It is great to have paid caregiving support by the state if you are low income, but for people just making ends meet that have a little savings and the spouse works, there are no "PAID" services and so I spend half of my paycheck on caregivers and the other half just living in Phoenix because we cannot move home and get medical services. Family and friends as you know stop coming around unless they are paid; at least that is our experience.
From: Joan Anglin [mailto:[email protected]] Sent: Friday, May 19, 2017 9:51 AM To: 'Dave Krehbiel'; [email protected]; [email protected] Subject: RE: [QUAD-L] Who cares for the family caregivers? Dave I totally agree with the strain that it puts on families. Going on 27 years, my youngest daughter was only 15, and it has been a roller-coaster ride over the years. She learned how to take care of me while I was still in rehab, and although she wasn't my attendant until later my PCA's would expect her to take over if they couldn't make it. It was very difficult to keep a mother daughter relationship, when the mother needs the help and the daughter feels obligated to step in and help no matter what she had planned. She has been my attendant for the last nine years four days a week, and I've tried to make sure that she's doing this willingly and not under any sense of obligation. But it is difficult. For example, my night time attendant is going to be off for 2 to 3 months for medical reasons. She just assumed that my daughter would step in and take over those 5 days. I had to explain that my daughter would of course be available for an emergency, but for the most part her days off and evenings were untouchable. It has taken up a lot of talking and walking in each other's footsteps for my daughter and I too have a great relationship, mother/daughter and client/attendant being balanced. I was a caregiver for my mother for three years before I broke my neck, and that gave me the different perspective to help me prepare for being the "needy" person. One of the little things that has helped us is the phrase "I would like you" vs. "I need you" to allow my daughter, my older daughter, and my daughter in law to say no without any guilt feelings when I say "I would like you". I try not to use "I need you" unless I have no other options. Each state is so different in what they are willing to provide in caregiving-and even among agencies. The program I have allows me 5 hours per day of direct care only. They are not allowed to take me grocery shopping, start dinner for the family, clean my house-except for my direct living quarters-, take me to doctors etc.. Other programs will provide housecleaning, cooking, taking you out if you have $25.00 an hour to spare. So all of the rest of the things fall upon my family and friends. Luckily Reno has a great accessible bus system that can take me shopping, to doctors, or to visit friends. So I am able to utilize that for some things. Just as I feel my daughter is my angel, so too is your wife and we are beyond blessed to have them in our lives. Good luck. Are you a member of the spinal cord peer support? They have a lot of people on there who are caregivers for family, and I do think they have a special caregiver for SCI facebook. Getting excited about warm weather, from 43°for a high last Friday to 79°next Monday! I will take it. LOL From: Dave Krehbiel [mailto:[email protected]] Sent: 19 May, 2017 6:35 AM To: [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]> Subject: RE: [QUAD-L] Who cares for the family caregivers? My wife works full-time. We have caregivers to provide activities of daily living, and since she has good insurance through the state of Maryland, I've been able to see a variety of doctors and nurses and so forth. But she has been taking care of me at the expense of taking care of herself. And she spends time nearly every day fighting with insurance companies and various service providers while at work. The daily battles are taking their toll. It seems to me that being a family caregiver can be very socially isolating. Someone on this forum said, the majority of people they are friends with now are people they met after the accident. The two of us can't go to many social events (e.g. a 30th wedding anniversary party for good friends) because most homes are not wheelchair accessible. Most social events have to be here, and that needs cleaning up before, cooking, shopping, hosting, and cleaning up afterwards. Regarding maid service, I think that could be very helpful, especially around the holidays. From: [email protected]<mailto:[email protected]> [mailto:[email protected]] Sent: Friday, May 19, 2017 9:18 AM To: [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]> Subject: Re: [QUAD-L] Who cares for the family caregivers? Dave, your wife is an angel. Have you checked out your local Independent Living Center (ILC) Do you qualify for home health or maid service in your area? Best Wishes In a message dated 5/19/2017 7:51:26 A.M. Central Daylight Time, [email protected]<mailto:[email protected]> writes: I have been a quadriplegic for nearly 10 years now, and as a consequence, my wife has taken on the role of being a family caregiver for almost 10 years. She needs help. I have some ideas about setting up an organization to help support family caregivers, and right now I am doing some research. Are you aware of any helpful programs or resources or information or organization supporting family caregivers? Thanks so much, and take care, Dave Krehbiel Olney, MD [https://www.avast.com/sig-email?utm_medium=email&utm_source=link&utm_campaign=sig-email&utm_content=emailclient&utm_term=icon]<https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.avast.com%2Fsig-email%3Futm_medium%3Demail%26utm_source%3Dlink%26utm_campaign%3Dsig-email%26utm_content%3Demailclient%26utm_term%3Dicon&data=02%7C01%7CGailO%40Pennwell.com%7Cab4fc4a3113e40369e1808d49ed752ce%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636308095024662186&sdata=IgTAv%2Bz23MLtufhMwlA3uzPkzJ5BfjUF%2FG0apL84dJ0%3D&reserved=0> Virus-free. www.avast.com<https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.avast.com%2Fsig-email%3Futm_medium%3Demail%26utm_source%3Dlink%26utm_campaign%3Dsig-email%26utm_content%3Demailclient%26utm_term%3Dlink&data=02%7C01%7CGailO%40Pennwell.com%7Cab4fc4a3113e40369e1808d49ed752ce%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636308095024662186&sdata=4EtwJ5JQBRKaRfo4%2BwN4fr21%2FMTBumwAKO1ugx6h4LM%3D&reserved=0>
