There Are NO Alzheimer’s or Dementia Survivors. None. Zero. Zip. Nil. That’s a Problem.


6 Reasons You Should be Scared of Alzheimer’s & Other Dementias

1. Alzheimer’s disease is the sixth leading cause of death in the United States.

2. More than 5 million Americans are living with the disease (I’m guessing this figure does not include Americans living with other types of dementias like FTD).

3. 1 in 3 seniors dies with Alzheimer’s or another dementia.

4. In 2012, 15.4 million caregivers provided more then 17.5 billion hours of unpaid care valued at $216 billion.

5. Nearly 15% of caregivers for people with Alzheimer’s or another dementia are long-distance caregivers.

6. In 2013, Alzheimer’s will cost the nation $203 billion. This number is expected to rise to $1.2 trillion by 2050.

If you haven’t been touched by dementia, you will be. It’s only a matter of time. If you have, then you know more needs to be done in terms of funding and research. WE NEED A CURE!

5 Tips for Talking to Someone With Alzheimer’s Disease


1. Diminish distractions.

2. Converse one-on-one.

3. Keep things simple.

4. Avoid arguments (this should be number 1).

5. Just keep talking.

I would also like to add:

6. Walk in their shoes.

7. Step into their world and speak their “language” (even if it makes no sense………………… my mom was only able to articulate herself using the words, “despierta America” and “la fruta”).

8. Take a deep breath if you get frustrated (because you probably will).

9. Talk to other family and friends about how to best communicate with your loved one. They might keep visiting if they feel like they’re actually helping or supporting the person with dementia.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

Five Survival Tips for Caregivers

Caregivers bear the brunt of a lot, which is why, in the process of caring for our loved ones, we need to take care of ourselves, too.

Or so I tell myself every single day.


A Different Point of View

Me and My Mom
Me and my mom

One of the biggest challenges I face when I talk or visit with my mom is remembering that this woman is still my mom. It’s easy for me to put up my wall and distance myself from her, and I do, often, because the hurt of her transformation into this now sometimes incoherent child just burns right through my heart—and when I start contemplating the future, my wall grows taller, thicker: more memories lost, maybe even my face and the physical stuff too… there may come a day when she can no longer control her bladder or she may be unable to bathe herself or she may accidentally hurt herself.

Worse yet, my wall sometimes means I can’t give my mom a big hug because for me, it’s just too hard to do. I want to, but there have been times when I’ve recoiled from her touch, not meaning to hurt her, but I’m sure I do.  I hate myself for that and I try with every visit to get beyond my wall, my inability to connect because with her because if it were me in her shoes—losing myself—I would want the touch of my only daughter to comfort me.

So when I read an article in the Trinidad and Tobago’s Newsday about a 46-year-old woman named Christine Boden who suffers from AD, I knew immediately that I had to keep this as a handy reminder—and share with you. Boden offers “Caring Tips” from her own perspective to family and friends coping with a demented loved one. I think it’s easy to forget that these human beings are not the disease they are suffering from. They are still our mothers, our fathers, our sisters, and our brothers. They are our friends. I sometimes need to be reminded of that. I hope you find her words as touching and heartfelt as I did:

Living with Alzheimer’s
By Angela Pidduck

“Give us time and space to try and keep us doing as much as we can. Don’t take over! Let us make mistakes or fail, but don’t let us feel a failure. Help us not to give up.

“Maybe get us a diary, and help us parcel our activities for each day, and remind us about the day’s activities to get a sense of ‘Tuesdayness’, or ‘Julyness’, and to register what we did yesterday or last week.

“Think up some sort of “brain gym”—reading children’s books, magazines, perhaps. Watching quiz shows. Newspapers, board games, crosswords. But make sure we don’t feel overwhelmed. Watch carefully for signs that we are blanking out, or just giving up and going back into our shell.

“Is there a way you can help us carry on doing at least some of the household chores? Maybe signs around the house, lists each day of steps to take for each task. Don’t do it all for us—surely there is something useful we can still do.
Continue reading “A Different Point of View”