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. 💗
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.
Back injuries happen. Often cumulative micro damage. Your DH may feel strong now but you won't be able to lift him when you are both retired.
I hope there are more suggestions coming. It does sound like you are doing everything else you can.
He has never had full use of his right hand because of his Cerebral Palsy, and has lost most of the function of his left hand due to Trigger Finger. He refuses surgery, and has tried the injections two years ago which did help, but he is not willing to go through that process again.
I will look into trying to see if they can qualify for an OT. There was one who would come over two years ago, around the time he started losing his ability to walk, but I think my Dad pretty much refused any help from her. He would tell her he didnt sleep well, was too tired to do anything, etc. He is fairly stubborn, and my Mom has basically given up trying to reason with him.
Thank you all for your kind words and help!
The injections for trigger finger are painful so I can't blame your Dad for not wanting to go there again.
How about his mental state? - has anyone assessed him for depression?
Second, it sounds as though the 2021 NH and Rehab worked so badly that it has put all the family against some of the things that could really help.
1) Your parents should NOT be refusing to try the Hoyer lift, or even the gait belt. Both your parents are totally dependent on your husband to move your father, although it is really a two person lift. One strain injury to your husband makes the current situation impossible. Getting the lift makes it easier all round. WHY do your parents object to it? Remember that all it takes to change this now is for your husband to decide to stop. Your father may be stubborn, but he should not be calling the shots on this.
2) Has your father had a proper assessment for pain control? It may help to cope with his night time problems. Being ‘way too loopy’ at night is not really a problem if you are asleep.
3) WHY has father not had a diabetes diagnosis? Who goes with him to medical appointments? A note in advance to the doctor may be necessary. Many stubborn people just don’t tell the truth about their problems.
4) Could you tell us what regular medical help your father is getting, besides the wound control? And what part of the health system has he given up on? There may not be ‘answers’ to all his problems, but solving some of them might still be possible.
5) If your mother is ‘so tired from the stress she deals with at work’, could it be possible for her to find a less stressful job? Perhaps a lower income job would be enough to keep the financial situation under control, and be easier to cope with.
6) Have you had an assessment for furniture? A recliner is more pleasant if it can be moved around easily, with views out the window for example. I guess that your parents have separate beds, because of his knee issues, but that might be worth looking at as well.
Best wishes, and I’m hoping that more information can provide you with more ideas. Love, Margaret
What does your husband think about having to go over and physically lift his FIL twice a day because your parents don’t want to have a Hoyer? What does this mean in terms of ever getting away for a weekend, etc.?
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 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.
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.
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 CNA would come in a few times a week to bathe and change bedding if needed and order supplies but they are not there much longer than what it takes them to do their job.
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.
While one would think he might have been worked up for Diabetes during his hospital/rehab stays it is not unusual for this to happen. In fact it’s more likely in rehab than the hospital if they have a Hospitalist that’s on the ball and isn’t too over worked. In the hospital they tend to focus only on diagnosing and treating the problem a patient comes in with and not working up things that wouldn’t be a direct cause, I imagine with COVID this has become more prevalent. Your instincts are probably good and you should never hesitate to be somewhat persistent about sharing them with his providers and insisting on an A1C in this case unless they can provide a really good reason not to do one. It’s a simple test. In fact I would encourage you to be proactive with any questions you have going forward about his health and care until you feel satisfied with the answers, a good provider these days counts on their patient and those who care for them to help them care for their patients, they don’t live with or come in contact with patients on a regular basis and we all do some show timing when we go to the doctor don’t we?😉
First problem I see is to find out if he has diabetes. You can start checking that from home with a glucometer that can be purchased from any drug store or Walmart. Find out what his sugar levels are running. Or he will have to have blood work done at a drs office to see what his A1C levels have been - he has to be fasting to do the blood test, so make his dr appt early in the morning if he's a breakfast eater.
A dr's visit really is in order for wounds to be looked at (getting wound care orders) or if wounds look serious enough, a trip to the hospital for treatment and then request a release to rehab or nursing home. Much easier to get into rehab by going from a hospital upon release. He may not qualify for Medicaid bed in a nursing home at first, but the application process needs to be started while in the hospital to determine if he qualifies with income/bank accts as they are right now or if he would have to 'spend down' some of his share of bank accts to qualify, or if overage of his income could go into a trust to help him qualify for a medicaid bed. An elder atty could quickly tell you what he would be eligible for, about his spend down, and creating trusts...and could help you through the application process. They know how the system works.
Dad may have to have the conversation with you/wife: To continue wound care at home and that he has to do the therapies to build strength every day, not just when the therapists show up. If his plan is to just sit around all day and continue to lose strength, he will be making a decision to require the need of nursing home whether or not he wants to go. Even if feet have wounds, he can exercise arms and legs from the chair to get himself stronger. The situation is just not safe anymore: If he has to go to the bathroom and no one home, is he trying to hobble to the bathroom??? Serious fall risk.
Your situation is common. A little (or a lot) of money that puts someone over the income limit for certain programs and NH care, yet not enough money to pay in home health care to get more attendants to help him. If he was military, you might ck with VA to see if he qualifies for home services - lots of paperwork, but worth it if you qualify. Some family members are willing to step in to help out during the day - more common on this forum that others don't help. What bills is mom trying to pay with her extra income??? Is it something you could pay so she would be at home? Perhaps if dad went to NH with therapy ordered, could mom get job there so he would get his needs met while she earns a living?
Antibiotics likely would stop with hospice...or just enough to try to keep infection under some control. It is chronic, never will heal, at this point. Hospice knows how to use particular meds in very small amounts for comfort, and being groggy in the daytime due to not sleeping at night is a cycle that he is stuck in.
Doesn't sound like he is going to change his mind about anything. Might be a good idea for a discussion with a hospice program about what they provide, and what ways they might help Dad be comfortable. Ask about palliative care, too. Quality of days, not number of days. Get information and talk about it with your husband and your mother, and if there is interest to find out more, then arrange for an outreach nurse or SW to visit your dad.
You can disenroll from hospice at any time, and sometimes knowing that lets a patient and family agree to 'try it out'. Often there is a realization of how the shift in focus and the help provided, it turns out to be a good choice.
Otherwise I think. he may end up back in the ER again, and the hospital, and the SNF...whether he wants it or not.
It's a hard situation for all of you.
Take good care.
You mentioned that he may have (undiagnosed) Type 2 diabetes. One thing would be to see if you can have that checked. In the meantime, maybe take an inventory of how much sugar he is eating/drinking. The sugar could be a deterrent to his wounds healing.
Another idea is to learn what the wound care nurses are doing and if it's not working, then perhaps a change of treatment is in order.
Maybe you can push for more physical therapy. The physical therapist walking away is really inexcusable. A good physical therapist should be able to work with him in a chair. Also they could easily massage and manipulate his frozen leg and tight muscles. Sometimes it takes someone other than family to get the patient to cooperate and exercise.
You sound like a loving daughter with a kind husband and a loving mother. Blessings and (((hugs))).
Here in Texas, we have the worst nursing home care of all 50 states. We are # 50 in care.
you are right; there are no good answers from anyone. Believe me, I feel your pain & I am trying to figure out what to do right now as I write this!
His vascular doctor at the skilled nursing place said he has very little blood flow to his left foot & leg below the knee. He has a black big toe & black heel & has had them over 6 months now from a rehab facility he was in. He has gangrene. Dr did artherectomy in a tiny blood vessel that was only 10% blocked. He has 2 major arteries that are 100% blocked keeping blood & oxygen from getting to his left leg & foot. She told me he needs a bypass done but didn’t do it. Now he’s being discharged to home & im afraid he will lose his foot or leg.
https://www.dibbern.com/continuing-care-communities/ohio-continuing-care-retirement-communities.htm
Perhaps an intervention can be set up with family, geriatric doctor and social worker (and anyone else who really cares and will be honest).