Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s

A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.

Date My Dad or Bless the Caregiver…

I’ve been on this road since I was 28 or so. I think. I’m 34 now. I can’t really imagine my life without this disease. Even though my mother is the one who’s sick, her dementia affects me too. Although I’m at a point now where I don’t miss what could have been (rather, it doesn’t haunt me like it used to)—I don’t fantasize about having girly-talk-filled-lunches with my mom or meeting up for pedicures anymore—these days, I worry a lot about my dad.

My dad is a full-time caregiver. He retired at 63 to take on this not-so-jazzy-job………………. he couldn’t take the stress of not know what would happen when he we went to work each day. These days, he spends his days tending to his toddler-wife. He bathes her, he feeds her, he makes sure she doesn’t drink the soap (or any other kind of liquid cleaner), he takes her for walks, he takes her to the doctor, he does her laundry and he cleans up after her………………………………………… he does whatever she needs.

He rarely complains.

Sure, he has his moments…………….. I can tell when he’s sad or angry and it breaks my heart. I can only do so much for him. But I can’t help but wish he had some companionship. Sorry, a demented mother who uses a handful of repetitive phrases to communicate does not count. Somedays, I wish my dad could meet someone nice and pretty too………………………….. because, I think someone nice and pretty would be lovely. Maybe. I hope. Someone who understands and supports his situation.

My mom is at a point now where she cannot play wife.

My dad has no one to talk to. I’m his only friend I think—but I’m also his daughter.

Mainstream dementia or what you see on TV isn’t what you see in real life.

I hate news stories about Alzheimer’s or dementia. They often feel sugar-coated. You hear the afflicted man or woman—still incredibly lucid—talking about how they are savoring every remaining moment, every precious memory. Then, they look into their partner’s eyes—they both fight back the tears.

It’s tragic, but that’s not always the reality.

My mother and father never held hands as they looked lovingly into each other’s eyes when as the doctor informed them that she had Alzheimer’s in 2006 (a misdiagnosis as it turns out…………………).

In fact, my mother never seemed to comprehend that she had any kind of brain disorder. She just drifted away year after year—her essence lost in the fog.

The years leading up to the present moment were filled with every emotion……………………… denial, anger, sadness, rage, frustration, anger, anger, resentment, jealousy, despair, desperation, hate, contempt, denial……………………..

There was no tender hand-holding.

The grotesque reality is avoided: the behaviors, the emotional toll on family, the loneliness……………………. the deep, dark pit that often traps caregivers like my dad.

So here’s the question????????????????????????????? Is it really fair for my dad to go on without a new partner because his wife is still alive? And when is it OK for the caregiver to let go of the past and live?

Caring for a demented loved one is a prison sentence. You are bound to your loved on because it is the right thing to do…………………….as humans, we must care for our family. We must love them and respect them. We must do what we can do to make their life as comfortable as possible……………………….. and as a society, we demand it. You are noble if you remain ever faithful to your demented mate. You’re loyal. You’re remarkable. You’re heroic. Society smiles upon you. We give you our seal of approval because you are doing what no one really wants to do………………………………………………

But what if your loved one’s mind—that part of our grey matter that makes us who we are, gives us our personality, our energy, our vibrancy, that “thing” that makes you you—has already crossed over?

Can you be a caregiver, a good caregiver and date?

I want my dad to date. There, I said it. I want my dad to be happy. I want him to meet someone who treats my mother with love and respect. I want someone who understands that this is not a conventional or convenient relationship. Yes, my dad comes with baggage, a demented and dying wife and a 34-year-old, but doesn’t he deserve some kind of a happy ending too?

>>Flickr pic by Funky 64

Rock the Vote…. Interview with Sue Henley

I’ve never met Sue Henley, but I respect what she is doing….. and that’s why I wanted to post a quick Q&A with her……. Sue wrote a book. Pretty tremendous accomplishment, to say the least. Certainly not an easy task…. and the topic, well it can gut-wrenching exercise in story telling.

Sue entered a book writing competition and she needs votes in order for her book to be published! Voting ends May 3, so please take a moment to check it out……………. I’m thrilled to support her efforts, after all, as Sue says, knowledge is power and the more people learn about and understand this disease, perhaps the closer we’ll get to finding a way to stop it DEAD in its tracks. Sue, a Spiritual Peace Minister, certified Spiritual Counselor, Reiki Master, and now author, talks about her new book, Sara—Beyond the Veil, A Spiritual Look at Alzheimer’s Disease, below:

1. What prompted you to write the book?
My Aunt Sara developed Alzheimer’s disease over a couple of years. The last two years, she spent sitting in a wheelchair staring out into somewhere. I always wondered where she was—I felt she had to be somewhere with the love of her life, her husband.

2. How is you book maybe different from some of the books out there about Alzheimer’s?
I believe this book is different because it gives the reader hope that there is life after death, and that it will give them coping skills. Fear is about the unknown. Knowledge is a powerful tool.

3. What is your hope for the book or what do you hope to inspire within the reader?
My hope is that the reader will feel more at peace about what is happening to their loved one, and to them as well.

4. Most challenging part about coping with Alzheimer’s?
The most challenging aspect is having to look at the disease right in the eye, instead of hoping or wishing this wasn’t happening.

5. How about the most satisfying part of writing your book? (besides finishing it)
The most satisfying part about writing this book is that it helps to get the message out, there is more than just what we see here in this life—that there is something greater than what we perceive.

6. What is the most misunderstood aspect of Alzheimer’s/dementia?
I think the most misunderstood aspect is that it changes our loved one in that they respond to us differently. It feels as though we have done something wrong and can’t figure out what happened. Again, knowledge is powerful and if we can truly understand that it is not something we have control over, then we can begin to accept and release the need to control the situation. That is the best way to cope.

7. Top 3 tips for caregivers?
Never ever take anything personally.
Always stay in your heart.
Find support a support group that you can relate to.

8. Top 3 tips for someone who just learned their parent has the disease?
Research is so important.
Never be afraid to ask questions.
Be an advocate for your parent.


Guest Blogger: The Single Gal or Dating and Dementia

2425651754_c6ba81e235Karin and I got to know each other in our New York City support group. She’s incredibly funny, super smart, and a just beautiful woman with a dog who didn’t jump on me once at the Alzheimer’s walk last year. Karin is navigating the interesting world of dating. Dating with a demented parent is not easy. The inevitable “parent” question is bound to come up and you can either lie: “mother is on the junior league and volunteers her time to the poor and orphaned children.” Or you can go with the truth: “my mom  shits herself and spits on the floor at Target. What did you say your mom does again? Junior league and orphans, eh? That’s terrific. Check please.”

I wanted to share Karin’s story because she is doing the dating thing in a very open, honest and brave way. Navigating a world that is already filled with challenging situations, awkwardness, and plenty of weirdos is hard, often times sucky, and just plain exhausting… of course, there are a few good ones out there… if you meet them, hold on to ’em… but Karin is dating and she’s doing it with NYC balls, sass, and always grace. The woman is tough and amazing. I give her credit. Airing your dirty, or rather, demented laundry isn’t easy and can quickly end any first date… but can you blame anyone for walking away? I often wonder, if I get through this and meet someone going through this very same situation, would I want to take another walk though hell even if he is holding my hand?

Karin’s story:

I am currently single, looking to find the man who will be my mate, lover and best friend, all rolled into the perfect package.  The whole process of “dating” requires that you open yourself up to a virtual stranger, and let them into your world to see if you want them to continue to be there, and if they want to continue to be there.  Inevitably—what feels like sooner rather than later—the question of your parents comes up.  I used to consider just outright lying, “Yes, my parents have been happily married for 40-years,” but as a smart fellow support group member (Susan) told me, if they can’t accept my mother (and family situation) for what it is at the beginning, it’s doomed to fail.

Since receiving that bit of advice, I now respond with the honest truth.  I have no relationship at all with my father (parents divorced when I was young and haven’t seen him for the past 15 years or so), and my mother has Alzheimer’s disease. She has no idea who I am, what my name is, or that I am her daughter.  She requires full time care, drinks her meals because she has “forgotten” how to swallow, and wears diapers.

Before becoming sick, my mother was the strongest woman in the world. She worked a full time job,  then came home to support and raise my brother and I—on her own, with no real support to speak of.  The mother who raised me is my hero, and everything  my brother and I are today is because of her.  On the other hand, the person who resides in her body today is a stranger, someone I choose not to see because I want to remember who she was, and not be left of memories of this shell of my mother.

Sometimes, while out on dates my mother’s aide or day care program will call and those are calls that I have to take as they come, never knowing what the latest crisis may be.  I have learned to take and deal with those calls in front of dates—as embarrassing as it is for me.  I can sometimes look at someone after I’ve hung up the phone, and just know that its game over, won’t be seeing him again. Other times I am shocked that my date wants to know more about the situation and is supportive of me and my mother.

Since my mother’s diagnosis, I have not yet been in a relationship where I have had to talk about the fact that this may be a genetic disease.  That conversation frightens me for so many reasons.  Having that conversation means that I will have to address the reality that I may one day be like my mother (this was her fear as well, and here she is today,  just like her own demented mother). It also means I will have to tell a potential mate, that if they choose to spend the rest of their life with me, in thirty years, give or take, I may be just like my mother. Worse yet, I may pass on these faulty genes to our children.

Like any other 31-year-old single New York City woman, I’ve come to learn that dating has its ups and downs.  I’ve also learned that we all have our faults. But I do believe that I will one day soon find my “better half.”  As excited as I am to find him, it upsets me greatly that the woman who is responsible for making me who I am today will not be able to share in the joys of my future.

Image from Flickr by Adam Foster: http://www.flickr.com/photos/paperpariah/