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chrissy1981 · April 27

Hello,

I am 43 and just been told I have either frontal temporal dementia or early Alzheimer’s. They leaning towards Alzheimer’s. How do I deal with this? The last 5 years I have had 2 open heart surgeries and stent and now this. Like this is a death sentence to me and my kids are going to have to deal with it and I hate that for them :(. I don’t even know how to tell them or if they will even understand the impact. Sorry I’m very overwhelmed with this. It was never a thought I have this issue.

Iris L. · April 28

Welcome to our online support group, Christy. Please feel free to ask questions, we will try to help you. Cardiovascular disease impacts brain health and can diminish memory and other aspects of cognition. When you were under anesthesia, were you deprived of oxygen? Have you had a stroke, or mini-strokes? Were you evaluated by a neurologist who regularly diagnoses patients with dementia? There are many dementia mimics. Please familiarize yourself with the process for diagnosis. The doctors must rule out treatable dementia mimics. At your age, I would be reluctant to accept a dementia diagnosis without a thorough medical and neurological evaluation.

In the meantime, stay strong! How old are your children? What treatments are you doing? Are you working at a job? Please keep us updated.

Iris

chrissy1981 · April 28

https://alzconnected.org/discussion/comment/207369#Comment_207369

they have done a lot of testing. They are thinking more along the lines early onset Alzheimer’s as the amyloid blood test came back positive. They are looking to get the MRI pet scan.

After reading reports from my surgeries there ain’t any mention of lack of oxygen during or after surgeries. I did have a stroke confirmed by on MRI which is why we also did the neruropysch testing which showed the MCI.

My kids are all young adults 19-24. I have 4 kids. I also have 1 grandbaby and another on the way. I do work but figure after diagnosis I’m gunna quit to live what life I have left with my family. They do have my on donziple (spelling is wrong sorry). I will be looking at clinical trials in my area too.

concerned_sister · April 28

Chrissy, sorry you're dealing with all this, on top of everything you've already been through. My brother reports the generic Aricept (my way of avoiding that spelling word) has been helping him. He's been on it about three weeks now. How's your experience been?

Iris L. · April 29

Chrissy, before you leave your job, please read my thread "If You are Working". You don't want to lose benefits unnecessarily.

Try to work on your cardiovascular factors, such as blood pressure and elevated cholesterol levels.

Have you noticed any change with donepezil? I noticed change within a few days after I began Exelon patch, which is similar to donepezil.

Iris

chrissy1981 · April 29

https://alzconnected.org/discussion/comment/207523#Comment_207523

I did. It made things seem not so foggy. I felt my memory did improve.

The only benefits I have from work is my life insurance policy. I have no PTO time left and only long term disability which takes 6 months to start. I can’t wait that long for income.

Iris L. · April 30

By personal time off do you mean sick leave? Will you be applying for Social Security Disability Insurance benefits? You should be eligible for Compassionate Allowance.

Iris

chrissy1981 · April 30

https://alzconnected.org/discussion/comment/207632#Comment_207632

yes I have no sick leave. I have long term through work but it take 6 months for that to kick in. Ayes I plan to apply once they make it a “final diagnosis “.

eaglemom · May 2

I am glad that you've found our message board. It is scary and devastating having any type of diagnosis. You will not be alone, we are all here to help you along this journey.

As for telling your adult children, it might be better to tell them sooner rather than later, IMO. Just to keep them in the know about what is happening with you. Now, how they react is totally up in the air. They'll need time to 'adjust' to your diagnosis for sure. After that is when you'll see how they are going to step up and help later on when you need it. (Later on down the road.) Do not be surprised if they go quiet while they process this. That's perfectly fine.

Your Long Term Disability that will kick in at 6 months - do you know what all is involved with receiving that? I will say that usually its a long process. I don't say that to scare or upset you, but rather so your informed. I know when my DH was diagnosed and we tried for the LTD they had he (us) jumping threw hoops to get approval. We stuck with it, but it was a battle. I hope you don't have that battle.

We want to help. Share what you want and let us support you.

eagle

klucey · June 8

I agree you should tell your kids sooner than later. They will adjust. I’m in the same boat. And get depressed at how this will impact their lives, I can’t speak to LT insurance - I don’t have it unfortunately. I would contact an elder care atty to see if they can point you to a financial planner to lay out a plan. Also check out Still Me by Rebecca Chopp about living with Alzheimer’s, slowing progression and coping with fears. Try not to panic - just tackle one issue at a time.

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