One of the biggest problems we face in the Alzheimer's and dementia care communities is the abandonment of both the caregiver and the person living with dementia by family, relatives and friends.
This causes a great deal of psychological and emotional pain for both the caregiver and the person living with dementia.
It is not unusual for caregiver to tell me that as time goes on, and as Alzheimer's worsens, one by one their family and friends fade away.
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One issue that really frustrates me is the treatment of Alzheimer's caregivers.
Most Alzheimer's caregivers hear people tell them how wonderful they are for taking care of their loved one.
As a caregiver, I learned to appreciate these compliments. They help, they really do.
However, if you have a loved one, family member, or friend that is an Alzheimer's caregiver and all you do is tell them what a great job they are doing -- it is not enough.
Many Alzheimer's caregivers are forgotten by family and friends. This is a sad truth that is rarely discussed.
This is understandable -- Alzheimer's is scary and disconcerting. It is hard to accept, hard to understand, and hard to watch as it progresses.The odd part in this dynamic is that is not unusual for people to say - I don't know how you do it, or you are doing a great job. Then they do nothing. Wouldn't it be true that if it so difficult to do - you need some help? Why don't they offer to help, or help?
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Pamela Kelly wrote in response to this question - ... they refuse to help. I want a stat on the deadbeats so they can see themselves officially identified. Right now they are invisible".
"If everyone who identified themselves as a primary caregiver also indicated how many siblings they have who do not help … well, my conservative estimate is 15 million!!!"In
Unless you are an Alzheimer's caregiver it is almost impossible to either understand or comprehend what it is like living in the front row.
Unless you are one of us, you have no clue. It really is as simple as that - you have no clue.We the caregivers and the persons living with dementia are no different than anyone else. We need company, we need help, we need socialization and when we are avoided or abandoned we feel lonely.
Lonliness leads to sadness and unhappiness. We are already sad given the circumstances in which we live each day. But this sadness worsens when everyone starts to forget about us. Not only are we sad and lonely, we suffer sometimes from what I call deep sadness. Deep sadness is a form of depression.
Wouldn't you like to shout,
Why are you abandoning me? I am already sad and you are making it worse.
No one has said it better than dementia patient Alan “Beam” Beamer. He is lonely, he feels abandoned, and all he wants is for his friends to come visit him and treat him like a real person.
Watch his impassioned plea and video here - Alzheimer's Patients makes a tearful video asking friends to come and visit.
You might want to copy and paste the URL from this article into an email and send it to family, relatives and friends.
Why not? You can't make the situation worse, and who knows, maybe someone will listen.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.
The Alzheimer's Reading Room contains more than 5,000 articles and has been published daily since July, 2009.
Comments from the Alzheimer's Reading Room on Facebook
You definitely find out who your real family is with this disease. Going on 2 years in the final stages of vascular dementia now, I can count on one hand who is still around for my grandmother.. it's sad really.
My sweet daddy had this horrible disease & passed away in November. I miss him dearly. I just don't understand how my brother & his wife didn't make time to help in any way, during the past 3 years of difficult times. There is no excuse when parents do so much for their children!
Elaine Jeffries Turley
Absolutely! It's like we have ceased to exist for some. They don't know what to say or feel uncomfortable being around. It is sad.
Great article !!!! So true.
Cathi Claiborne Peters
My dad says to me in rare lucid moments, why don't they come and see me, I helped them learn to tie their shoes, I held their hands.....I have no answer...I change the subject, when I leave i go down to the end of the street, stop my car,and cry...I cry by myself a lot....
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Pam Garrett Campanaro
So true. A long time ago I️ read an article if u want to really be helpful, do something. Don’t just say “well if u need something let me know.” missed a neighborhood annual Christmas/cookie exchange party that I️ so wanted to attend just to have some normal conversation and me time because Mom was having a bad day. The nicest thing happened, the party hosts came over later and brought my family some cookies and just came over and visited. My mom sat there the entire time but I️ still felt like I had some human interaction. And spot on about the comments “what a wonderful thing you are doing....” makes me want to scream.
It is difficult to confront Death and Disease so blatantly and over and over and over again, every minute of the day. It takes tremendous effort and Spiritual Will to be a GOOD caregiver. It is easier for most to ignore the situation and bury the feelings. It is an opportunity to grow and be filled with Love.
Mary Pat Hughey Lambert
I get angry when I hear someone say "I just can't stand to see her like that" or "I can't stand to see her in that facility (memory care)." How do they think I feel? Do they think I'm immune to what I see every day or that I don't feel at all? That's when I want to scream!
Jody Clayton Carpenter
My husband and I have been on this journey for almost 9 years ... 2 years ago I sold our home of 22 years and put him in a Veterans Home an hour away . I moved into an apartment close by so that I could be there to let them help me to take care of him. The Veterans Home idea of dealing with this is putting all the Alzheimer/dementia guys in a "secured" unit with untrained workers. When I say untrained I mean they don't have a clue how to deal with these guys ... Hollering .. Pulling .. Arguing & antagonizing them will not get good results ... Thankfully I got my husband moved off this unit after 9 months because he is no longer mobile at all .. I'm just thankful that I am close by ? Is it taking a toll on me .. Yes but I will make it through this journey with him ... We've been married almost 48 years !
Carol Trant Dean
I have had 4 family members die of Alzheimer’s or complications associated with it in the past few years. It is a lonely journey indeed, but 1-please TAKE CARE of yourself. You know how to take care of your loved one, so please extend that same loving kindness to yourself, 2-TELL others what they can do to help you, and when they start criticizing or diminishing you or your loved one, it’s okay to take a Giant step away from them. It’s called self-preservation/survival. Meanwhile, and most importantly, pray without ceasing for your loved one and yourself. You’re NOT being selfish. And remember, there are people who CARE. SEEK them out!
Patricia C Vener
I found myself longing for someone to think of me (and my mother). I found myself resenting family that did things together not only without including me (or my mother) but not even including me in the conversation. I never resented my mother or my caring for her, though. Is that surprising? I don't think so. I was resilient and I learned after a while to understand that my siblings were perhaps not as resilient as I am.
Lisa Belknap Pedrick
Exactly what we are going through, all her friends will not even go visit her, then get mad at us because we don’t do the things they think we should be doing with her.
Leslie Viney Kost
My mom had alzheimers..we were both abandoned by my only sibling, my sister
Susan Fessler George
This is so true. You find out who is really there for you
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