This letter is reprinted with permission from the Greater Wisconsin Agency on Aging Resources, Inc. (GWAAR).
If you had asked me two years ago if I ever thought I would need a grant, I would have laughed. My husband Chuck and I retired early with great medical insurance – a Cadillac policy. We are not rich, but solid middle class. Chuck suffered a traumatic brain injury due to a freak accident. I was told repeatedly he would probably not live and if he did, he would most likely be a vegetable. But God had other plans.
Five months after the accident, I was able to bring Chuck home. I fought hard to bring him home. He was in ICU for about 40 days, a Long Term Acute Care (LTAC) facility for another 40 more before being transferred to a horrible nursing home. The move occurred during Covid, and with a tracheotomy only a very few facilities would take him.
At about the 40-day mark in the nursing home, I was able to schedule Chuck for surgery to have his skull bone replaced. At the hospital, I worked with the neurosurgeon, the physical therapy staff, and the hospital rehabilitation floor to get Chuck admitted into the in-hospital rehab program. Chuck was there for another eight weeks. At that point I brought Chuck home. Up until this point almost everything was covered by Medicare and our insurance.
Chuck at that point was still being 75% tube fed, talked less than 5 words a week, could not do any activities of daily living (dressing, feeding, drinking, bathing) on his own. He was and is still incontinent. After a year and half at home, he still cannot be left home alone, needs help with all activities of daily living. However, he is improving a little every day. It’s just very slow. He is talking more, has learned to sit up alone, can walk in a tall walker but cannot stand up on his own. But we are working on it.
I am his primary caregiver. There is no other family to help.
While we have great medical insurance it does not pay for caregiving help. It does not pay for the special food, incontinence briefs, extra cleaning supplies, and handicap van we needed to purchase. We pay for a caregiver to come in out of our own resources. We originally started hiring a caregiver for 20 hours a week but have now reduced it to 7 hours a week due to cost, Chuck’s improvement, and hopefully my improvement in caregiving skills. I am with Chuck the other 161 hours a week. Yes, we do have friends who can sit with Chuck for an hour here, and there but only caregiver and I can toilet Chuck, bathe him and feed him.
This grant [National Family Caregiver Support Program Grant] helped me, the primary caregiver have a few precious moments to myself to recharge. It provided relief to an already tight budget stretched thin with additional supply costs.
If Chuck and I, a solid middle class family find ourselves stretched thin, I cannot imagine what other families are having to sacrifice to care for loved ones. This grant, and others funded specifically for caregivers, are much needed, and we are very grateful.
