Urgent Message for Caregivers – Contact Your Senators

I received the following message Friday evening.  I’ve already contacted both my Senators, please contact yours.

March 6, 2009

Dear NFCA Members -

Last week the House passed the FY09 Omnibus Appropriations bill that includes first-time funding of $2.5 million for Lifespan Respite.  However, there is significant concern that the bill could be delayed or even derailed in the Senate.

Please contact your Senators immediately (they are considering the bill right now on the floor) and urge them to support the omnibus bill and then mobilize your grassroots to do the same (Message Below).  If the omnibus fails a cloture vote in the Senate, Congress will revert to a year-long Continuing Resoution with most disability, health, education and social service programs funded at the FY 2008 level, and NO funding for Lifespan Respite.

All Senators should be contacted (see http://www.senate.gov/ for your Senators’ contact information), but the following Senators are leaning no or undecided and especially need to hear from Omnibus supporters:

Sen. Susan Collins (R-Maine)

Sen. Lisa Murkowski (R-AK)

Sen. Arlen Specter (R-PA)

Sen, Roger Wicker (R-MS)

Sen. Evan Bayh (D-IN)

Sen. Russ Feingold (D-WI)

MESSAGE: I urge you to immediately pass the Fiscal 2009 Omnibus Appropriations Bill and oppose efforts to pass a continuing resolution for the remainder of the fiscal year.

A continuing resolution would result in drastic cuts to vital programs that are already struggling to address the unmet needs of people with disabilities.  A continuing resolution does not permit even minimal growth in program funding to address inflation.

Moreover, long-awaited funding for the Lifespan Respite program would be completely eliminated.  This new program was enacted in 2006 to support the nation’s 50 million family caregivers who provide the backbone of long-term care in the US, but it has never been funded. This bill includes a modest $2.5 million for respite to help families avoid or delay much more costly nursing home or foster care placements.  In these difficult financial times, it is more important than ever that the federal government expand the safety net that protects people with disabilities and their families from untenable situations.

Please pass the Fiscal 2009 Omnibus Appropriations Bill.  Thank you for your consideration.

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Caregivers Must Be Flexible With Elderly Dementia Relatives

If you are a family caregiver for an aging relative who has dementia, you must be flexible.  Always expect the unexpected.

This morning I thought I was going to get Gladys up, give her a quick shower and then she would be off to the Adult Day Center.  That’s what I thought.  Among other things, she was soaking wet, the bed was wet and the floor under her bedside commode was wet.  So much for a quick shower.  I have to get it cleaned up quickly because today is physical therapy and the therapist comes at 3 PM.  I have errands to run before we pick Gladys up from day care, so now, instead of a leisurely day of tasks and errands, I’m running at full throttle.

Some days Gladys follows her routine to perfection.  Other days she can’t remember how to put on her socks.  I never know how the day will go, or if she will cooperate.  It’s not too frustrating because I know things can change at any moment.  I just try to allot enough time to deal with the unexpected.

Side Note:  If you have a bedside commode for your loved one and they sometimes wet the floor, you are probably concerned about urine stains and odor.  There are two things you might want to try.

• Lowes and Home Depot carry a plastic floor covering made to stick to carpet that you can put on the floor under the commode.  You should find it in the paint department.  This works but you have to continuously replace the plastic.
• Purchase a large chair mat made for carpet.  You can purchase these at most office supply stores.  I purchased mine at  Costco.  It doesn’t have to be replaced, cleanup is much easier and it can be mopped

Remember, flexibility is key.

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Caregivers Make a Difference On March 3rd – National Call In Day

Please make note of the following information from the National Family Caregivers Association March E-Newsletter

Make This the Year You Speak Up: Make a Phone Call on March 3

Family caregivers have a unique opportunity to make a difference on March 3 just by making a phone call. The Consortium for Citizens with Disabilities and the Leadership Council of Aging Organizations are hosting a national call-in day on March 3 to encourage our U.S. senators to include long-term services and supports in any healthcare reform effort.

Call-In Information:

When: March 3 (Between 8 a.m. and 5 p.m.)

Call-In Number: 800/958-5374

When you call, you will be asked which state you are calling from and you will be connected to your senators’ offices. Below is a sample script for your use.

Hello (state name and where you are calling from). I’m calling to ask the senator to help make sure long-term services and supports are part of healthcare reform. The nation lacks a comprehensive national public-private system for financing and delivering long-term services and supports for individuals with disabilities and seniors. We need a national solution for this national problem. Please ensure long-term services and supports are included in upcoming hearings and legislation. Thank you.

ENCOURAGE ALL THE FAMILY CAREGIVERS YOU KNOW TO JOIN THE NFCA COMMUNITY OF CAREGIVERS. THERE IS NO COST! Just click here: http://thefamilycaregiver.org

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