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My dad has CHF (congestive heart failure), weighs 330ish, has limited ability to walk and incontinence issues (both types). He was in the hospital in March with CHF, had a new stent and 2 repaired. Just returned home June 22nd from rehab. He was doing well in rehab. At home though, he doesn't move a lot (a little pain totally stops him), won't really do his PT (once a week isn't going to cut it), and eats poorly (though diet choices are never why any of the incontinence). He has urinary and bowel issues (I always wear shoes and never use his bathroom). Cannot always get himself clean (though my sister says he can). He uses a wheelchair to get around within the house. He will go through a 64 oz. bottle of apple juice in a day and thinks White Castle burgers (frozen) are great. He is not a very happy person. Because he is not moving enough or properly, he is getting bedsores (on the lower buttocks and behind the scrotum. They are down through several layers of skin. They are not always clean. He has a power lift recliner, but often slides off it rather than stand (even when he's dirty). We have chuks (disposable and reuseable) for him, but I don't think he wants to "see" how often its dirty. He is competent. We just went through an issue with a nurse coming in their home accusing my sister of elder abuse (not directly, but through an elder abuse service, and my dad appears to have no concept of what that could exactly mean, but they decided unfounded). My sister and I take turns at their house (I've not been there in 10 days because I came down with sepsis and a recurrence of cellulitis). We recently decided to send him to the ER for the bedsores. The hospital would have preferred to send him home. He was actually clear of all sores when he came home in June, but (to us) refuses to do enough self-care to keep them at bay. I am ready for them to go into assisted living (mom is another story), but my Dad (I feel) has some unreal expectations about staying home. My sister does most of the work with Dad, I usually do our Mom. Its a lot of work on her because she is more able than I am (we both have disabilities, just different types).Currently he is in rehab at a different facility than the last rehab. I did tell him if he could clear the sores, he could go into regular assisted living. Neither parent can really live at home without us coming (we are 3 years in). He is a fall risk because there's no strength in his legs. I think its time for assisted living or similar. I hate conflict and confrontations. I don't know how to get from rehab to assisted care without a battle. If I get another round of illness, then its my sister on her own again and she's really done (whether she realizes it or not). And, no, he does not want to go. But we are just going to go back to the sitting without moving and new sores.If you've been here, any pointers? Things we should check into?

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Sounds like your father isn’t competent.

Tell the hospital or rehab he is an unsafe discharge.

His situation isn’t for you to be burdened with. If he is going to sit around in his crap all day and you have to wear shoes so that you don’t step on urine or feces, that is beyond disgusting.
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Reply to Southernwaver
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Thanks to everyone leaving responses. It really makes Me feel like I'm not just floating out in space.
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Reply to OldestButSecond
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Your father needs to be in care where several shifts of people can care for him. That will be required given his sores and his weight. I would stop enabling this, would call APS and tell them that your father is continent but that you cannot continue in his care either mentally or physically. If he has sores such as you describe then he is in danger of sepsis and death. They were negligent to go waltzing off with an "everything's OK here". It ISN'T OK. Not for him and not for you.

I would not partake in enabling this unsafe and unsanitary condition. I am so sorry. I would be leaving and calling APS for wellness check on the way out the door. Whatever you do do NOT take on POA; it is difficult enough with a person who is cooperative; it's impossible in conditions like this.

So sorry for all you're going through.
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OldestButSecond Sep 28, 2024
Thanks for the support. I feel so much better knowing that I am thinking in the right directions with this whole situation.
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Make sure the hospital knows that he is an unsafe discharge no matter what: that he doesn't cooperate in his wellbeing, and he is 330 lbs and a fall risk. I agree with others that he should be and can be transitioned directly into a facility.

One issue is whether he has cognitive capacity to make such decisions. If he doesn't have a diagnosis, he technically could check himself out to go home -- but of course no one should go to retrieve him.

Another issue is whether someone is his PoA or not. If he has a PoA then this person needs to read the PoA document to see what activates the authority (and it's usually 1 diagnosis of cognitive impairment sufficient to need the help of the PoA). The PoA asks the primary doc (or whoever diagnosed him) to put it on the clinic letterhead and sign it. Then PoA needs to retain the copy as proof.

Then there's the issue of affordability. It's one this to say someone needs to go into AL, it's another thing for them to be able to afford it. And you have 2 people who need to each pay.

If it were me I'd work with your Father's primary or cardiologist to get him assessed for LTC, which is covered by Medicaid (if/when he financially qualifies) plus his monthly SS income.

You and (especially) your sister need to stop enabling your parents. You mean well but are honestly just delaying their appropriate care. Your Dad will just ping pong between the ER and home while exhausting the both of you... and he obviously doesn't care what affect it's having on your lives. Therefore you both need to have clear boundaries that you defend no matter what so that you aren't burnt out to a crisp. You yourselves are having your own health battles. In no way can or should you or your sister continue to attempt to care for either of them. As you can see it is unsustainable on all fronts.

If there is no PoA, and your Dad has no diagnosis of cognitive incapacity, and he continues to not work in his own best interests, then call in social services (or APS) and work to get the a court-appointed legal guardian who will facilitate the appropriate care for both of them, whether they cooperate or not. This will solve all problems as it did in my family. BUT... you must stop helping them as this will just delay the inevitable. I wish you success in getting them the right care.
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OldestButSecond Sep 28, 2024
When he was assessed at the ER, they wanted to send him home. They got to see him when he was all fresh from a shower, not how he was before. My sister did a lot of talking with the ER doc to explain the background. I don't exactly know how you send someone with a quarter sized bedsore several layers of skin deep back home when its obvious that it isn't working (there were several others as well). He also had a UTI (which is why they finally kept him).
My sister is POA. The primary is on our side.
This is hard. I think its mostly because my sister somehow isn't ready (she can get very into it, then loses steam). There are a lot of steps that have to be done and its going to be a LOT more work before its all over. I'm ready, but I can't take over and do them. I have laid out the rough outline of things that need to be done, which is about all I can do.
And, I agree, its not sustainable. Since July 30th, I have been unable to assist due to being ill (including being in the hospital). So its been all on her mostly for the last 2 months. And, I know if we let him come home, we will just being going around in circles with the same issues. Right now, he is out and he should stay there.
I am so glad that people have come in and said that I am at least thinking in the correct direction. Sometimes I feel like I talk to hear myself jabber. I am fortunate in having a very supportive spouse.
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Are you or your sister POA?
Are both your parents cognizant?
If neither of you are POA, if both are cognizant you and your sister should back off.
APS can not "find neglect" as neither of you are "responsible" for either of your parents. (Unless you are POA and are acting as such)
If you or sister are POA and are acting as such THEN you can do something.
Next time dad goes to the hospital you firmly tell them that he is not safe at home, he neglects his care and mom can not care for him completely and neither can anyone else in the family. To discharge him to home is UNSAFE. If he goes to rehab you tell them the same thing.
Your dad may be eligible for Hospice (CHF would make him eligible, untreated pressure sores while alone would not make him eligible it does mean he has other problems) With Hospice a Nurse would come in 1 time a week, more if needed, a Wound Care Specialist would be assigned as well. A CNA would come at least 2 times a week to bathe dad as well as order personal supplies. The Nurse would order equipment and medications. All the supplies would be delivered. And you could request a Volunteer that could come in and stay with dad while mom gets out to do things.
You would also have a Social Worker that would be assigned and they can help determine if AL or if Skilled Nursing would be appropriate if dad can not remain at home. And they can help navigate the process if there needs to be an application for Medicaid.
And I have to ask....Is dad a Veteran? If so check with your local Veterans Assistance Commission and see if he qualifies for any benefits through the VA. If he has what is determined to be "Service Connected Disability" there might be a little help or a LOT. (that is dependent upon what his % of disability is. And mom may also benefit depending on their income as some programs are "needs based")
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OldestButSecond Sep 28, 2024
My sister is POA. She was already helping them with some things, so we talked it out and decided this would work best. I did have to push (more like nudge) her when he went to the hospital this time. The hospital saw him all nice and clean, not how we get to see him at home. He is competent, but his own worst enemy. One point in our favor, his primary doctor is on our side here. I didn't want to make her uncomfortable, but she was the one they were going to nail with the neglect. While it is unfounded for that incident, there is an open door for the next.
The hard part to this journey is that their income is great if they could take care of themselves. They can't really pay for people to come in the way they need and make to much for needs based programs.
His primary was able to get him in a facility, that will do the care he needs right now, for the next 30 days. I have not been there yet, but I did research the place.
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My mother's Assisted Living/MC does not accept or treat bedsores after a certain stage.

If the sores continue, your father may not qualify for Assisted Living. AL is just that - to ASSIST. Laundry. Light housekeeping. Meals in a dining room. Not nursing care.
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Reply to cxmoody
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Hi Oldest - wow, what you described is unlivable and manageable - and really, neither of your parent's should have placed this on you and your sister. It's terrible.

Your father needs to be placed directly from the hospital - I'm sure others will provide the steps to proceed this way. But if he went home from the hospital, then it's a mess all over again.

And really, you should present it to your father that going to an assisted living would be great for him - he'll receive a better quality of life and receive the proper care for him to get healthier. I wonder if assisted living would even be enough, given his condition. It's something to discuss w/the hospital social worker for the best options. Otherwise, he should be told that remaining as is is just a formula for worse health problems for him. He needs a total re-haul - healthier diet, physical therapy and exercise, cleanliness.

You and your sister need a break too - it's no way to live. I really hope things get better for the two of you and you can focus on your own lives - you deserve it.
Wishing you my very best ~

ps - and by the way, where's he getting the White Castle hamburgers?? It can't be him since he can hardly walk. Nothing should have been in his kitchen that wasn't healthy food - like a Mediterranean diet. No carbs, sugars, processed foods. Just fruits, veggies, chicken, fish, etc. It didn't matter what he wanted - you can't appease someone like him and add to his problem.
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