My 79 year old Dad, who was born with Cerebral Palsy resulting in limited usage of his right leg and right hand, has for the past several years, been in severe decline. He started to lose his ability to walk around December of 2020, and in January of 2021, got diagnosed with COVID and can no longer walk. He has wounds on his feet which prevent him from regaining his strength to start attempting to walk again. He has, what I suspect, undiagnosed Diabetes II, which is further preventing his wounds to heal. He has neuropathy and open wounds on his feet for over a little over a year now, despite going to the wound clinic and getting visits from wound nurses 3x a week.
He is a two-person assist, but my husband is strong enough to lift him from his bed into his wheelchair, and from his wheelchair into his recliner every morning before he goes to work, and then back into bed every night.
He was in rehab centers/nursing homes for the majority of 2021 which was an absolute nightmare for him. The places he stayed were severely understaffed, neglectful, and generally not meeting his needs.
My Dad, understandably, does not want to be placed back into a nursing home, so he is staying home. My Mom works full time due to financial reasons. She is 70 years old, and I can tell this is taking a toll on her. Of course she loves my Dad, but she is so tired from the stress she deals with at work. She is doing her absolute best for him, and I know he is in no danger of being neglected by her, but I still worry about her mental health.
I am a stay-at-home-mom to my 3.5 year old daughter, so I am able to come over 5 days a week while my Mom works to watch my Dad and give him lunch, water, snacks, etc. He is losing his ability to use his hands so even eating and drinking is becoming difficult for him.
They do not qualify for Medicaid. They currently have Medicare, so they cannot get an in-home aide to help. He just sits in his recliner from 7am-9pm, which I feel terrible about. He mainly just sleeps for most of the day because he does not sleep well during the night due to pain (He has neuropathy, his left leg will not straighten; it's bent at almost a 90 degree angle constantly because of tightened ligaments in the knee), and anything stronger than Aleve (Tramadol, Gabapentin, etc) makes him way too loopy.
I just dont know what to do. I feel like the system is failing him. I almost feel like I am failing him at times because I can't seem to motivate him to stay awake and do some basic exercises to prevent his muscles from further atrophy. He just mainly wants to sleep. PT has given up on him because they can't help him walk until his wounds heal. He is not allowed to put any significant pressure on his feet.
We live in Ohio, is there any affordable option that we can look into that could possibly help us? The wound nurses are okay, but it seems like they just don't do enough. He gets infections and needs to be placed on antibiotics every other month.
Just wondering what we should do, because no one in the healthcare system seems to have any answers. Nursing homes/rehab centers are not an option, my Dad would sooner die than be placed in one of those again, and I don't blame him. He was so out of it and aged 10 years in 3 months after being placed there.
If you actually read my entire post, thank you, and I hope things for you are going well. 💗
Obviously there are a lot of other issues here but at least obtaining (ours was ordered by my dad’s doctor and is rented from a medical equipment company) and being trained by OT on how to use a Hoyer could make one aspect of his care much less onerous right now.
What other investigations have been done? It's concerning that you say he's also losing the use of his hands. If no one is investigating this perhaps you and your mother should do some stamping and shouting until they do - there are other causes of neuropathy and you need to know what you're dealing with.
I don't care how strong your husband is, he should still not be lifting your father into bed. Can you get someone to send an Occupational Therapist to his home to do an assessment? There is all kinds of mobility equipment which will make it possible for even a 70 year old lady to help a person move safely.
We usually suggest the Area Agency on Aging as a good first step in finding support, advice and resources, have you tried them?