Free booklet for Alzheimer's caregivers

18 years ago

Our compounding pharmacist gave us a wonderful resource for those who care for loved ones with Alzheimer's disease.

It should also be available at Wal-Mart pharmacies, www.alz.org and at www.alzheimersplaybook.com

Coach Frank Broyles, athletic director for the University of Arkansas Razorbacks, created:

"Coach Broyles' Playbook for Alzheimer's Caregivers (A Practical Tips Guide)" with a "Pocket Reference of Tips and Strategies."

When his wife, Barbara, was diagnosed, he researched and put together the information he found in the form of a coach's playbook, saying, "I approached Alzheimer's disease much like I would an opponent on the field, with a solid game plan and a dedicated team."

The playbook has detailed sections for dealing with early, middle and late stages, and the pocket reference targets common problems such as refusing care, wandering and communication.

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Comments (7)

vannie
18 years ago
There's also a book title "The 48 hour day" that is excellent. It's hard to imagine Alzheimer's until a member of your family has it. For anybody out there caring for someone with this disease, God bless you. Been there, done that.
petaloid
Original Author
18 years ago
I'll check that one out, Vannie. What you say is too true.

Anyone interested can read and download the coach's playbook and pocket reference on the site below:

Here is a link that might be useful: AD Playbook website
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When the caregiver is incapacitated...
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Comments (4)
In my case, I did as you did a lot of times--bit the bullet and continued to help her, even when I was in pain and needed to take time off to help myself. Luckily, I have 3 siblings--and I made it very clear from the start that when I needed help, I expected them to be there when needed to help out. I always took off summers to teach summer school (one sister was a teacher, so she took care of mom then) and a month in winter, when DH was on vacation (they all would rotate weeks to help out then). It does mostly, though, fall on the shoulders of the one person the others see as being 'available'. Toward the end, the last few years, it became too much for me to do it all, so we did hire home health aids to come in a couple of days a week to help out. A few suggestions. Does your mother have any specific health issues? If so, home health aids may be partially or totally paid for by her insurance. Check with her dr. and/or the local visiting nurse association to see if you can get something like that going. Does your mom live in a senior apt. building? If so--the management usually has a lot of helpful suggestions. There is probably even a shopping service available for the residents (you may be able to find one, even if she's in a private home--but that will mean a little more legwork on your part). How about checking with your church or local Good Neighbors Club? They usually have people who volunteer to help out seniors in those situations. I know you said your husband would do the work, but you could always get around that by telling him how much YOU need him at this time, and of course, he doesn't want you to be worried and stressed when you need to be concentrating on recouperation. You just have to approach this the right way, and you can get him to let the professionals help out a bit. You might also check any local agencies that offer help--depending upon your mom's condition--The alzheimer's Association, the Heart Association, etc often have free helpers who can come out a few hours a week. And most importantly--take care of yourself and feel better!
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Even though I am a relatively new caregiver, I am aware of the memory drugs. My mom has been on Namenda and Aricept for almost two years -- when she was initially diagnosed. I've read that they are only effective for 6 - 18 months, yet when I took my mom for her last check up (her doc is a Geriatrician who specializes in AD and memory loss) he encouraged me to keep her on the meds and said they do continue to help her. I just wonder how do you know that? I've watched her decline over the past two years...I suppose the decline would be more rapid if she wasn't on the medications. And yes, they are expensive, but so are the rest of her meds. I thought I'd mention, there is a program called "Circuit Breaker" and I'm not sure if it is state regulated or federally regulated...you can download an app and if your parent's income is below a certain dollar amount, they may be eligible for a senior drug card which covers many drugs (Aricept, Namenda, cholesterol lowering, and some others)...I was able to get my mom in this program and she pays $4 for her Namenda and Aricept. There is am $1,800 a year ceiling...once she hits that number, then she has to pay 20% of the cost of the drug...definitely worth looking into. Another option is checking with their doctor about a Patient Assistance Program from the pharmaceutical company -- Namenda is part of this program (they also make Lexapro)...again, if your parent's income is below a certain amount, the drug company will give the meds FREE...doctor just has to fill out a form for you every 90 days. I switched my mom from her internist to this doctor who specializes in memory loss and AD and that's when I learned of these programs - he has a social worker working with him and she was the one who made me aware of them. It is saving us hundreds of dollars a month on medications.
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Free guide booklet for Alzheimer's Care
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Comments (4)
I got this booklet through the Alzeimers web site. It is a very nice little booklet. My Dad has AD. The price was GREAT! You can't get better than FREE!!!
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Caregiver forum?
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Comments (22)
Glad to be here, just want you to know you're not alone. leahcate, that's very sweet of you to say. ;) The bed size pads are good size (covers from shoulders to waist easily). If he only gets out of the bed on one side, it could still work. Or maybe put the bed against the wall so he has to get out of bed on one side? (The alarm does trip if there's no pressure, then pressure, then none again.) Although on second thought, in that large a bed, if he rolled on & off the pad he'd be tripping it a lot. I'll keep thinking, maybe someone at one of the forums has resolved that issue. (My F-I-L had Alzheimer's, they ended up getting a hospital bed with rails. Tho you can just purchase rails. He was getting advanced at that point and it was necessary.) I did a quick google (they have something for everything it seems. ;) There are floor mats, like this one. That might tide you over till morning. My mom wasn't on sleep aids, but was groggy when she woke up. Nights were the worst. (Pre-alarm days.) I used night lights + motion sensing night lights + safety rails and she still took a couple nasty falls. I ended up buying a couple little 'personal alarms' for about $5 each at Radio shack. Fixed it so she could wear around her neck and simply pull it at night if she needed me. My stomach knots up just remembering the falls, she was on blood thinners & taken off because of it. :/ I found for home health aids, Amazon has a staggering offering. And for customer service, you can't beat Moen. (They make really nice safety rails for bathrooms if you ever get to where you need something like that, Lowes carries a good selection.) I bought a Deluxe bath bench on clearance, opened it up to find it had no back. So I emailed Moen to see if they'd send me one, because my mom loved that bench, and no stores around here had any in stock. I got an email back from a CS rep that he'd take care of it. Two days later I was amazed to discover an entire new bench delivered to my front door, no charge. And they were over $100 retail. Nice people!
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katclaws_mo
18 years ago
Actually, this is the book I think you are referring to:

The 36-Hour Day:
A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life
by Nancy L. Mace & Peter V. Rabins

I've read it and it's an excellent book & considered the "handbook" for caregivers of Alzheimer's/Dementia patients. Also, been there, done that.
jannie
18 years ago
Very helpful website, thanks. My DH has Alzheimer-like symptoms due to Multiple Sclerosis.
vannie
18 years ago
I guess the days just "seemed like" 48 hours! There's a lot more information out there than there was when my mother was first diagnosed w/ Alz. Tyler now has day care centers for these people so the caregivers can have some time off. Wonderful programs.
petaloid
Original Author
18 years ago
I posted the information about the booklets and the book on the GW Care Givers forum too.

A couple of people in my extended family have gone through this. I'm glad people have put together information that can help.

Here is a link that might be useful: ALZ website
katclaws_mo
18 years ago
"I guess the days just "seemed like" 48 hours!"
You are so right about that Vannie. I was the caregiver for both my Dad & Mom. My Dad was dx'd with Multiple Myeloma in 2004, but died from a massive heart attack in 2005.
My Mom was dx'd with Alzheimer's in 2001 & she just passed away this past December 30th 2007. I haven't even been able to post about it here until now or on the CG forum yet. It is still so raw & numbing for me. She died from pneumonia/sepsis. Both of my parents died in my arms.
So, the cancer & the Alzheimer's didn't take either one of them down the long, dark path it could've been. God was merciful not just once, but twice. I can't tell you how much I miss them both so much. I will never regret one moment of my caregiving for either one of them & would do it again in a heartbeat.

But,as you probably already know Caregiving is in no way easy--the stress on you & your family, your health, the heart break, the worry you're doing things the "right way", the responsiblity, the losses can be unbearable--and yet, we keep on trying to do what's best for our loved ones. It is a double-edged sword sometimes.

The Alzheimer's Association were wonderful. They've called me twice since my Mom passed, just to see how I was doing.
Most of all the caregivers I've ever met are Angels in disguise. God Bless them all!

Free booklet for Alzheimer's caregivers

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Free booklet for Alzheimer's caregivers

Comments (7)

vannie

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