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Uncertainty suggests a move

August 12, 2013
by Kathleen Mears
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A couple of years ago, I began posting on a disability website. Todd (pseudonym) and I began an email conversation. He wanted to communicate with another person with a disability. He said that he had polio as a child, which left him disabled. He also said his wife has cerebral palsy, which has left her severely disabled. Even though she has caregivers through a Medicaid waiver from the state of Connecticut, Todd also needs to assist with her care.

Todd said life at home was more difficult because of his wife’s care needs and his worsening disability. He wanted to start a website where people with disabilities, nursing home residents and hospital patients could communicate and get emotional support. We emailed back and forth about it for months, going over many ideas.

Several months later a fledgling website was set up. Todd asked me to write a piece for it. But when I had difficulty getting on the website, I stopped visiting it and no one from the website answered my emails. After that I heard no more from Todd.

Recently, Todd emailed saying that he is significantly weaker, which makes it extremely difficult for him to care for his wife. His emailing is limited because his breathing is labored and much and using his "voice to text" software wears him out.

He and his wife have a terrible time keeping waiver caregivers coming to their home. Todd spends most of his time calling to see if a caregiver is coming or rescheduling if a caregiver calls off. When caregivers call off or when the weather is bad Todd’s wife has panic attacks.

He does not think they can go through another winter in their home. They are too fearful of being snowed in and/or losing power. He feels that the time has come for them to move to a nursing home.

They need the safety and security a facility can provide. Although Todd can probably check on his wife if they moved to nursing home, he is concerned about the amount of care she needs. He is afraid she will feel isolated in a facility and wonders how she will adjust.

I told Todd I hope they are able to find a nursing home that will meet their needs. Maybe when some of their stressors are gone, each of them can take a deep breath and relax.

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Kathleen Mears

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Kathleen Mears has been a nursing home resident in Ohio for 20 years. She is an incomplete...