Alzheimer's and Caregiving -- A Daughter's Story of Love

This week I had the great opportunity to talk with author Mary Ellen Geist. Several years ago Mary Ellen was described by the New York Times as the:

Archetypal career woman, a radio news anchor with a six-figure salary and a suitcase always packed for the next adventure, whether a third-world coup, a weekend of wine tasting or a job in a bigger market.

But as she saw the growing toll that her father's decline from Alzheimer's was taking on both of her parents, Mary Ellen climbed down from a great spot on the ladder of success and headed back home to Michigan to become a family caregiver. Over the last several years as she cared for her father, Woody, she also found time to write about living with the sorrow of losing a loved one bit by bit to Alzheimer's. Mary Ellen's struggle to salvage precious time with her dad is now the subject of her wonderful new book Measure of the Heart: A Father's Alzheimer's, A Daughter's Return.

I bought the book last week and confess that it's already dog-eared and tear-stained because Mary Ellen's story hit me up close and personal. My 89-year old mother has had dementia for 20 years. The neurologists can't seem to agree on an exact diagnosis but Mom's memory and cognitive abilities have severely declined to the point where she now needs round-the-clock care in a secured assisted living setting. That means a locked facility where she can't wander away.

What's so sad is that I often forget what Mom was like before she went into her "cave" which is how I rationalize her disease to myself. When she first started to experience symptoms, it's like she went into a cave where no one else could enter. In the early stages, she ventured outside the cave, interacted with people and the environment until some call we couldn't hear beckoned her back inside.

As the dementia progresses, people like Mom and Mary Ellen's dad find themselves further and further inside the cave. It takes increasingly more effort to approach the opening let alone step outside into the world where others wait - with hope -- to see a glimpse of the way they once were. And then one day, they don't even see the opening and the cave becomes - well, everything and nothing. That's where my mother is now.

So what are the chances that Alzheimer's will hit close to your family. Brenda Avadian of the Caregiver's Voice, a resource site and a blog for caregivers gives the grim statistics:

During the past decade, we've witnessed a 25% increase in Alzheimer's. Today, reports estimate that 5,000,000 Americans live with this disease, up from 4,000,000 a decade earlier. Projecting these numbers forward, we're looking at 6,250,000 Americans being diagnosed with Alzheimer's by 2017 ... unless there's a cure.

As a member of the Baby Boom generation, I cannot imagine a more active group of people being stricken with this disease. Yet, this figure will reach epidemic proportions. Each of us will be affected--as a caregiver, as a family member, or even, as one who receives the diagnosis.

As the need for caregivers increases, family members like Mary Ellen will continue to make huge compromises in their personal lives and finances to provide the care needed for loved ones with Alzheimer's and other diseases of aging. According to AARP, this economic impact of family caregiving reached $350 billion in 2006.

Mary Ellen will share insights on the life and lessons of a family caregiver in the upcoming podcast interview she's agreed to do for BlogHer readers with yours truly. And she wants to hear from you.

So bring your questions on Alzheimer's and caregiving in reply to this post. I'll include them as part of my interview with Mary Ellen later this month. As I see it, it's a way for us all to benefit from our collective experience and wisdom on this difficult part of midlife.

Submitted by midlifemuse (view blog

) on Fri, 09/05/2008 - 22:34

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Excellent post. Thank you .I

Excellent post. Thank you .I think I'll check and see if the library has that book.

I'm currently dealing w/ Alzheimers with my Grandmother. It's been decided that she needs to go live in a facility (on a locked ward) and I have tremendous guilt over this. I can't help but feel that I should be caring for her. My Grandma raised me until I was 12 and went to live full time with my mother. I feel like I owe her,I guess and that I'm failing her. Guilt and helplessness...those are the themes that run through Alzheimers from my perspective.

Submitted by Jupitersinclair on Sat, 09/06/2008 - 04:36

It's tough.

Guilt is usually a part of this picture somehow. My grandma helped to raise me and I felt bad because I didn't move in and help her when she had a stroke, but the reality is that caring for a grown person with a progressive illness is much different - and arguably more difficult - than caring for a child (as challenging as that can be.) Most of us can't do it with the physical, financial and emotional resources we have.

I was a social worker for the Alzheimer's Association for several years
and saw many caregivers get sick and a few die before their person because it's a tough, stressful, full-time job. People can only do what they can do...and usually that means getting help whether it's home care or adult day care or a facility. It's not a failure. It's doing what you can in a really difficult situation. I feel for you - I've walked the road myself and I wish you peace with the outcome.

Laurie

LaurieWrites

Submitted by lauriewrites on Sun, 09/07/2008 - 16:55

Thanks for your wisdom

Laurie-

I'm printing your comment and making a copy for both my sister and me to post on refrigerators (we're big on using that white space for important reminders). Your advice is something we need to remember - and remember again. Doesn't all this make you wonder how our society is going to cope as millions of Baby Boomers move into the wicked grip of dementia?

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 18:02

How Do We Lose the Guilt?

One of the toughest parts of having a loved one with dementia is that you always feel guilty about taking the next step for their care. Don't. Just trust, Jupitersinclair, that what you do will be the right thing. And just for the record--I'm still learning to do that.

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 17:41

Be strong!

Hi, i´m a psychology student here in Brazil,i´ve being learning about the dementia and i have some close friends who have it, well i can´t say that is a easy thing to deal with, but i´m here to show my solidarity. In my research i could learn about the deseas in Brazil so i´m going to say some statistics; The appraisal is what exists , today into the Brazil 1,5 million of people with age equal or better the 80 years has the desea in 2017, will be 2,4 millions.

Well, to deal with it you need love, and to be patience.

Everything is going to be better, just have a positive hope and be strong all the time, cos they need you and you need them.

Hugs from Rio de Janeiro!

Fee! =]

Submitted by fernandatolomei on Sun, 09/07/2008 - 11:20

Solidarity is such a gift!

Fee--

You are so right that in dealing with someone with dementia, you have to focus on the positive. The negatives of dementia and Alzheimer's can drag you down. When my mom first went into assisted living and I would visit, I'd sit in the car and cry afterwards. And with the stats you just shared about the coming impact of dementia, I feel like crying right now. It's like a tsunami.

But back to the positive--I'm so glad you wrote. Hugs back from Michigan!

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 17:51

My husbands Gran has dementia...

Between that and her stubborn attitude it was decided that she needed to be in a facility.

However, it is five minutes away so our days are spent visiting or taking her out and dealing with angry calls from her abotu ANYTHING.

She sure remembers SOME THINGS for like ever.

But it is hard..specially knowing that his mom would have been dealing with this instead of us bearing the brunt, had she lived.

Look for me at http://crunchycarpets.com or check out the ladies at www.wetcoastwomen.com

Submitted by Crunchy Carpets on Sun, 09/07/2008 - 11:27

Dementia Behavior

Wow. I'm so glad you mentioned the behavior issues with your husband's grandmother. Do you think it's more personality changes from the dementia than her just being stubborn? It's something I don't usually talk about but we've seen the same thing with my mom. I hate to admit it, but she can be incredibly difficult. And she can remember more negative stuff than anyone I know. Somehow the dementia took away more good memories than bad. I really wish she could be more at peace at this point.

BTW--love the nap picture and no I don't think your daughter will hate you :-)

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 18:09

Yeah she was always paranoid..

and the dementia has made it worse and she will carry a grudge like NOBODY'S business...THAT she can remember.

She just also refuses to look after herself...which is why she ended up in care in the first place.

So the dementia has made her old traits worse...maybe that is how it works...

Nobody was sure she had dementia as she has acted 'flakey' for as long as I knew her.

It wasn't until her daughter was ill and then died that I had to lay it out for her..that if she couldn't feed or take care of herself we would have to put her in a home..(I have small kids - was not going to take her on)....

I don't think she really realized it all till we had her assessed.

So she has gotten even more stubborn and more distrustful and we are all out to get her...very tough.

And thanks about the pic!!

hehe underwear..youz doin it wrong!

Look for me at http://crunchycarpets.com or check out the ladies at www.wetcoastwomen.com

Submitted by Crunchy Carpets on Sun, 09/07/2008 - 19:29

HEROIC CAREGIVERS

Thisis a moving and timely pos Karen . As a boomer I worry all the time and follow all the prophylactic suggestions and am a long-time consumer of fish oil, etc. It's so scary.

The story you tell is a remarkable one. It's one thing to praise the commitment and I think heroism of someone like Geist, but it's much more than a convetional heroic act. This isn't just jumping in front of a car to push a kid to safety. This is all day, every day, for a very long time.

I just met an amazing family. They haven't been married long, and had a baby less than a year ago. But her dad isn't well so he lives with them. That meant they needed a bigger and therefore more expensive house which meant they had to live farther from the institutions that support their daily lives. They seem to have decided it together and are pretty matter-of-fact about it. It's so damned impressive - and inspiring. I can't stop thinking abou them.

Cynthia Samuels, Partner
Cobblestone Associates, LLP
Blog and Media Strategies and Content Development Online and on Television

Don’t
Gel Too Soon

Submitted by Csamuels on Sun, 09/07/2008 - 12:24

Caregiver Are Everyday Heroes

Cynthia--

I know what you mean about that worrying. Recently my daughter-in-law said that if I was ever not able to care for myself, she and my son would step in. It was oddly reassuring but who wants to be a burden. So like you, I take fish oil and try to keep my brain really active.

People like the family you mention are truly everyday heroes as they step in to do the "heavy lifting"--the day to day caregiving of aging parents. That's how I feel about Mary Ellen and others like her.

Thanks for your insights.

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 18:23

thank you

Thank you for you post. Alzheimers is a progressive illness that is very difficult for everyone to deal with on every level. I appreciate the way you said that you got to the point where you did not remember what mom was like. So often many caregivers cannot or will not express that. They feel guilty saying it as if somehow they should be responsible for the illness and often feeling powerless losing someone they love into the cave as you described. Yes, the services for Alzheimers clients are very very expensive as most of the care is assisted living or non-medical type services and those services are not covered by Medicare. Most individuals have to pay out of pocket to care for a loved one. Thank you for sharing.

Comfort Keeper

www.comfortkeepers.com -provider of in-home services for those suffering from the disease of Alzheimers and/or dementia.

Submitted by comfortkeeper on Sun, 09/07/2008 - 13:44

Thanks for Your Acknowledgement

You know, I often find myself writing things in my blog posts that I haven't said out loud. It's helped me find my voice. So thanks for acknowledging my comment about my mother. I haven't really shared that with anyone and now I shared it with the world. Go figure.

Thank you Comfort Keeper for the much-needed, often under-appreciated work you do to help care for Alzheimer's and dementia patients. It's God's work.

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 18:30

Another great resource

Thanks for a great post on a sensitive and difficult topic. I've found that families don't know where to turn to for help. I'm going to make time for the podcast.

I've been recommending a great resource to my patients and their families. www.Caring.com.

It helps families connect with and find all types of resources for their elderly family members and is especially helpful for people with Alzheimers.

Be well,

NurseBarb

www.NurseBarb.com

Submitted by NurseBarb on Sun, 09/07/2008 - 16:15

Visit Caring.com

NurseBarb--

Thanks for the heads up on Caring.com. Just stopped over there and found an amazing wealth of info that caregivers can use. Will add this to my blogroll. Looking forward to your feedback on the podcast.

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 18:41

Check with the local chapter of the
Alzheimer's Association.

Click on the map on their site to find it. They're a national nonprofit organization and check out really well on the charity checklists since the bulk of their money goes to research and advocacy/education.

They have a ton of material on the national site and in their local offices for caregivers. Dealing with this disease is really difficult and it can be terribly isolating. The behaviors are so unusual and people can stay physically strong for so long that it often really helped people I worked with to understand what was happening with their relative - Alzheimer's as a neurological disease rather than a random set of behaviors from a person who can't really communicate like they used to or "get with the program."

The chapters can also hook you up with support groups (even some for folks in early stages), care managers, financial and legal information - you name it - and most of their services are free or at reduced cost. A lot of my work with caregivers dealt with communication - ie, what to say when they ask questions, reducing arguing, going along with memory lapses that just weren't that important (like is it really necessary to correct them if they think it's 1984? No, not so much...not if it keeps things calm and stable.) Of course this is much more difficult when it's someone close to you, but it can be done - I've learned to do it with my grandma, which was very hard.

Millions of us will handle this disease in ourselves or a relative in a lifetime and it's a good idea to reach out for support.

Laurie

LaurieWrites

Submitted by lauriewrites on Sun, 09/07/2008 - 17:06

So Glad You're Here

Laurie--

I'm so glad you're in this discussion thread bringing much-needed advice and valuable resources. How to communicate with dementia patients could--and maybe--should be it's own lengthy discussion.

Karen

Visit me at Midlife's A Trip.

Submitted by midlifemuse on Sun, 09/07/2008 - 18:51