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Alzheimer’s, Family Secrets & the Right to Know

Aug31

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Advice Smackdown ArchivesDear 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.

Photo credit: Thinkstock

About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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8 Responses to “Alzheimer’s, Family Secrets & the Right to Know”

  1. hodgepodge Aug 31 at 12:43 pm Reply Reply

    To the OP – I am so sorry. My mom is a geriatric care nurse and Alzheimer’s is just so hard for everyone to deal with… you have my sympathy.

    I agree with Amy – your brothers must be told. The repercussions if they are not told very very soon will last a long time.

    My father in law had terminal cancer for many years – slow-moving but incurable non-Hodgkin’s lymphoma. He had a vast network of friends and colleagues across the country that he was in regular contact with – and as far as we were aware, they all knew about his condition. After all, he lived with us for five years because he was unable to live alone! After he died two years ago, I as the stay-at-home parent took Every. Single. Call from a parade of well-meaning and lovely people who either a) read his obituary and thought he’d died suddenly, and were shocked; or b) were just calling to chat and had no idea he’d died. I consoled more people long distance than I care to remember. And every time I had to tell the story again and respond to “we didn’t know! we could have helped!” it ripped the scab off my grief and made it all seem horribly new.

    Every one of those people wanted and deserved an apology because they felt they were important in his life, and he hadn’t trusted them with the truth.

    Please, tell your brothers. You will need their support in the months & years ahead. Best of luck to you and your family.

  2. Therese Aug 31 at 1:29 pm Reply Reply

    Oh my, my thoughts are with you and your family as you navigate this horrible situation. I lost my grandmother to Alzheimer’s 3 years ago and it was tough. Thankfully, our family was all “in the know” but I have to say that my grandfather still took a lot on himself. He died less than 1 year after my grandmother and we all acknowledge that he was partly run down from the years of taking care of my grandmother. He felt it was his responsibility as her husband to do everything for her and even told her “don’t worry, I won’t let anyone else take care of you.” It was such an expression of his love but in hindsight I wish he would have let us (or we should have insisted…) do more to help. I say all this to reiterate that your brothers really deserve to know what is going on. If nothing else, you need someone that you can talk to and process with. It’s not fair for you to shoulder the burden alone. Also, there will come a point that your father will need some assistance in caring for your mother. I’ll also point out that there is plenty of research that shows that Alzheimer’s can be hereditary. If for no other reason, your brothers need to know so that they can use that information to help themselves and their children in making wise health decisions… Good Luck and again, my thoughts are with you!

  3. EBH Aug 31 at 2:27 pm Reply Reply

    My grandmother died of Alzheimer’s. My grandfather died suddenly of a heart attack 2 weeks after the original, harsh diagnoses. She moved out to be close to her daughters and all us grandkids soon after his death.
    We were so grateful for the time we had with her: years of trips and walks and movies and dinners and sleep overs. But as things got harder, everyone had a role to play. The idea that your dad will be able to care for your mom alone is a complete denial of what this disease is. He won’t be able to do it alone, nor should he have to: the family will need to come together for your mom. Both of your parents will need support and assistance. They may very well need a professional caretaker eventually.

    The stigma of dementia is just like the stigma of all mental disease: it is wrong and should be ignored, because the only way to lift this hurtful stigma is to move past it. Hiding her condition is just giving in to the idea that there really is something to be ashamed of. Get this stuff out in the open, and then smack down those that would stigmatize your mother or anyone else with a mental illness. Besides, there is less and less stigma every year as more families are touched by this disease.

    You say your mother takes good care of her health. So did my grandmother. And yet this still happened. It is not her fault! Really. It seems your parents are in a strong denial: “I always took care of myself, so this shouldn’t be happening.” “If we just ignore it, it won’t exist.” They need your help to move past this. Otherwise, your dad will continue saying that everything is fine, until it’s way past fine approaching out of control, and then like others have said they won’t be able to hide it anymore and your brothers will be upset. And they will have a right to be upset. If everyone is in on the diagnoses starting now, people will have more time to adjust, more time with your mom, and a better game plan going forward.

    We laughed as much as possible. I’m not sure we could have got through those years otherwise. It’s time to face the bad news, and then move past it.

  4. Oh, Crap Aug 31 at 3:16 pm Reply Reply

    I just want to second Amalah’s words about telling your brothers asap.

    I live far away from my family, and they kept a few secrets from me for a while. Basically, I knew my parents weren’t doing well financially, but that was always the case. As my parents borrowed and stole over $20,000 from my brothers, I was kept completely in the dark. Meanwhile, I was still telling everyone about the scholarships I won, the trips I was going on, etc, because I thought life back home was continuing as usual.

    Amalah’s advice is good, give your dad time, then tell them yourselves if he refuses. Don’t put them in the position of looking like jerks for going about life as if they don’t know!

    Good luck, and take care of yourself. You’re in a really tough situation.

  5. Lesley Aug 31 at 5:17 pm Reply Reply

    My 62-year-old father is in the middle-to-advanced stages of vascular dementia and didn’t want us to know.  I am so glad my mom told us right away because otherwise his decline would have been all the more upsetting.  I never let on to him that I knew, but it made it somewhat easier to deal with seeing his decline when I at least knew why it was happening.  Nothing can make it easy, but at least it can be less confusing.

  6. Erica Sep 01 at 3:35 am Reply Reply

    My grandfather, who passed away about ten years ago, was diagnosed with Alzheimer’s when I was very young. Our family was always extremely open and honest about his diagnosis, for the sake of everyone involved – so that we all knew to take every moment with him during his remaining “good years” and so that every one of us, down to the youngest grandkids, understood what was happening as this crappy disease took its toll. My grandmother has had the great fortune to become closely involved with the Alzheimer’s Association, and even runs a number of support groups for both people with Alzheimer’s and their caretakers in her area. These groups include art therapy activities for more advanced sufferers, group sessions with both partners present, and time for just caretakers to talk about the stresses and hardships that come with fulfilling this responsibility to a loved one. I really recommend that D see if she and her family can get in touch with similar groups in her area, so they can learn from the journeys of others and find support and care in a community that understands where they are coming from. Secrecy around a disease like this only helps breed worry, fear, and anxiety. Better to be open and share your burdens with your loved ones, and give everyone the opportunity to support your mother during this time in her life.

  7. B Sep 01 at 1:50 pm Reply Reply

    I’m sorry you are going through this. We just did this with cancer where there were two whole people out of 8, who were honest about the terminal nature of the disease. Being one of them, and an in law sucked. However. After watching the ordeal I have to say my SIL rocked it. She was there, honest, but not the constant harpie of death either. And no one was mad at her either. I think she did a good job of letting people go through their grief and not arguing about reality vs. Denial. I hope you can do the same.

  8. Pat Sep 02 at 12:17 pm Reply Reply

    So very sorry, my mom was diagnosed 8 years ago and died two weeks ago. My father who cared for her so many years was diagnosed two years ago and died 18 months ago, so yea, it’s so heartbreaking. We are a family of five, my sister (who lives in Ellicott City 2 hours away), me (live one hour away) and my three brothers who live close where all in on both intial diagnosis. Sadly, my sister and I became the care givers, driving, driving. Both died in a nursing home as we were unable to care for them, my dad had to be drugged to even get him IN to a home. It was THE longest three years of our lives and so heartbreaking. My heart breaks for you because your journey has just begun and mine is finally over. They did not deserve to end their lives this way and their death gave us a feeling of peace but overwhelming sadness. I have no words of wisdom, just buckle up because this “ride” will test your siblings and yourself, not everyone steps up, just breathe and know that YOU are doing your very best to people who gave you life and love. Amy’s advise was spot on. Good luck to you honey.

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