New to younger onset group

Dino305

Hi 👋 I’m new here. I posted earlier, and here is a follow up question. I’m a 58 year old school counselor just dx with MCI. For those in the same situation, who did you and not tell the news to?

Dino305

To clarify, who did you share your diagnosis with.

Iris L.

Are you thinking about sharing your diagnosis? Why? You are at risk of being fired, regardless of any disability anti-discrimination laws. The employer will find a cause to fire you if your diagnosis becomes known.

Iris

klucey

I’m not working anymore; I’ve told my kids because it became too onerous to hide it. I’ve also mentioned it to friends. It helps not to have to keep it a secret. Some don’t really acknowledge. Perhaps denial and stigma. I agree you should not disclose in the workplace, although I’ve heard some work places will work with you to give you accomodations

jglehman

Who we told shortly after diagnosis: It was too hard to tell a few close friends in person, so my husband and I wrote a short explanation of 1) my diagnosis from Cleveland Clinic and a medical explanation of what it is and how it will evolve, 2) how life is changing for me, and 3) how they could be helpful because they are special people in our lives we hope will continue to support us on this journey. This was a catharsis for us, but the people we gave it too really thanked us and cried with us. We gave it to: family, my daughters soon to be in-laws, closest friends, neighbors who have and will continue to witness behaviours (I am having seizures as well).

Work: I was able to work for the last five years with MCI (not understanding that was what I had). My employer began to notice the difference, and did provide accommodations. When it became too apparent (I was in an executive leadership role) I took short-term disability, which evolved into long-term disability through Unum. Unum without justified explanation abruptly cut the long-term, which ironically is right before I go back to Cleveland Clinic for suspected diagnosis of Younger Onset Alzheimer's and epilepsy. So I think the caution about work is worth giving pause, but I also think it is completely unethical and wrong. My employer is fighting Unum (it was a disability plan we paid into).

Fresh Start

Dino. I was Dx at 62 I worked over 40 years in my profession and I am also a singer. I told my choir and some family members, not my job . I retired before I was fired. I find as I tell people they don't understand my struggles especially being younger, but I know how I feel and learning my limitations daily and learning to not have regrets. Pray your strength in this journey!

Amy Joy

Hi I was in my forties when I found out I had dementia. I feared Too might loss my mind to dementia. I’m struggling with my memory and other health problems. I wish to stay with my family as long as I can.

KnM4ever

My husband is about to turn 58 in a couple weeks and we just found out he may have EOD, I am 9 years younger than him. His mom passed away in February 2022 from Dementia. He is going to do a clinical trial where he will have MRI and PET scans and a spinal tap. If anything, maybe he can be contributing to help find a cure down the road. We both work full time, together! I don’t know if I would have known he was having cognitive issues, had we not worked together for the last year, kinda a blessing in disguise. I don’t know who to talk to or what to do first. Do I try and get long term care insurance, or is it already too late? We are not made of money and if he does have to get care in the future I don’t want it to drain everything we have and then I lose my future. I know that sounds selfish, but I know how it goes since my MIL was in AL for at least 10 years and was about to go on the state when she passed, and had to be down to I think $2500 in the bank before that could happen! Who and when should I get someone involved in setting up what needs to be done? I hope this makes sense, I don’t have a clue about what to do.

Iris L.

Welcome KnM4ever. Yes, it is too late for long term care insurance. I hope medical dementia mimics have been ruled out by blood tests. If you visit and post on the Spouse/Partner board, there is much guidance the members can give you. This board is usually visited by people with dementia. What type of work does your DH do? Is he an employee? Does his employment offer disability insurance? Has he had a poor annual employee review? When you repost, please add more background information so you can get good responses.

Iris

webdeb

https://alzconnected.org/discussion/65678/new-to-younger-onset-group

I tell most people at the beginning - I explain I might not recognize them the next time I see them and I will never remember their name. Most people are very kind and do identify themselves when I see them again (I don’t do this for close friends as I remember their names). Also, I am having trouble talking and I just say “sorry” when I mess up my words and explain my disease to the people I am talking to - I don’t want them to think I am DRUNK!. Most people are very kind, but there are a few people who are so afraid of the disease that they can’t cope with it. In short, I am very open about my disease and 99% of people are great with the information.

Amy Joy

Hi welcome sorry to hear about your your diagnosis

Its not easy to find out you have dementia.

I found out in my late forties.

I take new medicine and now stay with family.

I’m struggling with my memory and having health problems.

I now need help with daily things but I can still living in my home

Janutt

Hi Dino305,

When I was diagnosed I was 55years old. (I will be 58 on Wednesday).I had suffered a rare heart attack caused by (SCAD) at that time this is where my memory quickly declined, speech, and my walking became erratic. I remember going home with my daughter but, I couldn't figure out how to drive. I have lost my license since then. I have also had a brain aneurysm and 2 strokes. When this all happened my DH was diagnosed with Mesothelioma (lung cancer) a few months before. When we explained this to his family that and my cousins and other relatives they all said I was lying. So, my communication had dropped to zero. No-one would speak to me. I was alone. My husband was also skeptical as well. He would say to them and to the doctors that I took "his thunder away." This did infuriate me. My children have been my supporters. My DH has come around. I do not work, so I receive no income or any type of assistance. My husband does. I have joined my local gym and everyone there has been so supportive of me. I can laugh and be myself and not worry. They all know my health history now and they have been more supportive than my in-laws and relatives. I do not care if I don't remember them i'm sorry to be harsh. I wish them well.

When I did work, my coworkers were very clicky. So, if something happened I would get grief and they would try to not let me move up in position. I was a good employee. So, for me I would be cautious. They say they have your back, but again as I have witnessed with my own children work you can be replaced.

Best to you 💜

Amy Joy

Hi everyone how’s your day going?

How are things after being diagnosed?

Does anyone have other health problems?

I now was diagnosed with dementia and people I worked with thought I had dementia years before I was diagnosed.

Janutt

Hello,

I’m doing well. Thank you. I just celebrated my 58th birthday with going to have a Echo for my heart.

I am feeling better now if this makes sense. When I was diagnosed with EOA I had suffered a rare heart attack(SCAD) which made me forget memory issues, brain aneurysm, 2 strokes, and now a spleen aneurysm. I have not really thought too much about it but when I did speak to the Alzheimer’s Association consultation the other day. I had asked her if this was terminal and explained how it’s a progressive disease. That’s when it hit me. I wanted to cry, but the sadness went away very quickly. I just made her laugh with funny stories.

I remember when I was working in 2017 that I couldn’t remember words so I would say “new words new mouth” to my employees. They would always laugh.

how are you coping and how are you today?

smellycat

https://alzconnected.org/discussion/65678/new-to-younger-onset-group

Hello, my husband was diagnosed this year at 58. He has vascular Dimentia. He turned 59 this year after diagnosis. He did not want to tell his children but i had already told them because when I read how long some people live I wanted them to see him more and know how long they might have with him.

Janutt

Hi Smellycat,

I'm sorry to hear about your husband. I would imagine it had to be hard for you to let your children know about your husband’s diagnosis. I hope you’re doing well.

Questonian

https://alzconnected.org/discussion/65678/new-to-younger-onset-group

Hi, I'm 57 and was diagnosed with EOA in August this year, my wife and daughter were with me when i was officially diagnosed so that all were on the same page as me and were aware. I told my mum and dad and that was it for a little while. recently told a couple of very close friends.

I retired from work this time last year so thankfully i don't have to worry about work, I'm a carer for my wife (which is another story), she is my rock, my sounding board and I am very grateful for all of her love and support.

Amy Joy

hi janutt!

How are you?

How was your heart test?

I had the same test.

I have a EF if 45%.

Sorry to hear of your troubles.

I hope things get better 😄

Janutt

Hi Amy Joy,

I am doing well. I started physical therapy recently because of my falls.

my heart test went well I was told that I had many dissections in my heart and will always be at risk of having another heart attack/SCAD.

thank you. I try not to think too much about it because it can be very depressing