I AM NOT A LOVED ONE, and I'm not alone

Posted by jlam1950 @jlam1950, May 5 3:47pm

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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Have you contacted the DMV? The DMV should be the determiner of your ability to drive.

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@gkw1941

I feel your frustration. I was recently diagnosed with "Mild" Mental Impairment, and since then, all holy hell has descended on me! A former friend, mentor, counselor, lawyer, and religious educator) got mad at me because I independently bought a used car to increase my ability to contact people outside my apartment building. In anger, without any tangible evidence, his name is TC, and he is confused and unfit to be a friend. He reported me as "unfit to drive" to the Secretary of State's Department of Motor Vehicles. I am unable to obtain a copy of the report because, in Michigan, they protect the reporter's identity. I attended the Administrative Hearing and received a court order that suspended my license. I am a mere 83 (soon to be 84), and I am as Sharpe as I was when teaching at University. I still engage in Research. I continue to consult with educators in different geographical locations. I sold my car about a year ago (so I could get out of debt caused by two hurricanes), and now I am debt-free and have bought a car. TC told me I could not have a car, and then I found I have MCI driving restrictions, no "easy transportation," and no family (I like you) have outlived all my immediate family members. I have checked with a lawyer, but lawyers tend to be cautious about going against other lawyers (I think). I want to express my gratitude for sharing. This is my first stop on the information highway since grieving the suspension of my driving privilege. I was informed by the DMV administrator that I had no expectation of civil rights, and I am now exploring my options. (a) I hire a lawyer for $4500; (b) I can Seek help from the Mayo Clinic; (c) I can try to defend myself in Court; (d) Do research on my diagnosis and Get more information about the progression of the disease. (e) Move out of State??

I am so confused I need some suggestions. All are appreciated. By the way, I am a four-time cancer survivor. I am sitting here laughing. Because I can not remember what my user-name is. Just know I appreciate You and believe God will provide!

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A local Rehab Hospital May provide driving assessment for seniors. I know around Philadelphia it's available, and perhaps Mayo provides it as well. This with neuropsychological testing and a statement from your neurologist should back you up. If your personal appeal doesn't work then yes I would go to an elder care attorney. It's ridiculous. I have learned that the indicators for not driving: getting lost driving, accidents, near misses. I'm waiting until any of these show up to stop. Until then, it's my independence at stake, and I agree, if you aren't there you absolutely should not be forced.

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Thank you for sharing again. Almost two years ago, I got lost in Florida, trying to escape a hurricane. We were to evacuate. Other than that, I have never been lost. The administrator was not supposed to count that one because it was so long ago.
Additionally, my new car comes equipped with a GPS. This "friend" (TC), who is the reporter of my impairment, is also a friend of the Administrator (Judge). That is why it is a good idea to go to Mayo for an evaluation, as I believe Mayo offers something that Flint does not. I hate not being in control.
Blessing to all of us!

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Thanks again for pointing out I have had no indicators that I should not drive.

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@gkw1941

I feel your frustration. I was recently diagnosed with "Mild" Mental Impairment, and since then, all holy hell has descended on me! A former friend, mentor, counselor, lawyer, and religious educator) got mad at me because I independently bought a used car to increase my ability to contact people outside my apartment building. In anger, without any tangible evidence, his name is TC, and he is confused and unfit to be a friend. He reported me as "unfit to drive" to the Secretary of State's Department of Motor Vehicles. I am unable to obtain a copy of the report because, in Michigan, they protect the reporter's identity. I attended the Administrative Hearing and received a court order that suspended my license. I am a mere 83 (soon to be 84), and I am as Sharpe as I was when teaching at University. I still engage in Research. I continue to consult with educators in different geographical locations. I sold my car about a year ago (so I could get out of debt caused by two hurricanes), and now I am debt-free and have bought a car. TC told me I could not have a car, and then I found I have MCI driving restrictions, no "easy transportation," and no family (I like you) have outlived all my immediate family members. I have checked with a lawyer, but lawyers tend to be cautious about going against other lawyers (I think). I want to express my gratitude for sharing. This is my first stop on the information highway since grieving the suspension of my driving privilege. I was informed by the DMV administrator that I had no expectation of civil rights, and I am now exploring my options. (a) I hire a lawyer for $4500; (b) I can Seek help from the Mayo Clinic; (c) I can try to defend myself in Court; (d) Do research on my diagnosis and Get more information about the progression of the disease. (e) Move out of State??

I am so confused I need some suggestions. All are appreciated. By the way, I am a four-time cancer survivor. I am sitting here laughing. Because I can not remember what my user-name is. Just know I appreciate You and believe God will provide!

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@gkw1941 Frustrating. I know. I was diagnosed with MCI 3 years ago. My new neurologist (I fired the old one) thinks I have a different type of dementia called Frontotemporal Dementia. “Thinks” is the “word” I have to remember.
Turns out almost all neurologist cannot make a definitive diagnosis for all the different forms of dementia that exist.
My new attitude about this is, who cares. A diagnosis is meaningless. Not one form of dementia is curable, and they are all fatal. So does it really matter?

Laughter is the best medicine of course. I do not remember passwords so I have a small book to write them down. Sometimes, I can’t find the book!

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@babsjg1194

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!!!

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@babsjg1194 yes, me too. I live alone, and I have people who volunteer to drive me to my appointments, I get my food delivered, and the credit union handles my bills.

I’m anticipating moving into assisted-living in a year or so. It is so very expensive, but I don’t have family who can take care of me.
I will have to sell every single thing I own to afford it. Medicaid bleeds you dry and puts you into a facility that is subpar.
I have to figure out how to do all of this…

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@jlam1950 you need an ombudsman or a person who would become your conservator when you’re unable to do so for yourself. Since you’re still dealing with the shock I suggest you find a Geriatric Assessment Center near you. They can help steer you with therapy as your illness progresses. And it sounds like you need to see a therapist now to help you with these feelings. There are 5 stages of grieving and anger is one of those stages. Since you’re alone you should if possible arrange for your continued care in a memory care unit when you can no longer function independently. I’m sorry for your difficult diagnosis.

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@babsjg1194

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!!!

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Sugiero busques otras consultas.A mi suegro le diagnosticaron y medicaron por Alzheimer y tenía gliosis maligna.Lo supe tarde
Murió sin calmantes;asegúrate que tu diagnóstico sea confirmado por al menos dos profesionales
Fuerza!!!

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@julese

@jlam1950 you need an ombudsman or a person who would become your conservator when you’re unable to do so for yourself. Since you’re still dealing with the shock I suggest you find a Geriatric Assessment Center near you. They can help steer you with therapy as your illness progresses. And it sounds like you need to see a therapist now to help you with these feelings. There are 5 stages of grieving and anger is one of those stages. Since you’re alone you should if possible arrange for your continued care in a memory care unit when you can no longer function independently. I’m sorry for your difficult diagnosis.

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My post was about changing terminology.

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@foundryrat743

As 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!

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Thank you for the reminder-- "Once I was young by now I'm old, but I've never seen the righteous forsaken ,,," '"Lo, I'm with you always..."

Yes, we can and must hold on to the Lord's promises. More than once, alone, sad, fearful of the future due to my diagnosis, my phone rings and my Pastor is on the phone: "Hi, I'm in your neighborhood, and will stop in to bring you Holy Communion if you like," or a friend who is out of town calls between flights just say hi!

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