What the feck have you done today?

Do you have P.o.A. in place to be activated as or when required?

Have you considered getting him a Hyperbaric Oxygen Therapy chamber? If appropriate.

It would be interesting to hear what his current diet consists of.
 
Faith said:
I don't know. Until these past few weeks Paul and I only heard tidbits about his treatments. Now that we are more involved and going to appointments we have been asking questions. I will keep that in mind.
He will be scheduling to see his Parkinson's/neurologist dr. soon and next month is his pulmonary dr. appt.. Next internist follow up is 3 months.
One of the first big changes the internist made last week was stopping Dupixent injections for his COPD. He was experiencing so many side effects from it the internist flat out said let's stop it. Especially after reading long term effects of some of those side effects-even after stopping it.
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My mum was on allsorts of meds for a few years with cancer - every few months she'd go downhill rapidly, mentally and physically. I called the doctor out one time and he asked does she want to see a priest - she was in a hospice within 2 hours. The medic (doctor/ nurse?) at the hospice looked at the meds she was on and withdrew some. Within 24 hours she was as bright as a button - and that happened twice over a year or so.

Sounds like the internist is still using their brain - I hope it goes well (y)
 
Faith said:
Yesterday Paul and I went to help his Mom take his Dad(he'll be 80 in May) to a followup doctor appointment. He has chronic lymphadema in his lower legs and developed cellulitis. We took him to Urgent Care 2 weeks ago then to a followup for that last week.
Backing up further, he had always been a healthy active guy then COPD popped up about 10 years ago(he was never a smoker and worked as a cytopathologist in medical facilities his whole working career). Then about 4 years ago he was also finally, correctly, diagnosed with Parkinson's. His health has declined significantly the past 2 years. Now he struggles cognitively and physically. It's hard to know how much the diseases or medications are causing problems. He was able to get around without help in November and can barely walk now. Paul and I get him in and out of the house and car using a wheelchair to go to appointments. His Mom is exhausted and overwhelmed with how quickly things have changed and all the work involved in caring for him.
Luckily they ended up with a new internist from the first follow up visit. He is much more proactive in trying to figure out what he needs and signed off on getting home health care services rolling right away. The first evaluator showed up at their home 3 days later and he starts physical therapy today. Thank goodness for that!
Meanwhile they have to think about their living situation long term and decide what to do.
Good times.
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That’s awful faith I can only send love but life sure has a way of kicking you xx
 
Not me, but my youngest - just arrived off Rio, their vessel has joined a flotilla of other anchors handlers. I didn’t realise oil was such a big industry there

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Faith said:
Yesterday Paul and I went to help his Mom take his Dad(he'll be 80 in May) to a followup doctor appointment. He has chronic lymphadema in his lower legs and developed cellulitis. We took him to Urgent Care 2 weeks ago then to a followup for that last week.
Backing up further, he had always been a healthy active guy then COPD popped up about 10 years ago(he was never a smoker and worked as a cytopathologist in medical facilities his whole working career). Then about 4 years ago he was also finally, correctly, diagnosed with Parkinson's. His health has declined significantly the past 2 years. Now he struggles cognitively and physically. It's hard to know how much the diseases or medications are causing problems. He was able to get around without help in November and can barely walk now. Paul and I get him in and out of the house and car using a wheelchair to go to appointments. His Mom is exhausted and overwhelmed with how quickly things have changed and all the work involved in caring for him.
Luckily they ended up with a new internist from the first follow up visit. He is much more proactive in trying to figure out what he needs and signed off on getting home health care services rolling right away. The first evaluator showed up at their home 3 days later and he starts physical therapy today. Thank goodness for that!
Meanwhile they have to think about their living situation long term and decide what to do.
Good times.
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Hope everything works out for the best, god bless you all.
 
Sorry to hear Paul's dad is so unwell Faith and the impact its having on mum in law and familly. It's always difficult with medical staff and I hope their assessments of treatments vs benefits are short and effective.
 
Hugo Magnus said:
Do you have P.o.A. in place to be activated as or when required?

Have you considered getting him a Hyperbaric Oxygen Therapy chamber? If appropriate.

It would be interesting to hear what his current diet consists of.
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They had POA's set up years ago. Paul's Mom is looking for them. There is a nurse coordinator that we met at the first follow up appt. "Lexy" is part of the internists team. She is the connection between the doctor, patient, and service providers. She also helps patients find other resources and can help them set up new POA's if needed.

I will put in my notes to ask the pulmonologist about the chamber.

His diet is minimal because he doesn't have much of an appetite. Could be from the meds, disease, or lack of activity. Not to mention the difficulty eating because his hands shake so much. They do like burgers and chicken for dinner. He used to eat fruit. He also likes curried food. He is East Indian and grew up eating that. Mom in-law, she is German and Irish, makes awesome curried food. Last night I brought swedish meatballs, noodles, and cole slaw for dinner. He ate a lot of it. Maybe because it was a busy afternoon and more energy was expended? He did say it was really good too.
A big problem they have is, he has become nocturnal. Parkinson's messes with circadian rhythm's. The dupixent may have aggravated it. He's up all night and sleeps most of the day. That means he also wants to eat at night. Paul's mom is not nocturnal and is very sleep deprived. She tries to nap and can't. Yet she gets up to fix him food. Snacks next to his chair don't always cut it. He wanted pancakes at midnight 2 nights ago. She couldn't figure out why pancakes? I said it's because midnight is his morning-time for breakfast. Paul said it's because there is never a bad time for pancakes.
 
Dox said:
My mum was on allsorts of meds for a few years with cancer - every few months she'd go downhill rapidly, mentally and physically. I called the doctor out one time and he asked does she want to see a priest - she was in a hospice within 2 hours. The medic (doctor/ nurse?) at the hospice looked at the meds she was on and withdrew some. Within 24 hours she was as bright as a button - and that happened twice over a year or so.

Sounds like the internist is still using their brain - I hope it goes well (y)
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In one of her routines, comedienne Kathleen Madigan (she is hilarious) says she asked a friend about somebody in hospice care. He said, "They aren't getting it anymore! What they don't tell you beforehand is that 17% survive after they take away all the meds!"
 
Faith said:
In one of her routines, comedienne Kathleen Madigan (she is hilarious) says she asked a friend about somebody in hospice care. He said, "They aren't getting it anymore! What they don't tell you beforehand is that 17% survive after they take away all the meds!"
Click to expand...

Appropriately prescribed drugs are a leadinging cause of death in the US, and probably throughout the western world.
 
Dad was all agreed to move into a nursinghome, not care home, and totally left field they have given him an anti phsycotic and are now saying he's improving so we are reviewing again. It's like they want to keep him in the hospital orrr, keep him out of an expensive nursing home because he is state funded and yet when I asked them last week, "dad's out of it, have you given him something to wipe him out so he's a quiet patient?" they denied it

So I can understand what you and the family are going through Faith. The way they work sometimes give the impression that the longer they are in hospital, the more damage it does.

We've told them to stop the anti phsycotic as it seems when he is restless at night, they seem to be drugging him so the staff can have a quiet night.
 
Noobie said:
Dad was all agreed to move into a nursinghome, not care home, and totally left field they have given him an anti phsycotic and are now saying he's improving so we are reviewing again. It's like they want to keep him in the hospital orrr, keep him out of an expensive nursing home because he is state funded and yet when I asked them last week, "dad's out of it, have you given him something to wipe him out so he's a quiet patient?" they denied it

So I can understand what you and the family are going through Faith. The way they work sometimes give the impression that the longer they are in hospital, the more damage it does.

We've told them to stop the anti phsycotic as it seems when he is restless at night, they seem to be drugging him so the staff can have a quiet night.
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There has just been an inquiry into this very thing at the hospital my OH works at. These drugs have to be documented and the reason for administering them written in the notes.
It is common knowledge that one of the night staff issues the drugs so that she can sleep on shift.
She got away with it as she said the patient was getting aggressive during the night.
 
Absolutely. Go out, laugh, get drunk, wake up fuck knows where and still laughing all the way through, heck yeah. :D
 
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