Alzheimer's Disease: Avoiding the Biggest Mistake

An estimated 5.4 million Americans have Alzheimer's disease. For every one of them, there are three unpaid caregivers: about 15 million people providing 17 billion hours of unpaid care each year. William Thies, Ph.D. -- the Chief Medical and Scientific Officer of the Alzheimer's Assocation -- told me that way too often those caregivers fail to seek appropriate help and are unaware of free or low-cost resources.

Care-related stress can cause poor health that strikes down caregivers just as surely as Alzheimer's devastates its victims. I recently visited Mike and Carol Daly, a wonderful couple in their late sixties. Seven years ago, Carol was diagnosed with Alzheimer's disease. Mike is a former New York City cop, married to Carol for 47 years and still deeply in love with and devoted to his wife. When I first met them almost three years ago, Carol knew she was 65 years old; now she doesn't have a clue. Mike has been pretty much going it alone. He doesn't want to bother other family members or anybody else for that matter. Since I last saw him, he's gained 15 pounds, no longer exercises, and takes medications for sleep and anxiety.

Mike is old school, salt of the earth. He doesn't complain, he doesn't ask "why me?" He also doesn't clearly appreciate the toll the past several years have taken on him. A few hours after my recent visit, he emailed, "Yes, caring for Carol is not easy but it does not stress me out. Yes, I know the day will come when I will not be able to care for Carol by myself. Yes, I will eventually have to seek out help."

Eventually.

Why wait? Getting caretakers to seek help sooner rather than later is a major goal of the Alzheimer's Association. Here is a link to specific advice from that organization: http://alz.org/we_can_help_we_can_help.asp

In the meantime, Mike Daly absolutely blows me away. In this two-minute segment that ran on the CBS Evening News with Katie Couric, watch the way he gently and lovingly applies her makeup. And -- at the very end -- check out the way he looks at her, all these years later, for better or for worse.

 

Comments

[VNSNY News]

01:10 PM on 04/05/2011

I want to stress to all caregivers to remember that they are not alone. There is a ton of information and help out there for caregivers. I'd like to promote the Visiting Nurse Service of New York as a place for a host of information and services. Even if you are not in the New York City area, check out their site for articles like Avoiding Caregiver Burnout http://www.vnsny.org/home-health-care-and-you/quick-tips/avoiding-caregiver-burnout and http://blogs.vnsny.org/2009/12/22/avoid-caregiver-burnout/ You can also follow VNSNY on Facebook (http://www.facebook.com/vnsny) and Twitter (http://twitter.com/VNSNY_News) for news and important information for caregivers. Take care of yourself! Stav

[BobDeMarco]

10:46 AM on 04/05/2011

Jon...

It might be interesting if you could elaborate in a future article on William Thies comment that "way too often those caregivers fail to seek appropriate help and are unaware of free or low-cost resources".

I would agree with Dr Thies' comment that most Alzheimer's caregivers "are unaware" of free services.

Are these services available to anyone? Or, only if you are "poor".

Is there any specific hands on service that is free and available from the Alzheimer's Association? Like respite care? Or, a free volunteer program to help an Alzheimer's caregiver?

Does the Alzheimer's Association offer any in home service that could benefit Mike Daly?

I do think this article could bring great help to Mike Daly personally as his "band of brothers" read the article, and become aware of his situation.

Bob DeMarco
Alzheimer's Reading Room
http://www.alzheimersreadingroom.com/2009/08/alzheimers-reading-room-testimonials.html

[Asmodeus]

03:03 AM on 04/05/2011

I was a CNA in a geriatric care facility for 5 years. What I saw most were families that waited as long as they did, simply because getting help was too much money for them to pay. Even when trying to get government assistance, I heard horror stories from patient families, and fellow caregivers alike, how hard it was to get any.

Taking care of an Alzheimer's-afflicted patient at home can destroy a person, or family. Unfortunately, very often, so does seeking help. Damned if you do...

People will always suffer from one affliction or another. Entropy is the ruler of all. That doesn't mean our means of caring for, treating and even curing them has to. I left the entire field because I couldn't watch anymore as a small private nursing home whose entire function isn't simply the maintenance of dying bodies and minds, but maintenance of dignity, turn into a mill.

I finally left when one of our most beloved patients died, along with a string of long-time patients from a terrible flu that was even incapacitating we, the staff with pneumonia. The Administrator was berating the Director Of Nursing about not keeping said beloved patient alive a little longer, (in disregard of a DNR order) because now she had to refund two weeks worth of money back to the patient's family. I turned in by two week notice the next day, and went to work at 7-Eleven. Done.

[AccezzTom]

11:51 PM on 04/04/2011

My wife works with people who have alzheimer's every single day; she is the Director of Nursing. She has worked with seniors for greater than sixteen years. Alzheimer's is a disease no one wants. In the twenty-four years I spent taking care of others, I took care of several people with this disease as well.

It is heartbreaking to watch people diminish, not matter what form of disability they may experience. Alzheimer's disease is particularly difficult because it involves a diminishment of not only the person's mind, but their very memories of who they are as a person. The only way to respond is in the same manner the person in this article has - with incredible amounts of love, patience, and caring.

[drosenth613]

09:49 PM on 04/04/2011

For Alzheimer's patients who have not degenerated to a vegetable state, I would recommend sending the patient to an Adult Care Center, at least for part of each day. There was an interesting article on this topic published recently here, http://www.afterfiftyliving.com/healthfitness/healthfitness/direct__eb__13393, and I recommend reading it because it has solutions to relieve stress on the caregiver.

[alkamm]

04:05 PM on 04/04/2011

My brother is taking care of my mother in her late stages of Alzheimers. He cleans her, feeds her, gets her out of bed and into the wheel chair each day. He pays a couple guys 10 bucks to come over and help him for an hour or so. He was going to get some Veterans Benefits from my father's service, but she isn't in a home, so they are balking.
Basically, he's earning her house by taking care of her. Federal assistance only kicks in when the assets, including domicile, are run through. With a bit more help, many people could help their relatives enjoy the end stages of life without going into the lucrative private home industry where fortunes are spent in the last months of life. Plus, the government would save money.

[Ioan Lightoller]

08:48 PM on 04/04/2011

Fanned and faved. Disgusting that the feds will help only when NOTHING is left. Nursing homes are not only lucrative--they are in many cases, the WORST place for a child to place a parent...or anyone place a person that they love. Many nursing homes hire those who have criminal records and in the years I worked in nursing homes, I saw plenty of abuse--one Alzheimer's patient was struck with a gait belt (used to help support patients who have trouble walking to lessen the possibility of falls. I reported to administration and NOTHING was done.

Maybe if the government wan't in bed with the nursing home industy, we could getr support for homecare. In most cases, homecare is the preferred course--patients tend to do better at home.

[rationalopinion]

10:32 PM on 04/04/2011

My Dad has Alzheimers. My parents worked (and saved) all their lives, and now every cent my Dad has is being sucked up by the nursing home, which we pay for out of pocket. My family is not wealthy, and $6000.00/month is a huge burden. I don't know what people are going to do when more baby boomers are affected by this horrible, horrible disease and there is no money available to help them

[alkamm]

08:13 AM on 04/05/2011

I would say that people with criminal records might do quite well taking care of the elderly. They sympathize with the confinement, the harsh treatment that is possible. Case by case basis, and give people a chance at redemption. Many people who have never made mistakes can snap under the strain of taking care of the elderly.

We're such a corporate society, we can't handle individualism any more. The government doesn't trust the ability of individuals to do these tasks, even though most studies say that keeping people in the home can increase their quality of life. Yes, when the baby boomers hit the fan, maybe we could set up new paradigms, help each other out instead of farm each other out. Cut costs.

[Calebsgm]

03:19 PM on 04/04/2011

This man deserves a medal for the care he is giving his wife. I would hope that he soon realizes that he is ruining his own health. I cared for my Mom for 5 years, although her problem wasn't Alzheimer's. I was so busy making sure she was eating right and getting her medications at the right time, I sometimes forgot to take my own meds. She is now in a nursing home. I visit her every day and I believe she is getting better care that I could give her at this point. At least before she was able to be alone during the day while I work. Now she needs 24-hour care, which I can't do myself and can't afford to pay someone else to do.

[Joe Lucido]

03:14 PM on 04/04/2011

It's for people like Mike Daly, that I am about to launch a new organization called the Alzheimer's Research Association. I had been a caregiver to my father who for 12 years battled Alzheimer's.
When he first was first diagnosed in 1998 there wan not a lot places for information for Caregivers to go to for answers. Today google Alzheimer's and you get an overload of information, and trying to find the exact answer to a specific question is next to impossible without spending a lot of time sifting through a piles of other information that you as a Caregiver may or may not be interested in.
It is my hope to give Caregivers a place to go to, to get the answer they need now. We do this by researching for information that will be of use to the Caregiver. And making sure it's posted on our blog and website, and if all fails call us and we'll do our very best to get that info to you ASAP.
We are not yet finished with the website yet, but if you would like to check us out you can go to
http://www.alzheimersresearchassociation.com/ or our blog at: http://alzra.org/wordpress/. Please keep in mind that we are not yet up and running, we hope to be in the next week or two.
It is our hope to help Caregivers of Alzheimer's patients a more rewarding experience.

[jkel]

02:56 PM on 04/04/2011

I've been taking care of my dad for 6 years. Anyone who hasn't watched the precipitous mental deterioration of an Alzheimer's victim can't imagine the heartbreak. My dad was a Naval aviator for twenty-four years, now he's incontinent, can't sign his name, can't even find his room. Imagine seeing a man who once landed Corsair warplanes on aircraft carriers, and who could find his place anywhere in the world using dead reckoning, trying to shave with a toothbrush, or not remembering that he has a son, daughter and two grandkids. And now here comes the baby-boom generation who've been outsourced, downsized, and have no savings because there are no more pensions. Personally, I watch the Republicans, the Democrats and even our so-called Democratic President gleefully plotting to unravel what remains of America's social safety net and then hand off the remains to pirates on Wall Street and all I feel is dread and rage. Dread and rage.

[SDH283]

09:30 PM on 04/04/2011

You know, the 'answer' is in your second sentence. If you haven't dealt with it, you have no idea of what it entails, and what is ahead.

There are people who do know, Maria Shriver, the Reagans, but ... they are wealthy, and their wealth has permitted them to 'live' outside the horror -- and I don't use the term 'horror' lightly ...

[The Swish Arthouse]

02:22 PM on 04/04/2011

The Swish Arthouse in Maynooth, Co Kildare, Ireland, has just launched The Swish GPS Tracker for persons with Dementia, Alzheimers, Atusim, Down Syndrome. A Neat Matchbox Size GPS Tracker and free to Air! The Swish GPS Tracker is the perfect protection for persons in vulnerable situations. You can ring the tracker and it will return exact information on the location of the person in distress. There is also a panic SOS button which will send a ‘Help me’ text to your phone with the longitude and latitude co-ordinates. The Swish GPS Tracker works in reverse to a mobile phone, in that you can proactively decide when to monitor a situation that is unique to yourself. The key here is that there is No monitoring fee, No contract or monthly subscription fee! After the initial purchase there are No extra costs. http://www.theswish.ie/swish-tracker.html

[SDH283]

09:31 PM on 04/04/2011

Good info for many people to be sure.