Mom has aspiration pneumonia...

[GilWest]

She had been acting funny for a few days. I thought her pain meds were too much, because she seemed sleepy. Blood work and x ray checked out ok a few days ago. She has just seemed "off" for a few weeks, but then she started running a fever with cough. So here we are in icu! I also think she is developing FTD because she whines with every breath and just seems altered after cutting back her pain meds. I think she might be getting close to the end, but my gut says not.

 

[Guille]

She had been acting funny for a few days. I thought her pain meds were too much, because she seemed sleepy. Blood work and x ray checked out ok a few days ago. She has just seemed "off" for a few weeks, but then she started running a fever with cough. So here we are in icu! I also think she is developing FTD because she whines with every breath and just seems altered after cutting back her pain meds. I think she might be getting close to the end, but my gut says not.

I hope she hangs in there. Don't ever give up. See if the docs can give her some dexamethasone (for inflammation) with the antibiotics. Dexamethasone works for some people. May a blessing be upon you and your mom.

Guille

 

[dalvin]

Thinking of your mom, you and your family

 

[affected]

So sorry about your mum.

It could be that the pneumonia is causing her other issues that make you wonder about FTD. Pneumonia and fevers can leave a person very disoriented.

Tillie xx

 

[GilWest]

So sorry about your mum.

It could be that the pneumonia is causing her other issues that make you wonder about FTD. Pneumonia and fevers can leave a person very disoriented.

Tillie xx

Mom is a mess physically as I have posted before. I blame the nursing facility...and myself. I suspected she was not getting proper care in The latter part of July. I put in for transfer, but there was no other beds available at the other facility in our area. I saw her yesterday and freaked. How could anyone with a brain not have seen that she was not well with something non-ALS related? This was a case of looking at the numbers (vitals) and not the patient.

 

[GilWest]

duplicate post

 

[nebrhahe53]

Don't blame yourself. Its a sad state of affairs but the reality is that most long term care facilities do as little as possible for their patients to reap the most profit. My wife's mother is in one of them and you would be amazed at the stories.
That's what this country encourages-wall street millionaires over the health and welfare of its people.

 

[Atsugi]

Gilwest, I'm sorry to hear this. But Tillie is right; an opportunistic infection can disorient a person greatly. She's not herself. I trust the doctors will bring her back.

Also, I'd go with Neil's wisdom: Don't blame yourself. It's the disease. It's the system. I know you're doing the best that can be done.

 

[Diane H]

If she has aspiration pneumonia it is because she continued to be fed when her swallowing became a problem. Unless she agreed to a feeding tube the nursing home had a choice between starving her or or inevitable aspiration. The failure to recognize her deterioration is different but somewhat understandable since ALS patients are expected to deteriorate rather rapidly near the end. The big issue for me is their failure to notify you of the change in her.

 

[tinyandme]

If she has aspiration pneumonia it is because she continued to be fed when her swallowing became a problem. Unless she agreed to a feeding tube the nursing home had a choice between starving her or or inevitable aspiration. The failure to recognize her deterioration is different but somewhat understandable since ALS patients are expected to deteriorate rather rapidly near the end. The big issue for me is their failure to notify you of the change in her.

Agreed! I work in long term care, we honestly do not have the funding for staff to care for an ALS patient. Hospitals are the same. Hope you are able to be there with her! And I hope she is feeling better soon, your both in my prayers tonight xxoo

 

[ECpara]

So sorry about your mom! FTD-like symptoms can be brought on by the stress of illness. My husband had a bleeding ulcer in Feb/March, was in ICU for four days. After that, we all thought he was going downhill quickly; lethargic, super forgetful, depressed, crying, etc. Well, he has bounced back! Not to say the disease isn't progressing, it is. But his outlook and mental capacity are so much better! He is more alert and not nearly as tired or depressed. So take heart, maybe your mom will bounce back, too, once she gets over this hurdle!

 

[GilWest]

If she has aspiration pneumonia it is because she continued to be fed when her swallowing became a problem. Unless she agreed to a feeding tube the nursing home had a choice between starving her or or inevitable aspiration. The failure to recognize her deterioration is different but somewhat understandable since ALS patients are expected to deteriorate rather rapidly near the end. The big issue for me is their failure to notify you of the change in her.

Feeding tube in place for nearly 4 months now. She cannot handle secretions. She choked on a huge wad of phlegm today while on bipap. On vent right now. We were aware of the change, but the home just blew it.

 

[GilWest]

Agreed! I work in long term care, we honestly do not have the funding for staff to care for an ALS patient. Hospitals are the same. Hope you are able to be there with her! And I hope she is feeling better soon, your both in my prayers tonight xxoo

How hard is it to follow a care plan that is discussed daily? They were reminded numerous times about her oral care. Upon admission, to hospital it looked as if a bird had shat in her mouth. The nurses at hospital are shocked at her sore. The home said it was getting better. She was not being managed as agreed upon in the care plan...and I have pictures to prove it.

 

[Barbie]

Gil, I saw the same terrible treatment of my mom when she was in a nursing home with Alzhiemers. (other health issues put her there to "rehab" after a hospital stay). My mom was in a medicare facility--and I believe that if she had been in a private pay facility the care would have been better. regardless, after her stint there, we brought her home and hire CNAs to be with her, as my dad is in his 80s and could not care properly for her.

IMHO, is there anyway you can get in home care for her and bring her home? I know you don't want to take on her care personally, but you could have an aide with her at home 8,10 even 24 hours a day. she would probably be happier and better cared for, easier on you to watch out for her and make sure she is getting what she needs, and make her last days much more pleasant. I would take to the hospital social worker about that plan, they may be able to give you advice on getting it all in place.

the stress and guilt on you having her in a facility that is not caring for her is great, and home health care would be best. this is just my opinion--I do not know your situation.

 

[GilWest]

I never said I didn't want to take on her care personally. Those were mom's wishes. My care would probably be worse than the nursing home care, and nobody can guarantee great home health workers.