Early Onset

NLEnglish

Good day. I am only 51 and have dementia, second to my brain disorder, Arnold Chiari. This has been terror and is so very lonely. My husband of 10 years has decided that dementia is getting in the way of his future and career and has left, saying I was a detriment. Currently, I am going through a divorce while trying to juggle this dementia. I know others have faced this alone. Is anyone out there with dementia and alone?

Iris L.

Welcome to our online support group, NL. I'm sorry to learn of your two very serious diagnoses. I'm also sorry, but not surprised, that your husband didn't want to stick around. My own husband misunderstood my memory loss, believing me to be playing games on him. I divorced him. Later, he realized that I was dealing with an illness. Yesterday would have been our 29th anniversary.

Some people with Chiari malformation may improve with a shunt. Do you have a shunt? How will you be caring for yourself. Had you been able to work?

There is much information on this site and on the main alz.org site about what to do for ourselves. Please feel free to post questions.

Iris

Iris L.

I have a diagnosis of cognitive impairment not otherwise specified, and I am caring for myself.

Iris

klucey

I am divorced and solo with family far away. I’m awaiting another neuro consult this month, but have been struggling with brain problems and depression for a few years. What’s working for me is connecting to other people. An online grief group (I’ve lost family members). I do online therapy. I started to attend church, volunteering at the library, reaching out more to friends. I also don’t have a car so have asked a few friends for help along with one person I pay. I find that when you’re single you have to make more of an effort to connect than the other way around. This used to bother me but now it’s gotten easier. The upshot is that when I share my struggles people want to help.

klucey

NLEnglish

I also want to say what your ex has done is terrible, and I’m so sorry you are going through all of this. Be kind to yourself

leilani

I hope the courts make your ex-husband pay through the nose.

Amy Joy

Hi nl English

Im sorry to hear about your diagnosis. I hope you getting better.

Does dementia runs in your family?

Its hard to believe you are so young!

I have dementia from my late forties and was in the family.

Indianagal

I am currently living with early dementia. It is hard to let go of those things that were once intuitively easy. I'm finding the thought processes for grocery list and menu making ornerous. I'm going to try delegating some of that to the spouse, but afraid it will just be Campbell's Soup out of the can kinda stuff...we'll see. I find it hard to track day, date, month and season and have to recalibrate several times daily.

I think it is helpful to actively acknowledge and grieve what was once a "piece of cake" is now not possible. This past Christmas I had to let go of most of the menu planning and meal execution for my large, gathered family. I used lots of Amazon shopping for family gifting. Even then, I found mistakes where I had ordered more than one gift for someone. I'm gonna start now and make a spreadsheet to track for next year, picking off the task in bits for my large family. I get great pleasure from doing international folk dancing. The same dances are repeated every week so that makes it very doable. My spouse and I also walk the nature preserves and city parks regularly. It is harder to get up and go during the gray months, but it does absolutely helps lift the mood.

May God bless us all in this tortuous journey.

Anna

Iris L.

Welcome Anna. You seem to have a busy life, and you are automatically making accommodations. Please keep posting your tips.

Iris

Mimi50

My husband was diagnosed year ago. We have been married 25 years. Your husband is slime ball who doesn't deserve you. The words in sickness and in health were empty words. To go along with the empty suit he is.

Janutt

Hi NLEnglish,

I am so sorry to hear the struggles that you have been going through. It must be so exhausting. I had my fair of struggles with my DH because he too had cancer diagnosis a few months before i was diagnosed with EOA. His family was not nice to me. No help from them except lots of critiscim. I also got grief from him as well. I have told him he has a choice if he wants to leave me , but he stays through my ordeals. It’s a shame how one suppose can be very supportive among the midst of the crazy thing called life and you can be there for them thick and thin, but when the shoe is on the other foot it’s a whole new story. I hope you find comfort and support from many people who love and support you. Hugs

listb212

https://alzconnected.org/discussion/67206/early-onset

I am so sorry to hear this. That must be so hurtful! I am praying for you.