Where’s my help with my loved one with dementia? Just let me know how he’s (she’s) doing please???? Update you? You live just across town, why don’t you help? Do I have the right to be angry that I am getting no assistance? You can’t stop by because you have to work tomorrow? Well so do I!
Caregiver burnout is real!!! Last week at a lecture I was presenting, I was asked if I had any advice for those who work their tails off to take care of their loved ones, and are resentful about the lack of help they receive. I said “sure, but you might not like it.” I am candid to say the least, and unapologetic about it. First, I wanted to know why they were angry; what’s going on? Who’s not helping? Here’s some of what I heard from literally everyone in the room:
· Well, my son never comes to see his mom at the care community. He will ask about her but doesn’t want to go visit.
· My Mom’s grandkids are more than happy to live their lives now that they’re out of college, but they won’t visit the grandmother who paid for their education.
· I have a brother who lives 2 miles from mom and refuses to visit her, yet asks every time I talk to her for an update.
· I’m tired I can’t make it over during the week and I’m busy with the family on the weekend – was another excuse levied.
Well here’s my answers:
· Yes, we need to understand when people are afraid to see a family member in the late stages of Alzheimer’s or Frontal Temporal, mainly because they are afraid this could happen to them someday.
THAT’S WHERE MY SYMPATHY ENDS!
· The reasoning that we are all afraid to see a family member in the late stages of dementia applies to everyone. Don’t you think the primary caregiver feels that way too?
· You’re tired??? And they’re NOT?
· You work too (the primary caregiver) and nobody hears you complaining!
· The person with dementia isn’t contagious!
· There’s a sweet loving person still inside of the person with dementia and they still need love and attention.
· If you don’t visit, you are missing out on some precious journey’s this reality can take you on.
· There is still love, laughter and moments of joy to be found. Sorry you will be missing those.
· You don’t get a free pass. If you don’t want to come and visit and help, you don’t need updates.
· When they are gone the (primary caregiver) will have no regrets. Will you?
· That person with dementia was there for you during your life, now you are abandoning them and their caregiver. That’s the reality – Deal with it!
I am sad for and sympathetic to the caregiver who gives all and I am speaking for them now. Hear me now-
Those of you taking the easy way out, get over yourselves. Your family and friends need you and I am not giving you a free pass. Caregivers ask, they beg, they resign themselves to being alone on the long goodbye. They take care of their loved ones, they cry alone. They feel frustrated…ALONE. They visit…ALONE. They feel regret and guilt for decisions they have made ALONE. They get my empathy, my love, my friendship my guidance. To my fellow caregivers, I have your back.
You, the family member who won’t go & visit, enjoy your life. Do what you do. Your family will still love you and help you when you need it. That’s what they do. That’s what caregiver’s do. But I say, SHAME ON YOU! Don’t’ delude yourself, someone would love to tell you how much your lack of participation hurt and they resent it.
Maybe they can’t say it – so I said it for them.
Thank you Jill I’m going to post that on Facebook for my family
Thank You Terri,
You’re family should help and if not, I’m with you girl!
Amen, Thank you for speaking up for those of us who can’t or don’t. Now hopefully the people this applies really hear the message…
Thank You Penny! my Pleasure!
Jill, couldn’t have said it with more truth. It is a hard road to walk but our loved ones with the disease never asked to walk this road.. the road was put before them. Family and friends walking with them helps us all!
Thanks for sharing Denice! It is a hard road indeed and you are correct, when family helps it makes the heart happy! Hugs to all of you!