Infection again

[sammy90210]

Hi

My dad is in late stages of PSP - he acquired an infection again (the last time it was a chest infection, the docs are not sure this time) - I understand it varies from patient to patient but how many infections should a patient fight? He has had 2 anti-biotic courses in the past 5 weeks - 5 days of Cefspan via PEG tube and 7 days of Mereponem 1gm via IV...

My dad is super-weak, his stomach is sunk in, his buttocks are sunk in, his arms and legs have very little meat on them... he can only sip a bit of water and semi-solid foods are a problem too - his cognition is now so poor that he has problems with understanding and replying to straight yes/no questions...

A bit of history and some details follow...

My dad has been pretty much confined to the bed since last July - he had a PEG tube placed in and his carbidopa/levodopa was stopped to reduce terrible leg spasms and he became near-vegetative - in Oct, carbidopa/levodopa was restarted and he starting eating/drinking/communicating again - on the advice of the neuro and palliative care docs, we left the PEG tube and used it only for meds and water, to prevent dehydration

In Feb this year, he developed a nasty chest infection and took Meropenem 1gm 3X daily via IV for 7 days - he was hospitalized for a day but he starting going into severe depression so I took him home and had a nurse help with the infusion

2 weeks ago, he started having a cough again and 1 week ago he recovered, eating/drinking a bit and I even took him out on a drive in the neighborhood - 2 days ago, he had a cough/choking attack and his oxygen was low so I decided to take him to the hospital again.. he stabilized a bit so I decided to postpone and had his blood tested - the results indicate that he has a nasty infection - his white-blood-cell (WBC) count is almost 31,000 and the normal range is 4,000-10,000 - this shows his body is trying to fight a very bad infection - the doc checked and his urine is clear and there is no apparent chest infection

Tomorrow I plan to go do his own doctors again and seek the next steps - my mom, sisters and myself are all against going the anti-biotic via IV route again - his veins are in very poor shape, the last time he had to be pricked 6 times - twice his injection jumped the vein and starting leaking into his muscle which swelled it up.. wasn't painful (I am told injection leaking into the skin is excruciating, but it doesn't hurt if it leaks into the muscle, thankfully) - the docs say that anti-biotics into the stomach are not very helpful...

[easterncedar]

Dear Sammy, I have read your posts over the past half year with sympathetic interest. You have been fighting hard for your father, and he has suffered so much. He is lucky to have you. The question of when to stop fighting is perhaps the most harrowing we face. My guy's GP brought it up very early, so I have had the chance to consider it. I hope I will know the answer when the time comes, as I think perhaps you do. Wishing you strength, Easterncedar

[sammy90210 in reply to easterncedar]

Thank you very much for your kind words easterncedar - I talked to 3 of his regular docs - one insisted we bring him into the hospital and have him hospitalized for 2/3 days - the other two were non-committal, they suggested OPD checkups - in our culture (I am from Pakistan) it's taboo to consider that there is a time to let go and not prolong the suffering - I just expected doctors to be a bit more pragmatic and at least offer options...

I described the situation to my mom too and shared yours and other people's kind advice - I will see another one of his docs who runs a small hospital nearby and get his advice on comfort care - they have doctors and nurses who can visit at home... will update later - thanks again

[easterncedar in reply to sammy90210]

I'm thinking of you and your family this morning, Sammy, here on the other side of the world. I hope you are able to get the kind of help for your father that you and your family think is best. Love and peace, Easterncedar

[sammy90210 in reply to easterncedar]

thank you very much easterncedar I talked to a doc who has a small hospital nearby - he treated my dad for a UTI 2 years ago - he specialized in geriatric care in the US - he remembered my dad and looked at his video and listened to the situation - he said he understood my perspective - he said it's actually difficult when a patient is in very bad shape but their family insists on prolonged and painful interventions... I wish comfort and ease for my father... and strength for our family... yours and others' kind words mean a lot, thanks again

[Jessicajane66 in reply to easterncedar]

So after all your thinking what conclusion have you come to?

When is it time to stop fighting?

My Mum (like Sammy's Dad) is in later stages of PSP and has had numerous bouts of chest and urine infection and aspiration pueumonia.

Mum is the one doing the fighting. I guess she will stop when she is ready to go. All that we can do is make her as comfortable as possible.

As Mum can no longer communicate in any way at all I just worry that she might be in pain and unable to tell us.

Any ideas welcome.

[sammy90210 in reply to Jessicajane66]

Hi Jessica

I would recommend making this a main post to get better feedback

Regardless of your decision, please make sure your doctor agrees with you and proceeds as desired - in some cases doctors tell the patient and their loved ones that they won't treat the first infection after a certain stage - in other cases, they want to treat every possible infection until renal failure or brain death - in my dad's case 2/6 doctors suggested not to continue treatment after the 4th infection - even in hospital, his main neuro insisted to put an IV in his swollen hands and feet - and other than one doctor they were giving me the impression that I was trying to get rid of him - eventually, his medical specialist was honest enough to say that this is the end and all this intervention is useless and will cause unnecessary pain - so we brought him back the same day and he passed away 2 days later, in peace, at home

in case you do consider stopping treatment, i would suggest:

- ask your mom and ask her if she wants to stop treatment - tell her very clearly this means it will be the end but your doctors will try their best to prevent or reduce any suffering (using morphine etc) - I am guessing she is at a stage where she cannot respond or understand....

- discuss this among your family

- ask her main doctor or find another doctor who sympathizes with your approach of halting treatment - if he doesn't, he will try his best to stick needles and give heavy anti-biotics till the very end - otherwise, he may switch to painkillers and fever-reduction medicines and only mild anti-biotics

There is no easy and straightforward answer to this - e.g. regarding PEG tubes, I met 2 doctors, one regretted putting a PEG tube into his own father towards the end, saying he thinking like a doctor only - another was happy she put one in her mother-in-law saying "we couldn't just let her die"

Best wishes and do keep asking here, we are all here to help as best as we can

[Katiebow]

My thoughts on this are 'How much should a person have to endure such treatment?' I am of the belief that there comes a time when you should let nature takes its course, I know if it were me in your father's position I wouldn't want to be kept going to face yet more treatment. The main thing that would concern me is that I would be kept as comfortable, pain free and with people I love. My husband,Ben has PSP and has indicated that he doesn't want extensive treatment especially as the disease really gets a grip. It is such a hard a personal decision and one only you as a family can decide. Kate.

[sammy90210 in reply to Katiebow]

thanks very much Katiebow - my father was one of those rare full-of-life people - he somehow managed to always be the center of attention without being one of those annoying people - I wish I had been brave enough to discuss this with him before but I think after 3 anti-biotic interventions in the past 6 months, even he would say enough, if he had the cognition - I will discuss with his doc and my family - I will update here as well, for future reference of anyone in my position

[imli]

I am so sorry to hear about your Dad. Sometimes, we have to let nature take its course. I wish there was a cute for this Seeful disease. I lost my dad to PSP six months ago.

[sammy90210 in reply to imli]

I am so sorry, it's a terrible disease...

[imli]

Ps I just read the reply above mine and see that Katiebow used almost the same exact words.

[Doglinton]

Its really hard for all the family, I know. My husband and I talked about this regularly and we are in agreement that when the quality of live is nil it is time to let go.

I hope we will know when that time comes.

You have all fought a long battle.

Our thoughts are with you all.

love, Jean x

[sammy90210 in reply to Doglinton]

thank you very much jean - I wish the best for you and your husband too

[mthteach]

Sammy90210, Many times the body will build up a resistance on its on against the antibiotics that are given to help. I agree with the others. There are medications that are there to help, buy sometimes we have to let our loved ones be at peace. Best wishes for your dad. He is in our prayers.