Alzheimer’s disease is a family disease, wouldn’t you agree?
Whichever way you view Alzheimer’s disease, as a physician/healthcare provider (helping families make health care decisions), long-term care administrator (helping families by providing a safe living environment), gerontologist (studying and preparing for long term effects on families and society), paid caregiver (helping to relieve everyday strain on families) , family caregiver (providing direct, loving care), or as a family member with a loved one living with Alzheimer’s disease, it would be hard-pressed to not find a way that Alzheimer’s disease is a family disease.
Most articles discussing the impact Alzheimer’s disease has on families and relationships are rather gloomy, to be honest. It’s true, Alzheimer’s will change families! Roles will change. Expectations will change. Feelings will change. Guilt, grief, loss, anger may be commonplace.
But you know what?! This isn’t that type of article!
I’m here to tell you the good news!
Alzheimer’s disease can bring many rewards to a family! Unconditional love, endurance, patience, enjoyment in simple, everyday events are a few rewards to look forward to.
Alzheimer’s can also spark creativity and innovation!
Alzheimer’s disease and related dementia has touched my family 3 times. I started my journey living in an Alzheimer’s world in 1998 when my grandfather was diagnosed with Alzheimer’s disease. A few years later, it was my grandmother’s turn. And then, as if that wasn’t enough, in 2013, my dad was diagnosed with Stage IV glioblastoma (brain cancer), which led to frontal lobe dementia.
I was a non-paid, family carer to all 3.
Caregiving is never easy. All experiences create different challenges. Frustrations abound! Needs are great!
That’s where I found myself after being a full-time carer to my grandmother, Granga. As much as I loved my Granga, I was not prepared, and overwhelmed by the challenges of being an Alzheimer’s caregiver. The biggest challenge and frustration I faced was in the difficulties with communication.
I was underequipped.
I have forgotten to mention that while caring for my Granga, I was also a first time mom to our young daughter. As difficult as that would be to do in itself (rearing a child and caring for a grandparent), my sweet girl also has autism.
Both Alzheimer’s disease and autism pose major challenges to “normal” communication techniques. My loved ones weren’t going to adapt to my style of communication readily, so I needed to adapt.
Verbal communication is often overwhelming to persons with dementia and Alzheimer’s, so I tried to put my words into pictures for my grandmother. I would show her the picture prompt and follow this with a short, one word or single, step instruction. This worked well. As an added bonus, this technique worked well with my daughter.
These experiences led to what is now my passion filled product and business known as, Caregiver Cards. After my Granga passed away, and I had more time to give, I started drawing illustrations (while my kiddos were in bed) that could be used as prompt or cue cards for caregivers to use. My daughter helped with this. I would show her the picture and if she could say the word/phrase I intended then we kept the card.
Caregiver Cards is a picture-based communication aid for the care of adults with memory or speech disorders due to stroke, traumatic brain injury, Alzheimer’s disease and related dementia, autism and other developmental disabilities. Caregiver Cards is comprised of 155 illustrations and is broken down into 6 subject categories (activities of daily living, instrumental activities of daily living, activities/action, commands and prompts, feelings and emotions, and events, places, people).
These cards improve communication and promote independence as well as reducing anxiety for both caregiver and client/family member alike. Many caregivers feel it is an essential aid for helping adults understand and engage in activities at home or in residential care or memory care settings.
Caregiver Cards works for persons living with dementia by understanding that in persons living with Alzheimer’s and dementia visual communication is retained easier. Why? Because visual processing is less taxing on the brain. Short, visual prompts also help train carers to offer less cluttered words and steps while speaking to individuals with dementia.
Additionally, visual communication usually involves the reading of prompt or cue words, and persons living with dementia can still read. Yes, it’s true! Why? Because reading is an automatic habit, known as automaticity. So, if our loved one with dementia was literate as a child, they should still be able to read well into the disease process.
Anything that we can do to “reduce the thinking to get the message across” works to benefit persons with Alzheimer’s, including visual prompts like Caregiver Cards.
My challenge to whoever is reading this article is to turn the depth of your struggle into the height of your success. Success is rooted in action. Successful people keep moving. They make mistakes, but they don’t quit.
Don’t quit on yourself or your loved one. Don’t be afraid to have help. Don’t be afraid of the journey you’re on. Great success lies ahead!
10 Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. 1 Peter 4:10 (NIV)
To learn more about Caregiver Cards and Barbara’s story, visit @ www.caregivercards.biz