How to get help for my dad - patient advocate?

Parent Cafe
1

As a moderator, I have to be careful about the language I use, but I would swear if I could in describing the horrendous care my father has gotten after his open heart surgery in April. He has regressed since going home, even though there are aides there almost 24/7. My sister is at the end of her rope, trying to get him help. She was in tears on the phone just now, and she is not one to cry easily. I told her she needs to get him back to the hospital NOW. If she can’t get help moving him, call 911.

So my question is if any of you know if there is a type of professional we can retain to manage his care. The home nursing company has been useless. Is there any type of patient advocate or something? The social worker at the hospital was nice but ineffective. The people at the PT company are nice but ineffective. Etc., etc. It’s like EVERYONE is dropping the ball a little and the end result is really, really poor.

Money is not an issue for my dad, so we’re willing to pay whatever is needed.

2

My husband’s analogy is that it’s like an architect and engineers providing construction documents for a large building and handing them to the subcontractors without having a general contractor overseeing everything. It would be chaos. And that’s what we’re seeing.

3

My thoughts are with you as it is so hard to see a loved one struggle. :frowning:

If he is covered for home health and you are not happy with the current agency can you check out others?

Does his doc feel he should be progressing better? I would think his physician (office) should be an advocate.

What kind of help is he NOT getting? Where is help lacking or subpar? I just have to wonder a bit if his improvement is just limited at this moment due to things professionals cannot control??

4

Are there any geriatric care managers in his area? These are professionals who specialize in keeping all the moving parts running smoothly. They coordinate care at home to make sure the patient’s needs are being met. If you can’t find any by just googling, ask the discharge planner at your dad’s hospital.

5

How about starting here? https://advoconnection.com/

6

Call the local council on aging and see if they can help. They may have access to case managers or ombudsmen or some such thing.

7

I probably don’t even know all of the issues. As I understand it, there are several specialists involved who have different ideas as to what should happen. Like if he needs a pacemaker. At the hospital, he wasn’t moved enough, which led to all sorts of issues, including kidney problems, difficulty breathing, high blood pressure, and bed sores. My sister PLEADED with the nurses and aides to do more, as the doctors and PAs were calling for, and they always had an excuse as to why they couldn’t move him.

Then they arbitrarily set a time limit on the in-patient rehab stay. My sister wondered at the time why they would do that, but she trusted them. She’s kicking herself now, because it’s obvious they sent him home too soon. The sores on his leg got worse. The doctor prescribed a full course of antibiotics, but sis says his leg looks worse now than a week ago.

He’s not getting enough physical therapy sessions - only twice a week. I was on the phone yesterday trying to figure out what’s going on. I’m waiting for a call back.

The in-home nursing aides haven’t been great, either. :frowning: They really don’t do much. Dad has regressed to the point that he can’t even walk with a walker. The other day, my 17-year-old nephew, who is 6’-6" tall, had a hard time getting him back in the house after an appointment. He told his mom, “I don’t know what would have happened if I hadn’t been there, because the nursing aide was a petite woman who couldn’t have moved him.”

My dad walked all over South Africa last summer and exercised almost daily. He recently flew to Dallas for a meeting about a start-up company. He was scheduled to fly to the Caribbean for a consulting job soon. He was going to speak at a conference in London in July, and I was going to accompany him and Mom. Ack, this whole thing makes me wonder if he just shouldn’t have had bypass/valve replacement surgery.

@LVKris @sabarau amd @bajamm thanks for the info. I’ve left a message at a professional patient advocate company. I guess I’ll call several places today.

(I know I’m leaving out a lot. I’ve been on the phone almost daily with my sister for the past month.)

8

I am so sorry. It really hurts to read this and makes my blood boil too. Both my MIL and Mother lived with us. for the last years of their lives. My MIL for 7 years and my mother for 5. I was their main caretaker, but had help. The agencies were not helpful at all with the exception of the Hospice aide that my mother got for her last month for 3 hours a day, I couldn’t recommend any of the others for elder care without someone who cares supervising. We had issues even when I was right there. It was the reason my MIL could not return to her own home several hours from us. We could not trust that she got adequate care.

We did find a “sitter” for my MIL for several days a week who was not gone care certified at all. Housekeeper, baby sitter, cleaning lady who was happy to care for her for 20 hours a week. That MIL had no medical needs made that possible. She was getting forgetful and disoriented which made it risky to leave her alone, so this arrangement allowed me to go places or not have to keep an eye on her. Someone like that through word of mouth may be your best bet. But for 24/7, that’s a hard quest. The fact of the matter is that it’s nigh impossible to find someone or a system of someones to care adequately for a loved one full time. Someone who really cares has to be nearby and oversee the the arrangement unless you get very very lucky.

9

It takes a long time to recover from open heart surgery. Much longer than they like to tell you. The body needs to heal. It’s a slow process.
What specific type help does he need? Often times an aide doesn’t really do the type work you need them to do.

My dad’s home health nurse gave us numbers for companies to hire private duty nurses if necessary. She also said if you don’t like one then fire them and get another.
As to aides she said you have to tell them exactly what you want done or nothing will be done—don’t expect them to volunteer even though it seems obvious what needs doing. And same—if you don’t like them get them replaced . You really need to like that person in your home.

Hugs to both you and your sister. When my sister and I first brought my dad home from the hospital it took two of us 24/7 to manage. And we weren’t sure we could handle it then. Things have significantly improved but it’s 8 weeks later (and we’re now trading off duties).

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@gouf78, thanks for the post. I have a trip to Austin scheduled week after next. I may extend it longer than planned since sis has to leave two for two weeks at the beginning of June to train teachers in south Texas. She just can’t get out of the obligation.

I’m not sure exactly all he needs at home since I’m not there. I will ask my sister. I know she has talked a good bit with the aides, but she can’t be there 24/7.

11

My dad had PT scheduled twice a week also following hospital release but he was in no shape to do anything. Fortunately he’d been through it once before so we had the bike pedals, weights, exercise bands already plus all the exercise instructions. We’ve managed our own PT. Even though he couldn’t do the exercises at the time we had the therapist teach us how to do the exercises, how to use the walker correctly etc. PT will come back if we call them and start now that he is stronger.

PT taught him exercises that he could do in bed also to strengthen his legs. Very helpful.
Also found that YouTube is my friend. From PT to giving baths, changing sheets, turning people there’s a video for that. I get my nursing degree next week (or should with all the stuff I’ve had to learn)

12

As to his leg sore—does he have anything topical for it? Oftentimes topical antibiotics will work where oral ones will not —might take a compounding pharmacy to create one depending on the infection.

13

Thanks for all the great suggestions. If I don’t respond to each one, be assured I am taking notes and will talk to my sister. She’s at the doctor’s office right now and I told her to ask about the topical antibiotic.

14

Do you have a chest strap? It goes around the chest so one or two people can catch someone who’s about to fall. PT used it in hospital for when dad was on walker and we used it at home for awhile until he was more steady. They just sent it home with us.

There are real tricks to getting someone up out of a chair and onto a walker. The strap, bracing their feet with yours. A big one is they need to wear shoes since it makes them so much more steady. My dad found it hard to walk without them.

15

Bed sores can be a huge problem, along with all the other challenges you are describing. I agree with the benefits of a geriatric case manager (had one fabulous one and one adequate one after the first one unfortunately passed away) for my dad for 7 years. But it takes time to set those up and what you are describing is more of an acute constellation of problems that warrants immediate attention. If you cant get him up you can call the fire Dept or EMS or 911 and get him to the hospital to be evaluated and treated. If you can, be sure they readmit him (though the hospitals get dinged for a readmit of a medicare patient in less than 30 days, but too bad, so sad for them) and be sure he is actually ADMITTED (not just kept for observation) so after the required number of days he can go to rehab and have it covered under Medicare.

https://www.verywellhealth.com/an-explanation-of-inpatient-v-observation-status-1738455

16

@MaineLonghorn, I’m so sorry your Dad is suffering. Your sense of urgency is very well placed.

My Dad’s rehab facility was EXCELLENT. But it was in Dallas. I wish I could be of help to you.

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My sister actually liked the rehab facility - Dad just wasn’t there long enough.

18

A real bright spot is I’m sure your dad is motivated to get better and do the exercise and work to make that happen. He’s just not quite able yet It’s just a slower healing process than anticipated I know and it’s a 24/7 job that wears continuously not only physically but the constant worry is even worse. “This too shall pass” is my mantra. Things can improve exponentially as your dad gains strength.

19

We wanted my Dad to stay at the acute rehab place longer, but they (Medicare?) cut him off at 21 days. Then he went to an inpatient rehab that was less intensive, but he got to stay there for at least 3 more weeks. It sounds like your Dad really needs to go back to acute rehab.

20

This is tangential to your immediate issue, but helps explain the hospital’s potential resistance to readmitting your dad if it is less then 30 days since his discharge
https://www.nytimes.com/2019/01/18/health/medicare-hospitals-readmissions.html

https://www.cms.gov/medicare/medicare-fee-for-service-payment/acuteinpatientpps/readmissions-reduction-program.html