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I AM NOT A LOVED ONE, and I'm not alone
I'd really like to see a change in the terminology. At 74 with a new diagnosis and dementia, without any family or friends left and still driving, I find it difficult to get information on how to manage on my own, make plans. But the hardest immediate barrier is that all the materials seem to be for caregivers and address patients as the loved one. I am not anyone's loved one and initially it's hurts to have to explain that to people, especially medical professionals.
I'd be interested in how others have addressed this. I don't have the energy to be educating people. I'm angry, sad, grieving at this devastating diagnosis. But these are not symptoms of dementia, these are human reactions to a horrible diagnosis.
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@merrychristmas do you have a form of dementia? Have they said you may have FTD?
According to Mayo Clinic, Frontotemporal dementia is an umbrella term for a group of brain diseases that mainly affect the frontal and temporal lobes of the brain.
Currently, I have a diagnosis of Mild Cognitive Impairment because I’m able to be totally independent. MCI is the first tiny step before a dementia diagnosis. It is not the result of dementia.
But, When the time comes, and I need help bathing, dressing etc I will be classified as having a form of dementia.
There are many forms of dementia depending on which part of the brain is not working correctly.
Some of them are, Alzheimer’s Dementia, Lewy-Body Dementia, Vascular Dementia, Frontotemporal Dementia.
Dementia is the result of brain damage. It affects many areas of a person’s life including behavior, and everything a person needs to do to survive like eat.
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3 ReactionsNo I don’t have dementia.
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1 ReactionI certainly can relate! I agree about the terminology! I do have a loved one, but I am her caregiver, as she is in heart failure! I, too, have been given a devastating neurodegenerative diagnosis, and my wife is too ill to be my caregiver! Wishing you the best!
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3 Reactions@foundryrat743 I am so sorry. My prayer for you and you wife is for a complete recovery.
It can happen. God has plans for each and every one of us.
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2 ReactionsAs a former lay minister and leader in my church, indeed, I trust the Lord’s plans for me and my wife’s future! We cope the best way we can, and pray each day, that the Lord will give us both the strength and ability, albeit some obstacles, to get through each challenge, that each day brings, going forward! God Bless!
FIND THE BEST DOC S YOU CAN FOR DIAGNOSIS !!! I WAS RECENTLY DIAGNOSED WITH DEMENTIA OR ALZHEIMERS???-MOST DOCTORS NOT EXPERTS IN THE FIELD, THE MAJORITY, ARE NOT NECESSARILY THAT KNOWLEDGEABLE. SOME ARE CLUELESS!!! A BRAIN SCAN FOR SOMETHING ELSE, AND FAMILY MEMBERS SAYING "YOU'RE REPEATING YOUSELF AGAIN," WERE MY SYMPTONS. YES, IT'S A SCARY DIAGNOSIS, AND I AM FRIGHTENED--A WIDOW, NO FAMILY NEAR. BUT BOTTOM-LINE -- AS WITH MOST DISEASES THE DEVELOPMENS ARE OFTEN DIFFERENT. I HAVE FAMILY WHO DIED OF CANCER, WHILE OTHERS WERE ARE STLL THROWING PARTIES. A COUSIN WAS OVER 106 WHEN SHE PASSED AWAY. BUT SADLY SHE HAD HAD TO BURY SOME OF HER CHILDREN. I NO LONGER DRIVE IN MY 80S --A GOOD IDEA REGARDLESS! A COUPLE OF FRIENDS FAITHLY GO TO THE DRUGSTORE TO FILL MY PRESCRIPTIONS, TAKE ME GROCERY SHOPPING WHEN THEY GO, OR I CAB IT! MY PASTOR VISITS ONCE I REACHED OUT. WHEN/IF YOU NEED TO REACH OUT, SOMEONE WILL RESPOND FROM COMPASSION, OTHERS BECAUSE THEY'VE WALKED THE WALK. THE FUTURE IS VERY SCARY BUT UNKNOWN--BUT CAN AND SHOULD BE PREPARED FOR IN ANY EVENT? THAT'S WHY WE HAVE AUTO, HEALTH, AND HOMEOWNERS INSURANCE HOW WILL MY/YOUR DISEASE PROGRESS? WILL I GO TO A NURSING HOME? OR REMAIN AT HOME? TIME WILL TELL. MEANWHILE, I'M WRITING A NOVEL, WATCHING JUDGE JUDY, HAVING A GLASS OF RED WINE, AND ORDERING SUPPER IN. TOMORROW? (WE'LL) I HAVE TO WAIT AND SEE!!! -WISHING YOU COMFORT! ENJOYMENT OF EACH DAY! AND THE ALMIGHTY'S BLESSINGS!!!
Thank you for the explaination. It's more than I've gotten from the Docs so far. Wishing you all the best!!!
Barbara