Caring For Aging Parents Support Group

Caring for aging parents can be a difficul time as we become the caretakers for our parents. This broad responsibility can encompass such services as assisted living, adult day care, long term care, nursing homes, hospice care, and in-home care. Whether you have just started caring for your parents or just need a place to talk, we're here.

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Penny45 07/29/2014

I last wrote about trying to find the right home health company... but it looks like it may be some time before we can bring her home. Since going into rehab a month ago, my mom has gotten worse - not better. One aide left her in the hallway with a wet head. From that she got a sore throat and then pneumonia set in. Big setbacks. She had been doing pretty well in PT, working hard and with a pretty good attitude but now she is depressed and just seems sort of "out of it" much of the time. I'm talking w/nurses and trying to keep up with the meds, altho' I'm no expert, but I have worked to keep her on the antibiotic for the pneumonia and Vesicare for the bladder incontinence. But now she is retaining fluid, big-time, and they have doubled her Lasix to try and deal with that. Big swollen ankles, still a bad cough, very lethargic.
What to do??? I do think she would get better here at home... but she's TOO weak to be here. She would be downstairs, we're up... can't hear her but we're looking into the right intercom system. But she has to be able to get to the bathroom at night, etc.
Still, I don't feel like she's getting the right nutrition out there... doesn't eat right, food doesn't taste good. Mostly eats the desserts. Sits in the wheelchair SO much of the time... ankles swell, etc.
Any thoughts would be appreciated... I'm so worried. I mean, she's 94 1/2 yrs old so time is not on her side... but I came here (from Costa Rica) largely to keep her from suffering and going into a nursing home... and yet, look at what's happened!!!

deleted_user 07/29/2014

Have they given a definately diagnosis? Pneumonia is treatable. The fluid retention is usually an indication of congestive heart failure. There are some things they could be trying like elevating her legs and using pressure cuffs.

I know this will sound odd but I would get mom transferred back to the hospital for treatment of the pneumonia and fluid. Make sure she is admitted and stays three days since this will reset the Medicare clock and give her 20 days of inpatient care on them. Let the doctors run a bunch if tests and make sure there isn't something they are missing.

At the same time I'd look for other rehabs. Ask them how they would treat these conditions.

Your mom is a ways away from being able to come home unless you bring in 24 hr nurses. I'd start by looking for definate answers from the doctor.

Penny45 07/30/2014

Thanks, Tigg. Some good ideas there. Yesterday's x-ray showed no pneumonia so I'm hoping that's gone. Another UTI seems possible but they have done blood work and I guess that would show it. We like her primary doc and he and his wonderful nurse seem to be in close touch w/the rehab place. The fluid retention is of great concern... I didn't realize that was related to the congestive heart failure, which she has had or been diagnosed with but which I tho't was gone. I need to read up more of it, I guess. It's all sooo stressful. And I just feel so bad for her. We do try to elevate her legs but haven't done the pressure stockings. That might be good. Elevating the legs is tough... the chair in her room isn't really high enough and it's uncomfortable from in the wheelchair. If she's in bed (which she resists!!) then she has a problem needing to get to the bathroom quickly. Just a vicious cycle it seems....

peaceful 07/30/2014

Hi, sorry to read about your situation. You said it with the cycle part. That is so true and you have to choose your battles with that. They doctors seem to , in my Moms case.
She has fluid issues but they leave it because she would feel unwell if they tried to take much off. It bothers her to know it is not going to get better.
I hope you have found some relief since first writing.

Hugs to you
P

pd2012 07/30/2014

Penny, I would ask her doctor or nurse to check and see if during the x-rays for the lungs if they were able to detect as to whether there was an enlarged heart which sometimes is a symptom of CHF. Once diagnosed with CHF, it never goes away, it's now an illness that has to be monitored and treated when necessary. That's why they've doubled up on the Lasix dosage to ensure in case the CHF is a cause for the swelling.

Your mother is almost 95, God bless her. I'm sure her appetite will pick up when she recovers fully. I don't know what caused her to be admitted into a rehab facility but at her age, it's hard for her body to recover from illnesses. You could also try bringing in some of her meals that she likes from home, if that's possible. I'm sure they're offering her nutritional foods but she's depressed and not feeling that great which is causing a loss of appetite.

Poor thing, I feel bad for her and you. I'm hoping she mends soon and is able to come home..

Best to you and family
PD

TroJanThunder 07/30/2014

Ok. Look out. Here comes the bottom line person again.

Some things can not be fixed. Why keep trying to get a 94 year old person to get better????????????????

REALLY????????

Let them go with dignity. No tests. no force feeding. PERIOD!!!!

deleted_user 07/30/2014

Trojan I agree. No forcing. But you can try offering some favorites. Try to make her happy.

At the same time I think getting a diagnosis is important. Be prepared for things you may not want to hear, but better to know so you can make an informed decision on treatment.

Penny what I think we are all tip-toeing around saying is your mom may not be strong enough to recover from this. As we age the cards are stacked against us making each illness harder. Get the facts from the doctors and do your best.

Penny45 07/30/2014

Yes, Trojan, my mom and I would totally agree... there's going to be no forced feeding, etc. (She has a Living Will to that effect.) But consider this: Before all this, my mom was a highly functioning person with a paying job one day a week, a just-renewed drivers' license, two cats who love her and volunteer work around town. She has just been knocked off her perch by all this... but if she can come back from this ordeal, she can perhaps have another 6 - 8 months (or more?) of quality life. I want that for her if it's possible. If not, we'll say goodbye... but at this point, it's not certain that she can't pull herself back from this abyss.

TroJanThunder 07/31/2014

Sounds like a good plan. How is she today? Has she perked up at all?

Penny45 07/31/2014

Things aren't going real well. She was pretty alert today... not happy or out of the woods, but more mentally "with it." But I had a disturbing call from her (wonderful!!) doctor... saying that altho' the pneumonia is gone, the congestive heart failure is of concern. He's really very cool... seriously worried about her, which I appreciate. Said her prognosis was not good... CHF is mostly progressive in a woman her age and didn't want to be pessimistic... but wanted me to know his concerns. He said docs aren't good at predicting the future, but experience shows them certain patterns. So I'm prepared for the worst... but still hoping she can pull out of this for another period of time, hopefully AT HOME. That's my main concern... to get her home to die in peace here with us and her animals. Just please give her some time (weeks, days, months?) at home with her cats and her "stuff" and us. That's all...

TroJanThunder 08/01/2014

Yes. Get her home with hospice. If. She bounces back for a while great. If not it will be peaceful

deleted_user 08/01/2014

Penny I think you just found your answer. I would meet with the case manager at the NH today. Tell them what the doctor told you and that your wish is to bring mom home. Have them recommend a hospice agency and call them today. They can arrange to have everything mom will need delivered right away, even over the weekend. You should also figure on having some aides come in to help.

Remember hospice is a service. It is not a death sentence, just a way to provide services. If mom is going to rebound then she will and they will help her do that. If this is her time then they will help her and you make the best of the time she has left.

What I can tell you is that there is a certain peace that comes over you when you accept the diagnosis. You will be able to focus on making your time with mom the best it can be. Good memories, stories, favorite foods(even if it's a bite) and her cats. Don't waste a minute.

jazzkeys 08/02/2014

Penny, so much good advice here, I will just send you my prayers that your Mom makes it home and spends some time with you and her animals. If that is her wish, Tigg is right, "don't waste a minute".

Gentle Hugs,
Jazzy

Penny45 08/02/2014

Thanks again for all your good ideas. I am looking into hospice... BUT the big issue is how to broach this delicate subject with Mother. She is firmly committed to getting better... not yet to facing her own death. Our plan now is to move her to a different rehab in a few days (current one had some problems and was a long drive for me), see how she is doing in 2 weeks or so... and then bring up hospice as the way she can be at home. Doc is ready to give the order, he told me. She probably does have less than 6 months ahead... but Mother is still rather in denial re her age and condition. Today she said to me she just couldn't understand how she could have all these problems that she never even knew she had before. (Remember how high functioning she was only 2 months ago.) I said, Well, Momma, it has something to do with your age. You've lived long enough that stuff has started "breaking," you know. She has never been one to share much of her real feelings so I don't really know how she is looking at this. It's just a one-day-at-a-time thing right now.

TroJanThunder 08/02/2014

That is going to make it tougher that she is in denial. You might try having one of the hospice people come visit your mom and explain they DO try to help ppl get better first. Good luck!

TroJanThunder 08/02/2014

That is going to make it tougher that she is in denial. You might try having one of the hospice people come visit your mom and explain they DO try to help ppl get better first. Good luck!

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