Alzheimer’s, Family Secrets & the Right to Know

Dear Amy,

I’m a long time reader and fan, thanks for the continuous laughs (and a few tears). Your readers, including myself, feel like we have an extra friend to turn to in good times and bad!

I’m looking for some advice on dealing with an ailing parent. If this topic is too sore, just file it away.

My mother (aged 76) was recently diagnosed with Alzheimer’s Disease. Her lack of clarity and dwindling short-term memory became apparent to me 2 years ago, but the official diagnoses came just months ago from her primary physician (along with more severe changes in her behavior). Hearing the diagnosis was not a total surprise, but it was still a very heartbreaking conversation to have with my father (only the second time I’ve ever seen him cry). He is a devoted and loving spouse, and I know without a doubt that he will care for her through even the worst of times. I do not live in the same town as them, but I am committed to helping them weather this in whatever ways I can. I also have a loving husband and three young kids that adore my mom and dad.

I have two brothers with families of their own and neither of them know about the diagnosis. My parents have always shielded us from their health issues (nothing very serious up to this point, but they’ve had their fair share of aging issues/accidents). The only reason I know about the Alzheimer’s is because I approached my dad about my concerns 1 year ago, then 6 months ago, then last month. My mom is a loving person…but is also a stickler, hates doctors, medicine, admitting fault. She has always prided herself on her physical health (strict diets, daily walks, etc), which was why I went to my father first. The conversations with him have been quick and secretive. They are always together! In other words, I have not spoken about this to my mom at all…and this is at the request of my dad.

My current issue is how to handle the rest of the family. One brother lives several hours away from my parents, is involved with the family, but has not really picked up on my mom’s change. The other brother lives closer, but has a very strained relationship with them.

I think my dad wants to keep the information very close and under wraps because there is such a stigma attached to dementia. Like any terminal illness, it brings a deep sense of loss. It steals time, memories, independence and so much more even when the person is otherwise very healthy.

But don’t my brothers have a right to know? Should I push him to tell them? Should I tell them anyways? Give him more time? I KNOW that my dad is going through a lot of adjustments and is learning how to best navigate things. But, there is no way to know how quickly she will get worse. And she will get worse, it’s a train that will not stop. Additionally, couldn’t my dad use some extra help and support?

I’ve already had a few too many cries over it, and am now just trying to deal. And some days she is so THERE. SO present. No repeating the same thing for the 100th time. And then the next convo…not so much. But, life does continue on. Potty training, and almost crawling babies, and OMG-was-that-an-earthquake keeps us all keeping on!

Thanks for your insight,
D

First of all, I am so sorry. Alzheimer’s is so particularly cruel, since it brings loss after loss after loss, and I am so sorry that your family is facing this road.

Second of all, I very keenly feel and empathize with what your father is going through, and why he is making these somewhat-questionable calls right now, because being a caretaker is a really, really rough job. Even when you love the person unquestionably and understand that this is part of what you signed up for via your marriage vows, it’s rough. Your whole world shrinks down to this ONE PERSON…who is going to most likely, leave you behind, either physically or mentally.

That said, your brothers NEED. TO. KNOW. Like, yesterday. It’s fine if your father wants to hold off on telling friends and extended family for now, but withholding this information from your brothers — your mother’s sons — is bad, bad news. This is the sort of thing that can send a “strained relationship” into full-on estrangement. Your brothers need to know that they may have limited time with their mother — and their children with their grandmother. You know this.  Alzheimer’s steals so much from families. By hiding the news, your brothers may feel that your father (and YOU, if they figure out that you knew too) essentially “stole” even more from them: their last chances to interact with their mother in a meaningful way.

(Of course, your brothers might not automatically rush down for visits and make their relationship with Mom and Grandma a priority, and that can be disheartening. We have some of that in our family too. But whatever their reaction is, I think you’ll feel better if you know that you at least gave them the truth. What they do with it is their business.)

Personally, I found navigating my relationship with my mom during my father’s illness tougher than anything else. Still do, honestly, months and months later as we all cope with grief in our own ways and timetables. I never knew when I was helping or overstepping…or when I just NEEDED to overstep and overrule and be the harsh voice of reason.

I can’t tell you how many times blog readers sent in offers of help and resources: everything from hard-to-get appointments with cancer specialists to numbers for social and support services that my mom REALLY REALLY NEEDED, and even just kind, not-crazy local people wanting to drop off food for them. I passed each and every offer and bit of information on and then…watched my mom do absolutely nothing with any of it. I never quite knew what the right answer was. On the one hand, she was a perfectly healthy, capable adult with the right to manage things how she wanted…but she was also already grieving and anxious and terrified, so maybe I should call those numbers myself and force them both into accepting help or a second opinion?

Personally, I didn’t. I tried to offer advice when it was asked for, tried to be there as much as I could (hard with two small kids and a pregnancy to deal with), tried to get to know my dad’s doctors and make my opinions known but not intrusive. I cannot say that this was always enough. There are still plenty of things that I second-guess to this day.

However, in your situation, I really have a very strong visceral reaction to the idea of hiding the news from your brothers. I think this is absolutely a time to step in, firmly and gently and tell your father that while you understand his instinct to “protect” your mother from stigma (though I think this is mostly coming from a place of denial), your brothers are a glaring, obvious exception and they need to know that the clock is ticking, so to speak. I’m not a fan of ultimatums, but could you offer to tell your brothers for him? And if he says no, he wants to tell them…go ahead and set a date and say that if he doesn’t tell them by then, you’re making the calls?

It’s just not fair to anyone here: Your mom should see her sons and grandkids while she still recognizes them and isn’t struggling and frustrated, your brothers and nieces and nephews deserve the option of making some happy memories right now, and it’s SUPER not fair for YOU to to be made an unwilling keeper of a big family secret. (A secret that, if they find out that you kept from them, could also negatively impact your future relationship. And man, do I super-extra-value my relationships with my siblings now that we’ve lost one major connecting anchor.)

I do think your dad is mostly stuck in the denial phase of grief — and make no mistake, it really is like you grieve one time while the person is ailing, then find yourself whacked back to square one when they actually pass on. If he keeps it secret from everybody, it’s like it’s not really happening yet. Hopefully, he will move past this phase on his own, in his own time. I would give him more time before you start pushing for more, beyond telling your brothers, but it is something to be aware of in the months ahead. Someone might need to make sure he’s not misjudging your mom’s current state and his ability to cope and care for her. Spend some time researching resources for Alzheimer’s patients and their caregivers, and maybe try to arrange a visit that would allow you to accompany them to a doctor’s visit so you can get a clear picture on where your mom is with the disease and what help your parents are eligible for. (Help that your dad might have a hard time accepting, unless it’s framed properly as in your mom’s ultimate best interest.)

Again, I am so sorry you and your family are facing this. I hope I’m not making it sound even more overwhelming, by suggesting that you become the caretaker of your mom’s caretaker. There is definitely that aspect of it, when a parent is ailing and the other is almost “too close” to the situation to process everything correctly. But take care of yourself too, and your family, because hey, you deserve to grieve and deal with things the way YOU need to, too. Hugs.

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