WHAT WE WOULD LIKE YOU TO KNOW, but are too afraid to say:
The following blog is written specifically for the individual who truly wants to better understand how we caregivers think and feel. As important, it also conveys what our families are going through, and most importantly, what our loved one, stricken with dementia, shares with us.
If you were forwarded this blog, I imagine you are cut from the same cloth as our Forgive and Forget Members - rare individuals with the grit and fortitude to do this job honorably, while growing personally. So, kudos to you!
When I asked this question, “If you could let someone know one thing that would help them better understand your life as a caregiver, what would it be?” my computer blew up with expletives that were so funny I almost piddled my pants, but I also received comments that caused a lump in my throat.
OUTSIDE LOOKING IN will be divided into three parts. Parts 1 & 2 are dedicated to the caregiver. Part 3 is dedicated to the family and the individual who has dementia.
That being said, let’s begin with . . .
What The Caregiver Would Like You To Know
*We would appreciate you educating yourself on a few basic facts about dementia. There is no shortage of information about this disease, and it has never been easier to obtain. The top two avenues are Google and YouTube, both of which can be accessed conveniently by your computer, Smartphone, or Smart TV.
Your local Alzheimer’s Association has oodles of brochures you can dash in and pick up. They also have a great staff who are more than willing to answer your questions.
I hear there is a terrific website, www.forgive-and-forget.com, that offers quick, easy to find material on caregiving topics and dementia – and – you are welcome to contact the Founder personally.
*If you cannot educate yourself minimally on dementia, and have no experience with caregiving, we have no interest in your feedback. This applies to those who give unsolicited advice on how we can “do a better job” taking care of our loved one, taking care of ourselves, or worse, challenge us on a decision we’ve made when you have spent little or no time with our loved one, and offered little or no help. No, seriously. Zip it.
*If you ask us, “How are you doing?” Listen to our answer. If the conversation continuously reverts to you, it is safe to assume we are holding back a strong desire to punch you in the nose. We are grieving our life, as we knew it, gone, and grieving our loved one, disappearing from how we knew them. Please filter your response and closely monitor whether our fists are clenching, or our eyes are glazing over. Listen to our answer to the question you asked.
*Do not undermine our care and management of our loved one. Don’t ever think you know better, especially if you live out of town or do not spend the same amount of time that we do each and every day with our loved one. Undermining will cause us to tap our holstered firearm with our fingers. Seriously, don’t push it.
*If you want to visit our loved one, ask us what to expect. The worst thing you can do is assume anything about this disease, so don’t. The second worst thing you can do is assume anything about this disease, so don’t. Everyone’s path with dementia is personal: no two are alike.
Ask us questions like, “What stage is your loved one in? What can I expect? Are they kind? Are they aggressive or rude?” or “How repetitive are they? Will they know me? Will they remember our visit? What do they remember?”
We will answer your questions honestly and as candidly as we can. Remember, this disease changes daily, sometimes hourly, so we can only answer your questions as best as we can at any given time.
Speaking from personal experience, I had a family member misjudge Mom’s decline with her Alzheimer’s. They had no clue where she was “at” with this disease because they were grossly out of touch. The result was they insulted Mom by trying to manipulate her, if not bold-faced lying to her – and Mom knew it. Her soul was hurt irreparably, which caused me to swiftly un-holster my firearm and shoot them in the foot. I figured I’d save them the trouble. Mom and I never heard from them again. Praise be and Hallelujah!
*It is not our responsibility to keep you informed about the condition of our loved one. Your relationship with them is your responsibility, not ours. And don’t take the low road and use us as your excuse to stay away, saying we are “too difficult and/or controlling.” That is as weak as it is transparent and insulting. Don’t be a Bozo.
That’s enough for now. See you at Part 2. Thank you, dear reader, for reading through to the end ~ Super-great job!