I'm quickly breaking down and need solution for continuing care for my spouse at home. Any advice?
He is a quadriplegic.Nurs'g home would kill him soon. Personnel in hospitals and nursing facilities are woefully uninformed as to conditions and secondary conditions of quadriplegics.They resent having spouse or family informing as to needs. What we really need is about 10-12 hours of CNA or PCA services here at home. After 8 years I am not as able as I was, am now 71 and he is 76. Cannot afford this extra expense. ALTCS is always suggested but at one time we could not qualify. We are now terribly under water with our home and have all other expenses to maintain the home, which we need in order for him to be able to navigate his large power chair and to use his hospital bed, patient lift, and maintain our daily life. My husband has a small retirement income and a 401K with other assets that barely generate enough income to pay our expenses. Unless I am out of the picture, a nursing home is not an option for obvious reasons, the main one being that he would soon perish from any one or two of many secondary conditions that could end his life without proper care and concern, sanitary conditions, a rigid schedule, etc. I could easily oversee his needs and cares but must have some help here. I haven't found anyone who would consistently show up to do the work or at least stay in touch and/or arrange for a sub worker. I tried one agency but they were unethical to such a degree and made my life more chaotic, that I had to quit. They were so accustomed to lying and taking advantage of their clients and their workers that they were suspicious and unreliable. After tricks they played on thier own worker and me, (they ruined my birthday and also our Christmas) I was not able to continue to do business with them and quit. Most other agencies want minimum 4 hours and a fee per hour that I cannot afford to pay even for one visit. Many folks think we should be able to qualify for ALTCS but a firm we consulted in 2007 wanted $26,000 just to do the paperwork. That would buy a lot of diapers, and we declined.
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