Becoming a caregiver is not what Mary Reiner had in mind for her life, but looking back she realizes she was prepared years ago for the role she's in now.
Reiner gave birth to a daughter with Down syndrome when she was 27. She says raising her daughter has been an ongoing struggle to find therapy, agencies and schools. That experience taught her a lot about Medicare, Social Security and different programs that could assist. In 2008, that knowledge came in handy when her husband was diagnosed with progressive supranuclear palsy.
"It's a rare degenerative neurological disease that destroys brain cells, particularly in your skin," Reiner said. "It affects movement like walking, talking, swallowing and seeing. It destroys the nerves that control the eye muscles. It's progressive."
Reiner's husband, Jim, can no longer walk on his own. He cannot get to the rest room on his own or dress or bathe himself. It's all things Reiner has to do for him. She wakes up early and gets him out of bed and dresses him. Then it's off to work at 6:30 a.m. Throughout the day YOPAS (Outreach Program for Ahwatukee Seniors), Hospice of the Valley and a local group called The Neighbor Ladies, comes over to check on Jim every couple hours.
When Reiner comes home around 3 p.m. she makes dinner and takes care of Jim's personal needs. At bed time she gets him ready for bed and gets him into bed. She may wake up during the night if he needs to use the rest room. It's total care and she is always on duty.
"We always wanted to travel," Reiner said. "Now I'd just like to go on a walk with my husband. You lose a lot of things. You lose intimacy because you're so busy taking care of them. It's a whole different thing. It's total care. When you have to dress and bathe and get someone to the washroom, it's not really a marriage anymore."
Reiner takes comfort in her friends and her daughters, who help wherever they can. She's just grateful that she's able to take care of her husband and that he's sweet enough to allow her.
"My husband never complains," Reiner said. "He never has since the day he was diagnosed. If he doesn't complain what do I have to complain about? I'm able to do all these things that he has had to give up. I don't feel like I have anything to complain about."
Reiner is not alone as a caregiver, especially not in Ahwatukee. That's why The Neighbor Ladies was created. It's a non-medical in-home care company. The group comes into homes and takes care of those who are in need. They are CPR certified, bonded and insured. They provide companionship, meal preparation, transportation and errands, light housekeeping, family respite, grooming, rehabilitation, mental challenges, physical challenges and end-of-life care.
"It's kind of like a secret society but it's going on in homes everywhere," said Valerie Sanders, owner of The Neighbor Ladies. "We do what we can and we love it. We meet the nicest people because these people just really want to keep the family together."
The Neighbor Ladies is hosting a free seminar from 7 to 9 p.m. on Thursday, July 14 in the community room of the Ahwatukee Health Center and Urgent Care, 4545 E. Chandler Blvd. The group will have many different organizations there to answer questions for caregivers, everything from Social Security and legal questions to Hospice of the Valley care. For more information on the seminar and to R.S.V.P., call (480) 577-6933.
Reiner says the best advice she could give to anyone who is just becoming a caregiver is to live in the now and have a sense of humor.
"I don't go down the road to the future," Reiner said. "I do what I have to do today. I don't expend negative energy in something I cannot control. You just can't. But every night when we lay down to go to bed he tells me he loves me and he's grateful for what I do. That's what it's all about."
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