Following is some encouraging news for caregiving families: an excerpt from, 'Lifespan Respite Care: One Woman's Fight' by Suzanne Mintz, president and co-founder of NFCA, in "TAKE CARE!" Spring 2007, a free newsletter of the NFCA

Perhaps we, in the U.S., should all be phoning and writing to our state legislators!


"On the very last day of the 109th Congress (December 8, 2006), family caregivers won a great victory: A five-year effort to gain passage of the Lifespan Respite Care Act came to a happy--albeit nail-biting and, to some, a surprise--conclusion, with a voice vote in the Senate. Two days prior, on December 6, the same bill was passed in the House of Representatives. On December 21, it was signed into law by President Bush...

"...All family caregivers crave respite. When asked what they need, the answer given most often is: 'Time for myself.' Finding that time is never ease: It's too expensive, the providers are not well-trained, caregivers feel guilty about wanting to get away, the waiting list for public programs is very long, and the list goes on.

"Lifespan respite programs are designed to break down those barriers. They pull together all the diverse funding sources for respite that exist in their state because of the value of the total pool really is worth more than the sum of its parts. The pool of funding creates far more flexibility in meeting the needs of individual family caregivers. They provide 'one-stop' shopping for entry into the system; yet they function on the community level. They train respite workers, both paid and volunteer. They bring together an array of community groups and family caregivers to guide their activities and provide diverse services. They raise the public consciousness about the need for respite for caregiving families, and, when possible, provide critical funding sources for family caregivers who don't qualify for any other respite program.

"Now with the passage of the federal Lifespan Respite Care Act, many more states will have the opportunity to develop programs for their citizens. It wasn't easy getting this far, and the fight isn't over yet. Once a bill is passed, the money to fund it has to be appropriated by Congress--and effort that is ongoing now...

"...There are now four states with respite care programs and several others that are making great progress on getting legislation passed (See the winter 2007 issue of TAKE CARE! for a profile of CCAN volunteer Bonnie Danowski of Arizona and her efforts in this area.) Hopefully, your state won't be far behind."

To learn more about Lifespan Respite Care Act of 2006 (H.R.3248.ENR)

GO TO: www.thomas.gov/home/multicongress/multicongress.html

FILL IN: Lifespan Respite Care Act

CLICK ON: "109th Congress," "Enrolled Bills Sent to the President," "Both House and Senate"

This message has been edited. Last edited by: mariabee,

Hi all especially Bettyhear.....asking my son for 2 days and going to the beach is a great ides. Years ago my hubby and I were fighting and I took off and spent a couple of days down at Laguna Beach looking at all the art/paintings and came back renewed. loved it and made up with hubby. Next month that is what I am going to do!!If anything happens it is only a couple of hours away but I am sure all would be fine with him.
Thanks for the suggestion

quote:

But I am thinking it's harder to go than to stay.

Most of us have felt this way. I remember early on when a doc asked me if I was afraid to leave the house--and I was. I wish if I told you not to worry so much about things, to go to the wedding and enjoy this happy occasion, that you could do that, but it is very hard and those worrisome thoughts just won't go away. However, that is what I am going to do, tell you to go to the wedding and have a good time. Your experience w/bro & SIL was bad, but it can work out well w/others and I hope it does.

Sandranne, I remember that issue with your brother and sil. Did you ever get an official sign off from APS? Put the family back in their rightful place? (that would be the bottom of the landfill, right?) I can understand everything you say.
I don't worry too much about my Mom with her CGs, but even when I'm not there, I'm on call, and I call in. I don't know if you are a church member, or associated with any civic group, But that's the way we went about finding the first of Mom's CGs. An older church member was moving to assisted living, and her part time highly reccommended companion was looking for something part time. Never went through an agency. Then that lady had a niece who had some training as a CNA but didn't finish the course because of a car wreck, and was saving money to start over by working in house keeping. She is still here. Fortunately Mom is a sweety, and can tell me who she likes or doesn't and why, then If the person is honest and reliable, we have a sit down to work it out. Sometimes, it's been as simple as Mom wants more salt on her brocolli. Or the person can't find Andy Griffith on TV.
Anyway, that is how I find people and I know I (Mom) has been very lucky. She is on a budget, and that is hard to keep. This is less expensive than an agency, but no way is it cheap, or easy. Still for Mom's sake as well as mine, I just can not be the only one. Sooner or later, a conflict will arise. For our LO's wellbeing, there should be a Plan B. I have found I must give a person a regular day a week, if I have a prayer of a fill in in an emergency. (and emergencies do happen). Heaven forbid, but what if you need a root canal.
Sorry, I'm always on the edge of freaking out and starting a rant. Anyhow, that's how I started finding people.

Bettyhere,

" but I do think that many AD caregivers are like new mothers who think no one can possibly take care of my baby/mom as well as I can and so they get sleep deprived and neglect their own well-being. I've been thru it so I well understand the challenges & costs of getting someone you can trust. But if you have the chance for a day, just a day, every few months or so, grab it for yourself. Your well-being is every bit as important as your loved one & chances are she'll be OK.[/QUOTE]

After having had some horrible experiences leaving my oldest bro & SIL with my mom, FOR JUST ONE NIGHT, yes I DO feel that way.
I will be trying an agency this afternoon as hubby & I have to go to his son's wedding rehearsal...we will be leaving at 2 and returning at 11 pm.....then leaving again tommorow at 2 in the afternoon and staying overnight til Mon. at 11 am. I have to tell you it is stressing me out I am so worried.
This agency was refered by one of her docs and comes highly recommeded....I have tried to cross my t's & dot the i"S on all this. I feel as though I am abondoning her.
But, at the urging of her doctors, home health nurse and hubby, I am going. They are telling me I'm burning out (uh, no S___T!!!) But I am thinking it's harder to go than to stay.
I think I'll skip the wedding , lock myself in the hotel room or in a cabana at the beach & sleep! with my cell phone in my hand, probably calling Mom every hour! LOL
I just am praying it will be okay and not too upsetting for my Mom. This is my main worry.
She paces at night and she is a smoker, she can't smell or taste due to a prior skull fracture....what if the girl (lady) doesn't wake, my mom comes out on the lanai in the middle of the night to smoke , falls asleep w/ the cig in her hand.....what if she gets up to go tinkle, she is unsteady & needs help....what if the girl doesn't wake? and on and on &........
I am trying to stop these feelings, but I can't. See, I think it makes it even harder when you have already had your big brother, who you thought you could trust, stay with her for one night, you come back at 6:30 am- your Mom has fallen in her own urine and has to go to the hospital for a concussion. They never even looked in on her for at least 9 hrs.
So, I understand why people don't think anyone else can do as well. I am praying this all goes ok for Mom. Oh yeah, & the cost....over 700.00 for less than 26 hrs total. I don't work now, so for me & hubby that's a chunk for a short period of time. This agency BETTER BE REAL GOOD with her.
You were lucky to have your son, I so wish my family cared enough.

quote:

Originally posted by Moms_Buddy:
Welcome, Teri(are you really a pirate?)! You said a mouthful there! Being a caregiver is sometimes a "damned if you do and damned if you don't" proposition! I can't think of many circumstances under which I would leave Mom in the care of anyone else at this point, but there are a few... hope none of 'em ever come up!

I have an adult son & told him if he could give me a day or two every few months, I'd be OK. So he would stay w/my husband and I'd rent a room at the beach and just zone out--just me--then I'd go back renewed. I know that not everyone has such an option, but I do think that many AD caregivers are like new mothers who think no one can possibly take care of my baby/mom as well as I can and so they get sleep deprived and neglect their own well-being. I've been thru it so I well understand the challenges & costs of getting someone you can trust. But if you have the chance for a day, just a day, every few months or so, grab it for yourself. Your well-being is every bit as important as your loved one & chances are she'll be OK.

Love pirates, the idea you can get on a ship and go anywhere and do anything appeals to me.
Tonight hubby better but letting sleep come natural (no sleeping pills) I am going to give him the seroquel in the morning. Doc said ok.
that pill makes his legs weak.
love this chat room. lots of hope.

Welcome, Teri(are you really a pirate?)! You said a mouthful there! Being a caregiver is sometimes a "damned if you do and damned if you don't" proposition! I can't think of many circumstances under which I would leave Mom in the care of anyone else at this point, but there are a few... hope none of 'em ever come up!

Respite care I don't think it will ever happen.
I was so tired yesterday that I did not give hubby sleeping pills. He can walk to the bathroom during the day so I told our son to watch him and I went to bed and closed the door.
I am still tired but hubby is so upset because I wasn't with him last night. I am his 24 hour nurse, and my little sister is in the hospital and I can't fly up to see her unless I put him in the hospital. Afraid he will pass when I am gone so I can't do it.

quote:

Originally posted by Moms_Buddy:
This IS good news, but pardon my grumpy, jaded self when I say I am not gonna hold my breath for it to come to where we live anytime soon!

Same sentiments here I don't hold out much hope for major innovations or the proper allocation of monies in our area. Sad.

And you are certainly right about the quality of facilities and workers being so key. Considering the miserable effort that was made to engage my mom on her level at Adult Daycare (that is, effort not to humiliate her by expecting her to participate in such a limited choice of what she considered "childish" activities), I wonder if it is even possible to formulate a comprehensive system of respite, that would also be within the reach of everyone who needs it.

All I know is that it certainly would be nice. Maybe some state will put together a beautiful program after which we can model ours...at least by the time our children need it, indeed!

This IS good news, but pardon my grumpy, jaded self when I say I am not gonna hold my breath for it to come to where we live anytime soon!

Respite care, whether paid or not, is only as good as the facility or agency providing it and THAT'S the BIG problem - the quality of workers and facilities in one's area.

I hope they have things in place by the time my kids have to get respite from caring for ME!!