Re: respite workers

[Guest guest]

In a message dated 8/29/02 12:47:12 PM Pacific Daylight Time,

VisibleWorship@... writes:

<< what do you think? >>

Deb,

By your post, I think you answered your own questions. (gentle smile)

Dena

[Guest guest]

that's almost funny! but not, know what i mean?

i can't believe someone would do that!

that would NOT be tolerated for long by most, i would say.

give her the boot. you need help......the "help" shouldn't need you!

krystena

respite workers

Hi thereneed a little help from you guys...we have a new respite worker but she is an old friend of ours...she is even one of our kids godmothers so we have to make this work...but I am not too pleased so far as the familiarity has brought some problems with it...so, I am wonderign what kind of rules/expectations you have out of your workers...I am going to type up a thing to give to anyone who works for us in the future. How flexible ar eyou with thier schedules? How much notice before they take off? what about when they are sick?What about naps? she is asleep right now on the couch with a blanket while I type this...the kids are asleep...but still irritating.What about helping around the house? how much is too much? I haven't asked for anything yet but what is normal beyond the realm of stuff.What about eating on the job? She is the first one to eat our food...like she came in late today and told me she was going to eat lunch and then still ate lunch here. She really has the potential to be one extra mouth to feed...when she is babysitting at ngiht and it is a mealtime that doesn't bother me...but just b/c it is conveinent or snacks sinc eth ekids are eating them, seems out of line. Drinks are fine with me.She was going to live with us too but it didn't work out...can't decide if these things would have made it better or worse...she is pretty much still acting like she is living with us by eating and sleeping here and stuff but not paying any rent as she would have been before...kinda gripes me...what do you think?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Deb:

We have 12 hours each night private duty nursing in our home for our

daughter. You didn't say if your respite workers are nurses as well,

but if they are and are managed by a home health agency, from my

experience the agency has set guidelines they must follow. The agency

has told me that sleeping on the job is never tolerated, but

practically all of our night nurses do it. We've had some who sleep,

eat our food, etc. I do not tolerate this and have reported them to

the agency and they handled it. They usually council the nurse first

and if it doesn't stop they take her off our case. Your situation is

a little trickier since the worker is a personal friend. I just know

that sometimes when a nurse works with our daughter for a long period

of time...sometimes they do get " too comfortable " and cross the

lines. I've found this compromises the quality of care our daughter

gets. It's really hard when we become close friends with the nurse

and they begin doing things we don't like or take advantage of the

situation. Then it's very hard to say anything about it. I don't know

if this helps or not...just know that you're not alone with this

problem.

Melody

[Guest guest]

>How flexible ar eyou with thier schedules?

I allow then to make up their own schedule, but we have two personal care

workers so if one needs to change, they have to find out if the other worker

already has that time taken. They have a set schedule, but I allow a lot of

flexibility.

>

>How much notice before they take off?

They don't always know until the last minute, but they are great to let me

know of changes ASAP.

what about when they are sick?

Working with him sick is not allowed...for allergies, they use an isolation

mask.

>

>What about naps?

NO WAY!

>What about helping around the house?

The help to keep my son's environment clean..I don't take advantage of that.

My son doesn't go downstairs so they help out in that area.

how much is too much?

Helping out with my son's environment is not the focus so whatever is done is

never too much. He needs constant 1-1 care/help so they really can't do much

else unless if he is stable and watching TV or something he can do

independently.

>What about eating on the job?

My workers work long hours so they must eat. I always stressed to let me know

if they need a break to go out and take a smoke or bathroom, etc. They

pretty much eat when my son eats, but I've never made any rules, if you will

as they are too busy with his care anyway. I let them use the microwave, but

not the stove....they can't cook, but I don't mind reheats. They don't eat

my food and I have never offered it.

I did have one worker who came to work and sat down to eat first thing as he

was time constrained. I told him to come to work ready to work; if he needed

to come later so that he could eat first, that was fine. I don't mind meals

and breaks as needed, but when they walk in the door they need to be prepared

to start work.

Cheri

[Guest guest]

Susie O

Thank you! Your words are encouraging. The acknowledgment from a professional like yourself gives me the strength to stand my ground and pursue the best care I can for my son.

The respite house is a dream of mine, I am writing a mission statement and business plan to begin the process in changing the dream into a tangible goal. I see a long road ahead, but in the end it will be worth the journey.

Thank you again!

Barb H

[Guest guest]

We get a monthly allotment...actually all three of my kids are eligible ( for mito, Gaige for Autism, Bliss for CP) and they each get $300 which equals about 43 hours or so, per child, so we get about 120-130 hours a month...i am considering asking for more for andrew...we did get $350/mo/child but they cut us this year.

deb

[Guest guest]

>I'm just trying to figure out how do you get respite for so many hours

>a week? We get 3 hrs a week.I've talked to everyone I can think of but

>3 hrs is it !!

>

>, Mom to

You are right, respite is typically only a few hours and in our state, not

even every week if you are on the waiver program. I have suspected that

definition is different from state to state or some individuals are not

getting respite, but responded to the inquiry (as in my case).

Cheri in NC

[Guest guest]

I'm just trying to figure out how do you get respite for so many hours a week? We get 3 hrs a week.I've talked to everyone I can think of but 3 hrs is it !!

, Mom to

Re: respite workers

Hi Deb, I rarely post anything but saw yours on respite workers and felt the need to chime in. We have had respite care for over 6 years and I have to tell you that at times it has been a blessing and at other times it has been a nightmare. We work with an agency that provides skilled nursing care for our son, LPN's or RN's. Our son requires care 24/7, he is on a ventilator, continuous feeding pump, non-ambulatory among many other things. We are fortunate to have nursing 7 nights a week for 9 hours each night. I have 2 wonderful nurses that have been with us for several years, the problem arises when 1 of them is sick or goes on vacation. The agency has not been real good about having a backup person to cover in these circumstances and I end of doing the night shifts, and sometimes without a day nurse following that night. I have recently lost 2 of my day nurses, one went to work at the hospital in town for better pay and benefits, the other moved to Calif. where her family is. Finding replacements has been difficult, but I think I finally have 1 or 2 that I hope will fit. I am allowed to have 8 hours a day for 5 days a week but I never seem to get the coverage. Anyway, I have been able to work with the agency and I now interview all potential nurses before they are oriented to 's case. If I do not have a good first impression then they never come back. I have a set of questions I ask everyone and then I let them tell me about themselves. I am not saying that this interview process is full proof though, I have had several that interviewed well and have been horrible caregivers, even so far as we suspect that one was using drugs, slept the entire night and I was unable to even wake her for over a 1/2 hour. Needless to say, my son was not taken care of at all and became ill after that one night of neglect. I was very firm and direct with her to leave and never come back. I turned her in to the agency and she was fired and I believe turned into the State Nursing Board. This was an extreme case, but you have to stand up for your child, don't worry about hurt feelings, you are the only one who can advocate for your child. Your family friend should understand and if she doesn't then she is not such a good family friend after all. I have some strict rules that every nurse knows before they walk in my door. They are to be attentive and at my son's side at all times only to go away from him a short distance to prepare his medications and his feedings. They are to bring their own food and eat it as time allows, only after my son is totally taken care of. They are allowed to heat up food in the microwave and use the frig to store their daily food and they may use utensils and dishes if needed. No smoking is allowed at all. If I have requested an extended stay and a family member is available to stay with my son then I will allow a short break. Only in the event of an emergency are they allowed to make a change in 's care. All concerns are to go through his father or myself and giving them permission to proceed with any changes, calls to Drs. etc. They are here to help you, give you the breaks you need. They work for you and the relationship should be treated as such. I am sorry this is so long, but I have become very passionate about the care that my child as well as other children receive. This passion I hope will one day lead to the development of a respite house for children. There is one in Illinois called The Coach House that I hope to use as a guide in pursuing this goal. Take care, and I wish you luck in your continuing quest for quality care for your child. Barb Hagdahl Kelso, WA Mom to , 20, Leigh's Disease, e, 18, off to college and Stefany, my angel in heaven, 7-2-88 to 3-28-96. Please contact mito-owner with any problems or questions.

[Guest guest]

,

I dont know they came up with the 12 hours a week.

I wish I could share some of them with you and the others out there who just get very limited hours.

They are coming tomorrow to talk for the first time in my home so I will know more about whats going on.

I wish the best for you and yours,

Horsley

leehorsley@...

Re: respite workers

>I'm just trying to figure out how do you get respite for so many hours>a week? We get 3 hrs a week.I've talked to everyone I can think of but>3 hrs is it !! >>, Mom to You are right, respite is typically only a few hours and in our state, not even every week if you are on the waiver program. I have suspected that definition is different from state to state or some individuals are not getting respite, but responded to the inquiry (as in my case).Cheri in NCPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi,

In answer to some of your questions on respite. We are allotted a certain $$ amount on July 1 of each year that is to be used for respite which works out to about 9 hours a month. The main source of our hourly nursing care is private insurance through my husband's work. This was a struggle from the beginning to obtain coverage for this type of in home care. The insurance company is actually paying for this benefit out of contract, it is not a covered benefit outlined in the plan. The alternatives, were to try and provide the 24 hour care ourselves, place our son in an institution(which was never a consideration as far as we were concerned), or keep our son in the hospital intensive care unit. They fortunately agreed to provide up to 108 hours a week of skilled nursing care.

I read about all of you taking care of your children on your own or with just a few respite hours and I wonder how you do it. I complain sometimes and become overwhelmed if the nursing agency is unable to fill the scheduled hours during the week. Two years ago there were several traumatic incidents that occurred in my family and I eventually was unable to handle all of the responsibilities and stress. The main incidents were that my father became very ill and passed away and at the same time the nurse that cared for our son for over 2 years left to take a better paying job, became ill while I was tending to my father in the hospice center and I was also trying to work my 30 hours a week at my outside job. The nursing agency was only able to fill 1 or 2 day shifts a week if that and several of the nights during the week were also not staffed. I took an indefinite leave of absence from work as I needed to care for and that was most important. Well a similar chain of events just happened over the last month with 2 of my day nurses leaving, one for a better paying job and the other moved to Calif. Anyway, it has been difficult and I just recently took a little trip to the beach by myself (my husband is fantastic) to kind of fall apart and then regroup and recharge myself. I assure that this is not something I do on a regular basis, but I had some very strong influence advising me to step back and take care of myself or I would end up not being able to take care of anyone. It went pretty well and when I returned there were several issues that I needed to deal with, which I don't know if I would have handled them as well if I had not just had that needed break.

Sorry I have gone on like this it just continues to be a journey that has many bumps in the road and I am trying the best I can to take each day one at a time and enjoy the moments.

Thanks for listening!

Barb H.

Mom to , 20, Leigh's Disease, e (almost 19, her birthday is on 9/11) away at college and our Stefany Angel in Heaven, 7, 7-2-88 to 3-28-96.