These are the responses loved ones and patients feel when they hear the dreaded words. “You have Alzheimer’s disease.”
Not one of us ever wants to hear these words, yet thousands & thousands of people hear this phrase each year.
“And so they sat in the doctor’s office, hoping for the best outcome they could imagine, something survivable, something surgery and rigorous treatment might cure…” (Anita Creamer, The Sacramento Bee). This is the distant hope, but the unreachable outcome families yearn for just before hearing the news.
“It was the first day we knew. It was the last day we could pretend.” (Joe Kozubik, The Atlantic.)
Before the words are spoken, there is a feeling. A feeling that you know, deep within your heart and soul. A feeling that tells you your life ~ your world ~is about to change. A feeling that brings panic and great sadness at the same time. A cacophony of feelings that spiral downward.
You’re immobilized. What should I do? What plans do I need to make? How can we survive this? Who do I need to talk to? OMG – we promised Mom we would never put her in a nursing home! Does Dad have a will? Who has the key to the safe deposit box? Does Grandma have long term health care insurance? WHAT DO I DO NEXT? How can we possibly separate Mom and Dad – they’ve been married for 60 years? I need help but my sister is in denial and won’t talk to me! H E L P!
Tears, short tempers and stress are a given within families when important decisions have to be made for/with a loved one with Alzheimer’s. So, what’s the game plan? Because there needs to be one. A few suggestions:
* Call a family meeting ~ Everyone needs to be aware of the behaviors that have been observed over a period of time and the doctor’s diagnosis. They need to understand what the future holds and what their options are for their loved one’s care.
* Keep a behavior log ~ This is helpful when going to see the doctor and when sharing information about how Mom is doing with siblings/relatives who live out of the area. There may be family members who question your understanding of what is happening or the doctor’s diagnosis. Maintaining a behavior log puts facts and observations on paper and can be referred to when needed, sometimes 6 months later.
* Educate yourselves ~ There are wonderful resources on-line, through the local Alzheimer’s Association and in literature. Check out The 36 Hour Day by Rabins and Mace. Education is key if you are to understand what is happening to your loved one and what you need to do as a caregiver.
* Establish your support system ~ Talk with each other regularly, attend a support group, and help the primary caregiver as much as possible. If family members don’t agree on much in life, they need to set aside their issues in order to do what is best for their loved one during this time.
This journey is long and hard emotionally, financially and physically. The more education you can glean and the more you can support and be supported, the easier the journey will be for everyone involved.
Photo Credit: www.familymeetings.com