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Care Givers

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    I read an article about how spouses can get Caregiver Pay. It's about Workers Compensation according to this article in the LA times 6/22/03. It's titled "Pay for Family Caregivers a Workers' Comp Secret". It's says that Workers Compensation vary from state to state payment for attendant care is available nationwide. It's not clear if it only pays for a spouse\family member quits a job to care for the disabled person. According to this article, the pay can be retroactive.

    I am the main caregiver, but have help 4 hours a day 4 days a week. My husband is suppose to do just about everything for himself. The therapist tell me not to baby him. He was C4/C6 injury about 16 months ago. I was told he would be a quad forever. Not true, he started walking with walker in December and now they are going to work on balance and walk with crutches. He taking driving lessons at the VA and can drive a regular car with NO adaptive equipment. His reflex's are that good. Biggest buggabo is the outside condom coming off and bowel care, pins and needles in lower arms and numbness in left leg. Going for mylogram on Tuesday to find out why? He can stand about a minute without hanging on to anything. Still has spasms at night so the whole bed shakes. he thinks he will be dancing in 6 months. If he had not had the intense therapy at the VA and just great therapist, this would never have happened. They have given him incentive to get better.


      No PCA now - she is having baby anyday

      Will try to do without Caregiver for a few weeks if don't run myself ragged. Husband will need to change his condom with setup and do bowel care with some help. He can dress himself, if I lay his clothes out. He's bumbed right now as they have told him at the VA that his progress has pretty much stopped. Working on him walking with short crutches and balance. I would like to have him as independent as possible, so I can take 2 day vacations without putting him in respite care at the VA or a caregiver at home. Still don't know if I will get the respite care at the VA in a couple of weeks. They will not make any promises, because of nurse shortage.

      So far I have only had one really bad caregiver and she was when I had insurance.


        Caregiver Stats

        I have been put in touch with our Orange County Caregiver Resource Center located in Fullerton, CA. They have support meeting all over the county. They have informed me that 66% of main caregivers, spouses, family members, die before the disabled person.

        Have any of you heard that stat?


          I live in southern California and I am currently looking for a caregiver. I am seriously thinking about putting an ad in the newspaper this week and I hope I will get someone good. I can also handle having a "live-in" caregiver since I have an extra bedroom. If anyone knows someone in the southern California area or someone who would like to be here, please feel free to email me.


          The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
          --General George Patton

          Complex problems need to be solved collectively.
          ––Paul Nussbaum


            We have not found the newspaper ads worth the high expense. Try the PennySaver instead. I would also post flyers in the following places, mostly looking for aides who want some work on the side:

            Local Rehabilitation Centers (Long Beach VA SCI Center, Long Beach Memorial, St. Mary's, etc.)

            Local Nursing Homes (if they won't let you post flyers, check out staff leaving and walking out to the parking lot at change of shift, give them a flyer and ask them to let their friends know you are hiring).

            Local schools of nursing (El Camino, Long Beach State, Dominguez Hills, etc.)

            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


              I hope I'm doing this right. My son's name is David he is 22 yrs. He was hit by a drunk driver on Aug 15, 2002. He was 20 yrs then. He is married, but they are filing for a divorce. They have a little girl Julianna 21/2 yrs, my granddaughter. David is a c4/c5 incomplete. David will be living with me and by husband after the 1st of the year. We are building on to our house, a room for him. My husband and myself will be his caregivers. I'm looking forward to him coming, but I'm very nervous about it, I want him to feel comfortable with us, with bathing and bowel program. Any suggestions y'all have would be great. Thank you

              Pam Baureis
              Pam Baureis


                Hi, Pam, and welcome--

                Sorry you had to find us, but very glad you did.

                Probably Marmalady will move your post to a new topic, but in the meantime . . . how soon is your son moving into your house? Has he been using a paid caregiver until now? Do you know what sort of help he'll need?


                  if this question is not too intrusive~~what is the main problem/challenge you face as the caregiver who is also the spouse?
                  "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre


                    Originally posted by Marie2:

                    if this question is not too intrusive~~what is the main problem/challenge you face as the caregiver who is also the spouse?
                    I am a spouse/caregiver. I think the main probslems I encounter are taking time for myself and not getting snippy with my DH. There are days I get very frustrated with the whole situation. He was mostly independent until the past six years. I feel guilty when I take time for myself even though I know I need to do this to be a better caregiver. I get snippy with him when he doesn't do what he knows he needs to do so his sores will heal.


                      quiltcrazy, where are you from in CO? I often meet with other injured folks to get to know their situation and what can be done to possibly help. Or just listen.

                      I live in Littleton. If you'd like you can post a private topic.

                      Good luck, peace.


                        I know what you mean quiltcrazy~one time my husband fell out of bed and broke his leg, actually both bones in his leg. It happened on a friday night. i knew it was broke, it was all swollen and red with a rash and he had a fever. he refused to go to the doc, being a weekend and all so he stayed in bed over the weekend but went to classes on monday. we were in school at the time and taking a full load. i kept bugging him because i feel like i am responsible for everything, not his fault[img]/forum/images/smilies/smile.gif[/img] but still, people tend to forget you are married to an adult with a functioning (better than mine) brain. finally he went to the va on wednesday, a whole freakin' five days later and yup it was badly broke. needed surgery which he declined as did the docs cause he isn't going to use the leg anyway right?! I still think the docs looked at me funny like i should have done something. I don't know if it is an sci thing or a man thing! He dropped one class and kept the other two. its frustrating sometimes because i always feel like we are living on the edge of a disaster. Illness takes on a different tone or maybe i am not making sense i dont know. i guess i am saying it is hard sometimes to keep the boundaries clear, what is a spouse thing and what is a caregiver thing. and the not being snippy thing~~i try but [img]/forum/images/smilies/wink.gif[/img]he understands so that is a plus!

                        "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

                        [This message was edited by Marie2 on 01-23-04 at 12:25 PM.]
                        "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre


                          Great topic Redneck & something I've been thinking a lot about lately. I'm a post 26 year C4/5 quad with very limited use of right arm (barely enough to drive my power chair) For all but about 4 years in the late 80's my parents (particularly my mother) has been my caregiver. I fortunately also have great friends who assist with lifting a few times a week to give my Dad a break as I do transfers with a two man lift. Now that my parents are getting older it's more difficult for them and I need to find alternatives (Something I probably should've done long time ago as looking back I feel bad for all they have given up for me).

                          Question for anyone/everyone: How does one afford PCA's? I've been out of work since Mar. 2001 and am just on disability. I do have some savings and don't mind using some of it, but how does one get the assistance they need without getting wiped out financially. I am currently on Medicare & don't qualify for Medicaid. Any input would be greatly appreciated!

                          Yard by Yard, Life is Hard---
                          Inch by Inch, It's a Cinch!