Living with Als in a third world

[greekgirl]

Hi

My father in law is now a year down the line with ALS. He lives on the Greek Island of rhodes. There is no medical support and no equipment or kit/ gadgets to make use of.

He is confined to his room in his home. With breathing machines, trachie and feeding tube.

He hasn't been able to communicate since last November and movement is okay in one hand. Face and eyes move well.

He doesn't sleep. I did the night shift last night with him and noticed how noisy the oxygen machines are and also they have a glow from screens.

Thankfully the state did provide the hospital bed and mattress. Other than that it's down to his family to figure out best care and his wife is on 24 hours.

I'm only here for a few weeks as we live in UK. I've searched the island for a nurse to at least help a few hours a week but they are thin on the ground.

I think we are on our own, totally.

I've tried various apps on the iPad where he could use his thumb to hit a yes/no button but he doesn't seem interested anymore

Please can I have an idea how I can best help a family with absolutely no financial resources and no access to medical care. He was in Intensive care jan, when the trachie was put in without I doubt his consent. Here in Greece you have a limited time in ICU before your turfed out. This is my third world reference.

Right now a way to help him sleep is a priority. Watching him stare into space between 11pm -6am with no restbite has to be stopped.

This man needs help. I love him dearly and I'm crying out for him.

Any suggestions how he can live more comfortably with such limited resources.

Thank you for listening

 

[Atsugi]

Greekgirl,

My sympathies to you, your FIL and mother. That's a tough situation.

To help sleep at night, I taped a cardboard "lid" over the bright screens so I could lift the lid to see the screen, then put it back down to reduce the brightness.

To help quality of life, perhaps the doctor would consider an antidepressant during the day and a sleeping pill at night.

 

[MaxEidswick]

>To help quality of life, perhaps the doctor would consider an antidepressant during the day and a sleeping pill at night

Ditto Mike's comment, some help ought to be available through Greek NHS. Or perhaps the UK NHS -- is he an expat?

 

[greekgirl]

Hi thanks for suggestions so far I'm going to def try cardboard lid.

Anything else greatly appreciated. He's Greek not an expat. He's in the Greek village he wants to be in so there is that!

Many thanks

 

[zoohouse]

I am a nurse, and I know that many are very territorial about who can and who can't care for patients, but I know that if a person is comfortable around the sick and body fluids, anyone can be trained to do this type of care. Your mother in law in not a nurse I assume and she is doing it. Most CALS on this forum are laypeople yet give exceptional care to their PALS. Good hygienic technique can be trained to some one who is interested. I have truly believe this, so much so that I have gone to Africa to train people in isolated villages. Do your in laws belong to a church? There are many in our church that have offered to make a schedule to come in and help when we need it, and they do not expect to be paid. These are just some options. You will be in my prayers.

Paulette

 

[greekgirl]

Thanks Paulette

In terms of sleep he's been prescribed 0.5mg of zanax. It's not working though he still not slept.

Anything else recommended for sleep, he looks shattered @ mo.

He won't have anyone from his village help care for him - these are his wishes so I'm trying church groups in nearby villages next!

 

[SMP51]

if help has been offer try adding it in little doses so he can get used to the idea of someone other than your mother CAN help care for him. ther is always an excuse for a SHORT period of time that "oops" happened to fall on time period were more than just "watching" him goes on. Trust is built in small doses.
your mother needs it for her health! or she wont be able to care for him eventually at all and he will have no choice in the matter. he is not unintellegent, he would not want a shattered wife.......speak with him honestly adult to adult with love