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I apologize for the length! I am his only child and next closest relatives are elderly and have their own issues.


Pre-Covid he was living in an independent living facility, taking the van to dr. and PT appointments and preparing for 2 possibly outpatient procedures to address some health issues. When Covid hit, he could no longer go to PT and, based on the grocery lists he sent me, was no longer being very compliant with his diabetic and kidney diet. I refused to buy several things despite him not being happy with me.


When we saw the doctor most recently when offices opened again for regular appointments, he wasn’t a candidate for any elective surgeries anymore. (General anesthesia is too risky for him now and maybe was before but no one has said that it was.)


He has a single kidney for the past 50 years with no need for dialysis, is diabetic but mostly controlled it with diet, and had the usual cardiac issues but never a heart attack or pacemaker.


Then little things started to happen - swelling, needing oxygen, stomach issues. He ended up having emergency surgery for a hernia, which is tolerated remarkably well despite complications in surgery.


Due to trying to get his digestive system working again while keeping the line kidney in the right place, he was in the hospital for 2 weeks. In that time, a catheter remained in place as did a drain. He seemed off and on not as clear thinking. At one point when he was about to be discharged to rehab to get his mobility back safely, the catheter failed and the ONLY bad nurse we had wouldn’t hear me out about it not working. After his shift, they got that fixed but then has to deal with issues from that.


He was discharged to short term skilled nursing but retained the catheter and drain for now.


I am waiting for someone to give me guidance. I can’t go stay with him most of the day now as skilled nursing isn’t allowing visitors due to an increase in Covid again. I talk to him and nurses at least daily. They can tell me the concrete daily things but I’m no longer seeing lab results or doctors. Even when I was, I feel like no one was giving me solid information that helped me figure out the “what next?”


I feel like his kidneys may be shutting down but don’t want to “give up” on him. I’m trying to prepare realistically and financially for his future but be positive with him. I think he’s being treated well, but he is becoming more demanding and less compliant. He’s not eating as much now, sounds out of breath and less able (or willing, not sure which) to help himself with things he can do.


Tuesday will be a week in rehab. I am not sure he has made any progress. I’m not sure whether to look into SSI or veterans benefits and for what type of situation. I feel totally in the dark and unprepared.


Any insight is welcome.

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Thanks for all of the great advice! Ducks in a row? Yes. But too many ducks and too many rows. It would have been easier if he hadn’t retired right as everything we was being computerized. He was a non-digital person living in a digital world.

Bottom line: Everything is now online, I think.

POA - property and medical is present. AD - several copies were on file but I got the latest to the rehab facility admissions director.

Medicare - He has plus a supplement that I think is through his work where he retired.

Medicaid - I don’t think he qualifies due to his pension plus social security monthly income is just over the limit, though he does have a plethora of copays for medical and prescriptions. He also lives in an independent living facility, which isn’t cheap.

VA Benefits - He could get Medical but the issue is location. We applied for disability but don’t know if he will qualify.

He has a burial plot, but I haven’t found the paperwork for that. Life Insurance - I found one policy that would only pay out about $5000 at the age he is now.

He has some money in his checking and savings that can be used toward his care.

I should be talking to his care team tomorrow for an update. Based on talking to daily nurses and him, I can ascertain that he is declining. I know he’s not eating, which is very unusual, and seems somewhat confused and very winded. He says the people there are nice and helpful but that he’s not doing well.

Here are questions I have now:

If I ask for palliative care, does that get him kicked out of rehab before 20 days?

Is assisted living going to be enough care?

Does Vererans Aid and Attendance cover anything outside of independent living? Not sure he will qualify for that either.

I can probably find answers on here also, so feel free to redirect me. I just have little time to search when trying to figure out what else I should be doing.

Someone asked about my boys: One is very helpful but will be leaving for college in the fall depending on Covid restrictions. The other has a significant disability and is unable to help.

Reading in here, I can relate to those who are caring for someone who didn’t always do a great job of caring for them. I’m in that situation but I am me, not him, and I need to know that I gave my best even to someone who didn’t do the same for me. Even though he has made me mad at times during his hospital stay for being demanding, I can’t stand to feel like someone is in pain or feeling anxious or upset and I don’t know how to best help.

Thank you for your kind words. This is tough, but I suddenly feel a lot less alone. I’m very thankful for you all.
Helpful Answer (2)
Reply to Ccbindfw
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I truly understand. My dad has similar health issues with LBD. I have decided all I can do is keep him comfortable. I am so sorry you are going through this.
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Reply to Sunnydayze
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In addition to the SW at the rehab, you may want to consider talking with a SW with the local Area Agency on Aging, sometimes they give a better overall view and can recommend different LTC options than what's available at the rehab.
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Reply to TNtechie
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What "little" cardiac issues. The swelling and needing oxygen sounds like heart failure. Swelling can be caused by his kidney.

You need answers. You need someone to tell you what his labs are showing. Do u have POA for medical? If not, Dad can sign paperwork saying you can receive his info.

Why would you look into his Social Security? Medicare pays for 20 days in rehab at 100%. 21 days to 100 days 50%. Some supplimentals may pick up the difference. If not he will have a balance. You have a right to a care meeting even if by phone. SS only gets involved when ur on Medicaid. Will Dad need medicaid to pay the rehab bill. You may want to talk to the Social Worker at the facility. Tell her you need to know how everything works.

Does Dad already receive VA benefits?
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Reply to JoAnn29
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I'm hoping your dad has all his legal ducks in a row: you are his medical and financial PoA, he has a Living Will, Health care Directive, Last Will + Testament etc. Also, make sure you have all the HIPPA clearance for communicating with his medical team as his legal advocate. What is his financial status? Is he comfortable? Or is this a concern? Does his current facility have AL options? You may want to check on the availability, just in case, as well as look into in-home agency care options. Are any of your sons old enough/mature/reliable enough to help you get his bills automatically paid online? The older we are the longer it takes us to recover from a medical event. Also, him seeming "less able/wiling" to help himself may be a cognitive change from the surgery or anesthesia, or a UTI. BarbBrooklyn has good advice to talk to a SW who can give you next steps when you ask the right questions. The priority is to figure out his health prognosis and post-op care. I wish you much help and wisdom as you enter "the learning curve"! Keep coming back here for advice from experienced people.
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Reply to Geaton777
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The sad truth is at 89 we can fail quickly. You would be blessed if he didn't linger for another decade with Alzheimer's, it is just brutal to lose a loved one that way.

I agree with Barb about the care plan conference and clarifying what dad wants moving forward.

Sometimes the best thing that we can do is keep them comfortable.

Great big warm hug! This is just difficult and then you throw in covid and it makes it impossible. Being on hospice should allow visits, be sure and ask if that is the route that dad chooses.
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Reply to Isthisrealyreal
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I would call the Social Worker and ask when they are scheduling a care conference. That is where the therapists, director of nursing and sweet all sit down with you and talk about progress or lack thereof and "next steps".


You want to ask "what level of care will my dad need upon discharge?
Can he remain here as a long term care patient?
Is it time for a hospice evaluation?"

You want to ascertain what your dad wants in terms of continuation of aggressive care.

You want to make it clear to them (if this is the case) that you will not be taking him home to live with you.

I'm sure others will be along with more suggestions.
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Reply to BarbBrooklyn
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