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. 💗
Not only is there a VERY real risk of the person being moved of getting hurt but the person or persons doing the lifting are at great risk of getting injured. What happens then? Who will care for your husband while he recovers from a back injury that may well effect him the rest of his life.
I think your parents refusal to use equipment that is designed to make caregiving easier and safer for all involved is irresponsible. (sorry if that sounds harsh....)
I also think Hospice is a great option. There would be a Nurse that would see him weekly as well as Wound specialists that would also be there. A CNA that would help bathe and dress him on the days that they would be there. Equipment, yes a Hoyer Lift would be provided as well and any medications that would be needed would be delivered. Hospice does not mean 6 months or fewer, it means that there is no cure for the condition that qualifies them and that no further treatment is being sought. (My Husband was on Hospice for almost 3 years, as long as there is a documented decline Hospice can continue to recertify the person)
I would also think about what impact his care will have on your entire family. From your post, it sounds like he is needing an increasing level of care and can do very little, even feed himself. You have a young child who will also need more time and the impact is already taking an impact on your mother. Your Dad could need care for a decade or more so you need to consider what is best for everyone as full-time care with a young child is incredibly difficult.
This.
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?
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 are the reason's your parent's have against using a Hoyer lift?
Are you for or against it?
I know you want the best for your Dad, to meet his wishes - but common sense & reality checks are needed. For all his health needs.
Otherwise you may be left with trying to find magical solutions.
It is strange that they never checked for diabetes, but then again nothing surprises me too much after dealing with my mom's health issues. If his wounds aren't healing, it seems that would be one of the first things they would check for. (In fact, a complete blood work up may show abnormalities that would answer the questions of why he can't stay awake - anemia, thyroid issues, etc.) Perhaps his PCP can order some blood tests - there are mobile labs that could send somebody to your house to draw the blood; my mom had it done.
I feel bad for you and your family. It seems as though all of you are going above & beyond to care for your dad and he is not making it easy for you. I hope he changes his mind on some of the things he is refusing so that you & your family can be of more help to him. You can only do so much when somebody refuses to take advantage of the things available to them.
I wish you the best.
The issue will be cost. Your father has multiple issues and it might be very difficult to find a single source of help to manage all of his issues. Does he have a primary care physician (PCP)? If not, he ought to find one so that someone can map out a plan for his health. Affordable is a very subjective word. What you might consider affordable, may not be what someone else considers affordable. Do you have any medical universities near you?
About your Mom....is she working because it is stress relief or is she working because of the money needed for daily living or is she working for health insurance coverage? I'm concerned because she is your Dad's primary caregiver and she could actually be working herself into an early grave and that would not be good for him, her or you. If she were to stop working, would they qualify for Medicaid? I do not suggest she stop working if she truly likes her job; a job can be good mental therapy.
Would your Mom and Dad consider moving to another city or state? With the number of multiple issues that your Dad has, he really needs multiple medical professionals who will communicate with each other, oversee his health issues and guide him through his various issues. Here in the west, Kaiser Permanente is one of the most well-known HMOs and they really do work well for situations like this.
The fact that your Dad is sleeping a lot, could be signs that his body is fighting a lot of infections and potentially starting to shut down on its own. The fact that he is on antibiotic after antibiotic further tells me that his health is fragile. At some point, the antibiotics might not be effective any longer and maybe that is where you are now. The other issue could be that the medications that he is taking, could be compromising his health.
The first thing I would do is get a good primary care physician and have a frank and open discussion and a plan for his health. There will be compromises along the way, however, your Dad, your Mom and you (and all the other concerned people) need to know what they are so that you can be better prepared for the future.
I wish you wisdom and strength as you work though these issues. Good luck and many blessings.
Also, most facilities were severely understaffed during the worst of Covid, and the worst facilities went from poor to unbearable. Perhaps you can find a better facility in your area, especially now that the staffing shortages are slowly getting better?
And it might be worth consulting with an elder care attorney to explore if there are planning options available in your state in order to financially qualify for Medicaid.
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