Is my situation crazy? Need advice

saraho4

Hi everyone, I am very new to this group. Just joined 5 mins ago lol. I am 23 years old and I live with my father, 56, who was diagnosed with early onset Alzheimer’s. He was diagnosed through a PET scan after going through a year and a half of scans, tests, workups. This diagnosis was given to us April of this year, 2023. He has since been in a state of denial. He denies the PET scan, he believes the doctors purposely falsified his records and scans. He believes that he can be cured and “awaken” his brain again. His family, his sisters, brothers, and parents, feed into this delusion. They got him to quit taking his Aricept that the doctors prescribed, and have convinced him to take random supplements from a “with doctor” they found. They’ve overstepped so many boundaries with his health care. They won’t support me or my mom in getting power of attorney, getting his will in order, etc. they fully believe he can and will be cured by this witch doctor. For me, I tend to believe the science of stuff like this. I saw the pet scans, I saw all the testing done to lead us to the diagnosis. I see my dads cognitive decline. I see his trouble finding words. But still he’s in denial about everything. How can I make him understand or realize that this is his life? That this is a disease that he’ll live with for the rest of his life? Is it cruel to even approach him about this? There’s absolutely nothing wrong with having hope but to ignore science, and a years worth of testing that lead to this diagnosis is insane to me. If anyone has been in a similar situation, or not, I just need advice. I’m so lost. And I’m terrified. Losing my dad like this is terrifying.

Quilting brings calm

@saraho4 Concentrate on the legal items first. Approach it as all three of you need to fill out POA forms and get wills. Not that he does because there is something wrong with him. And that is true/ we lost our 31 year old son this year and he didn’t have a will or beneficiaries on all his accounts so it’s been harder than needed. Your mom can fill out a POA giving him authority ( as if nothings wrong) and have the lawyer immediately destroy it. She can name you instead if she wants

Your mom can start automating paying the bills from the checking account, have the bank statements come online, etc She can start putting things in her own name. Doesn’t hurt for her to go talk to an elder care lawyer on her own ( without telling him).

He may never come out of denial- and it may be because his brain is broken and he really can’t recognize something in wrong. It’s often best to just go with the flow’ ‘oh people often have memory issues as they age, or it’s stress, etc’. Just avoid the Alzheimer’s or dementia words for now.

Don’t worry about the Aricept. It helps a few, has too many side affects for a few, and many don’t see any benefit from it. It doesn’t cure anything and it doesn’t extend the life span or delay the progression. It just helps hide the symptoms for a while. At some point, you or Mom will start filling out pill reminder trays for him and you can put it in then.

I’m sorry your family has to deal with this- especially at your age. Welcome to the forum. Feel free to post on the main caregiver page about your dad- you are not limited to the parent forum. The caregiver forum gets much more activity. Feel free to respond to people posting on the spouse page. We all do.

M1

Hi Sarah, I am sorry you are dealing with this at such a young age. Look up the term anosognosia--it's a part of the disease and is much more than denial, he really can't perceive that there is anything wrong. It will help you understand.

That said, I am concerned that you appear to be the primary caregiver here, at a time when you should be building your own life. That is hard enough, if there weren't conflict in the family to deal with also. He is only going to get worse--and early onset tends to progress faster than later onset. While I understand and applaud your love and concern, it's not clear to me that you should take this on without a lot of thought and with the right supports in place.

He's lucky to have you in his corner.

John_O

Hi Sarah. Thank you for sharing here, especially given how frightening this must feel especially at such a young age. Earlier this month I lost my father at the age of 70 to Alzheimer's Disease. He was first diagnosed 9 years ago at the age of 61 (not too much older than your father), very much in the category of early-onset. At the time of my father's diagnosis I was 29 years old (presently 38). Shortly before my father was diagnosed, my mother passed away from heart failure which I believe worsened the early days of his disease given how depressed my father was. As his caregiver, I was not prepared in any shape or form to take on that role at a young age. I was just getting my career into its next gear and all of my focus was on completing business school and focusing on my life. But I learned very early on about balance and most importantly making the extra effort to take care of myself. It was a very tough experience over the last decade through and through, however I am comforted knowing he is at peace now and with my Mom again.

I say all this in order to share that you're not alone at such a young age. This forum has helped me a great deal over the past 2 years as his disease worsened. But, a few quick thoughts on your specific situation which may help:

1.) Definitely do what you can to convince your family that your mother (or you) should have Power of Attorney AND Health Care Proxy. This is critical at this stage because it will be much harder later on once he loses more faculties. As for the extended family, they should honor that no matter what happens with respect to his diagnosis, having these taken care of will only be beneficial for him as he ages.

2.) Get some second opinions. I think we went to 6-7 different neurologists for second (and third and fourth) opinions after my father's first diagnosis. These are very important so you can pull together a complete picture. Many doctors approach diagnoses in different ways, and this can only help your father and your family.

3.) Take care of yourself. It sounds like you are the primary person thinking through this, but if your Mom is as well, make sure that she is taking on some of the responsibility. You will burn yourself out very quickly and very young if you try and take all this on alone.

We are all here for you. Please stay in touch.

Warmly, John

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