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Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 9/28/10

I am new to the site and very interested in any advice or tips you can give me! I am the sole caregiver to my 83-year-old mother. She has Alzeheimer's diagnosed a year ago and it is mild at the moment. We go through a lot of miscomprehension on her part, so I find myself raising my voice (I guess thinking I need to speak louder) which she considers yelling! We have been through this many times, but still it continues! Any advice?

I know that I need a break because I haven't had any time away for over two years. In August, I was planning five days away when my Mom came down with shingles. I had to shorten my time to just a weekend. It was like pulling teeth from an alligator to get my sister to stay with Mom! I did some research and a non-medical aide, not including overnights, was too expensive! I am hopeful that you might also have suggestions on low- or no-cost quality respite care. Thanks!


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Date: 10/01/2010
Time: 07:22 PM


Alzheimers Diesease is a journey. Understanding and trying to be understood can be a huge communication barrier. When communicating with an Alzheimers patient you need to speak slowly, make sure you have their full attention. DIstraction and enviornment can sometimes contribute to the lack of ability of concentration. If a you have their full attention and you know they hear you, they most likely are unable to comprehend what you are saying. Validation is a wonderful communication tech that has been delevoped. 1. Take a deep breath and refocus yourself self 2. when engaging/communicating with them dont expect unrealistic outcomes. Just remember one thing they are human and have human needs. visit valadation tech. on you tube and learn how to understand what they are trying to tell us. I recommend great prices great care.

Name: Susan
Location: Connecticut
Date: 09/29/2010
Time: 08:08 PM


See if your mom qualifies for Medicaid. Contact your Agency On Aging. They are listed in the phone book. There are programs through the Alzheimer's Association you might qualify for. If you go to church sometimes there are Parish Nurses that can guide you. Also check with your hospitals social services.

Name: Lori
Location: Colorado
Date: 09/29/2010
Time: 04:10 PM


You might call social services to get an assessment and information on programs in your area. You might also contact the local RSVP chapter as they have senior volunteers that help with companion visits and respite care. Was (is) your dad or mom a veteran? If so, the VA might have benefits that your mom may qualify for. See if you can get your sister & other family members involved by asking them to help out in lining out or finding some of these resources for you. If they don't want to come over, ask them to pay half (or all) of the care providers bill so you can take regular breaks. Figure out how much time off you need & how much that time will cost. Spread this cost as widely as you can. ($120.00, as an example, split in half might be doable for both of you.) Remind them if you burn out, then like it or not, they will have to come over. By getting them involved in these ways, (without their actual presence with your parent) could help them deal with the turmoil they are dealing with. That way, they are still helping out & can feel good about it. Blessings to you and yours!

Name: Rita
Location: Florida
Date: 09/29/2010
Time: 03:47 AM


You can contact the Alzheimer's Association or a local support group. Your area's Council on Aging also has programs. If you attend church, they may have a program. Hope this helps.

Date: 09/28/2010
Time: 02:55 PM


I went thru the same thing when my mother was first diagnosed with Dementia. I found that her hearing actually got more sensitive. Try repeating your question or statement, but in a different way. For instance, "Mom, do you want to eat dinner?", then "Mom, do you want some steak?" Regarding the respite care you need and deserve, have you contacted your local Office on Aging? They should have a list of Caregivers who may be able to help you out. Good luck with your journey and know that you are doing the best for your Mom, even though she may not be able to tell you that herself.

Name: Roxanna
Location: Champaign, IL
Date: 09/28/2010
Time: 11:18 AM


Call your local Area Agency on Aging and ask for the Caregiver Support program near you. They will be able to assist you with some respite.

Name: Linda
Location: Wisconsin
Date: 09/28/2010
Time: 10:51 AM


Communicating with someone with Alzheimer's Disease can be frustrating. Don't take comments personally. When you talk to her, use short, simple, familiar words and sentences. Keep background noise to a minimum so as not to distract. Don't argue, you will never win. Talk in positive terms, throw in a smile or a hug. Don't use slang "hop into the shower" as your mother just might. For respite, contact your Aging and Disability Resource Center (ADRC) or Area on Aging for information regarding their Caregiver Support Program. There should be state funding available that could help pay some of the cost. They may also have a "Chore Service" where you can hire a caregiver at less cost than though an agency. If you have an Interfaith organization in your county they may offer assistance. Or contact you local hospital or church for volunteers willing to provide repite. Remember, it's the disease your faced with, not your mother's true person. Good luck and God bless.

Name: Joanne Reynolds
Location: Crested Butte, CO
Date: 09/28/2010
Time: 09:33 AM


Hi, Carecoach here. I have three suggestions for you. First, if you've not read it, please get a copy of Jill Bolte Taylor's book, "My Stroke of Insight." Yes, it's about stroke, but what she has to say about the way she was treated will help you imensely in the ways in which you work with your mom. In particular, look at the back of the book for the list of "40 Things I Needed Most." The bottom line is that you needn't talk louder. Slow your pace down, use shorter sentences, and do a check-in after each to be sure your mom understands. If she doesn't, break it down to smaller bites. Next, time off. Yes, you absolutely need time off. Tell your sister to get off her duff and get involved so you can have time to yourself. There are all sorts of horrendous statistics about the health dangers in being a sole dementia caregiver. If you want some ideas about getting your sis involved check my blog at The bottom line here is that due to the effects of long-term caregiver stress, your health is at risk if you don't get the time to care for yourself. Ask your sister this question (and yourself, too): "If I become ill, who's going to care for mom?" Finally, check with your local Office of Senior Resources, Council on Aging, Alzheimer's Association, and Area Agency on Aging. They all have access to low-cost respite caregivers so you can get some time-off. Blessings, Joanne

Name: Annette Hans
Location: Salt Lake City, Utah
Date: 09/28/2010
Time: 08:27 AM


Medicare will provide a 3 day respite care every quarter. I know that's not much and I also have experienced family NOT stepping up to help. If you need to talk, contact me at

Name: Sharon White
Location: Pennsylvania
Date: 09/28/2010
Time: 07:46 AM


Just a quick note: Check your local chapter of the Alzheimer's Association, they sometimes have money for "Respite" care (funds to help the caregiver get a much needed break). Also, check your county Area Agency on Agency to see if they have a Family Caregiver Program, the program provides assistance to caregivers and they sometimes have funds also for respite. Hope this is helfful.

Date: 09/28/2010
Time: 06:37 AM


My praise for your service to your mom! First, read Gail Sheehy's book, "Passages in Caregiving" It's chock full of references and resources. There are other books that may help too--ask your library? Second, would your mom be eligible for Medicaid? They have several programs that might be helpful. Third, take as many weekend or even one whole day breaks as you possibly can. Do you have friends that could help out for a day? Do some shopping or chores for you? Don't hesitate to ask. Fourth, try to make contact with other caregivers, either online or in your city. They are the only ones who really know what you are going through. Blessings for you!!!!!

Name: tj
Location: md
Date: 09/28/2010
Time: 06:36 AM


Contact your local area agency on aging and ask about services available in your area; they may have a respite program and would have info on other programs. If there is an adult medical day care program, check it our and consider it at least 2 days a week. They should have a payment system that either bills medicaid and/or a reduced fee schedule. Good Luck.



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