Caregivers Support Group
A voluntary caregiver is a spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. The challenges of a caregiver are unique and sometimes it's hard to find people to talk to who know what you're going through. Join the conversation and find others who...
After countless times going to the, what the medical profession called rehab centers, and finding my 18yr old severely brain injured daughter lying motionless in her own urine and feces, and finding bed sores all over her, I removed her from the hell and brought her home. The wife and I had no idea how to be caregivers but this was our daughter. We would teach ourselves. She could not move herself, and was still severely contracted. She could only communicate thru hand signals. She had no idea when she had to use the restroom so we had to put diapers on her. I took a leave of absense from work to be with her full time until we could get her insurance to give us a caregiver. However, as most of you know, these caregivers are there only minimal hrs, and go home. You are the 24/7, no holidays caregiver. AND.the only caregiver who really cares.
You know its strange. At first, family and friends were always around to help. Then, slowly, everyone started to shy away. My friends started showing up less and less, until they just quit coming around altogether. Guess I cant blame them, I could never go do things with them anyway. Our social life dwindled down to nothing. Hell, the phone calls to see how everthing was going even stopped.
You never realize how much a person needs for daily living until you do all of it for them. My morning started with changing my 18yr old daughters diaper. Then give her a bed bath, or pick her up and carry her to the shower, hold her in the seat and shower her. Then we get her in her wheelchair and connect all the straps to try and hold her straight. Then feed her breakfast and try not to make too big a mess. She had trouble holding food in her mouth. After breakfast I would try doing some range of motion with her. Then we would watch a little tv. We always had a cloth with us because she would drool pretty bad. Thru out the day, when I was there, I would work with her on cognitive therapies also. At night, I would set my clock for every two hours to go turn her. Sometimes I would have to change her 2 or three times a night. Other times, there was such a mess I would have to get her into the shower.
Note: doctors here in az. claimed she had leveled out and would no longer authorize therapies. Fighting with the healthcare system, doctors, insurance companies, disability agencies, social security people, and lawyers were an every day occurrence.
This was our life for the next 3 years until we were blessed with an attourney who found a facility in austin texas.
My daughter now lives in an assisted living home. However, i will always be her caregiver
You know its strange. At first, family and friends were always around to help. Then, slowly, everyone started to shy away. My friends started showing up less and less, until they just quit coming around altogether. Guess I cant blame them, I could never go do things with them anyway. Our social life dwindled down to nothing. Hell, the phone calls to see how everthing was going even stopped.
You never realize how much a person needs for daily living until you do all of it for them. My morning started with changing my 18yr old daughters diaper. Then give her a bed bath, or pick her up and carry her to the shower, hold her in the seat and shower her. Then we get her in her wheelchair and connect all the straps to try and hold her straight. Then feed her breakfast and try not to make too big a mess. She had trouble holding food in her mouth. After breakfast I would try doing some range of motion with her. Then we would watch a little tv. We always had a cloth with us because she would drool pretty bad. Thru out the day, when I was there, I would work with her on cognitive therapies also. At night, I would set my clock for every two hours to go turn her. Sometimes I would have to change her 2 or three times a night. Other times, there was such a mess I would have to get her into the shower.
Note: doctors here in az. claimed she had leveled out and would no longer authorize therapies. Fighting with the healthcare system, doctors, insurance companies, disability agencies, social security people, and lawyers were an every day occurrence.
This was our life for the next 3 years until we were blessed with an attourney who found a facility in austin texas.
My daughter now lives in an assisted living home. However, i will always be her caregiver
deleted_user
I am so sorry to hear about the challenges you and your wife have with your daughter. I admire your strength and determination! You are an inspiration.
deleted_user
I can certainly relate--especially to the part about the friends. My husband had a stroke a year ago today. At first everyone was very sympathetic and it was always "whatever I can do to help, just let me know --anything". Then they gradually disappear and you don't hear from them anymore. Especially since he's been home and I've been the caregiver. I'll say, however, my 21 year old son's friends have been a lot better than mine. It's been very hurtful. And the healthcare system in this country is beyond a nightmare. But it sounds as if your life is coming together and getting a little easier. Hang in there, you've had so much to deal with.
deleted_user
oh goodness, you have been through such a lot - I am so glad for you that you have found a good assisted living home now, where it means you and your wife can have a bit of a break. You are inspiring indeed - saw CrisH's post about the young people being more helpful than her friends - I find that, with my mother - though I dont care for her 24/7, but these are the ones that truly seem to love to help her out with this and that. Take care and I wish all the best for you both and your daughter...Cathrynn X
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