Hi Lynn,
Oh, how I can relate.
I was thinking, if you were to say those exact words to your doctor, hopefully you can get something to have on hand to help cope when things get real heated. Not trying to be a pill pusher, but when I feel my nerves ready to explode, it's good to have an anti anxiety med on hand to help with the physical part........I'm thinking of the times that I've been to the brink and would start frantically pacing, ready to pull my hair out...and needing to use BIRTHING-TECHNIQUE breathing to keep from losing it!!

I too get tired of people saying 'in your head'....and doctors pushing stupid meds (that all seem to have to take 4-6 weeks to show effect).......
I don't want to have to keep trying different meds that need to be taken EVERY day for the 'in yer head' stuff.....(altho i have taken Wellbutrin on and off for the past 15 yrs ) but my point is: it's good to have something ON HAND to take IF NEEDED WHEN things get to be 'too much'.....

Do you feel you can talk like this to your doctor? Straightforward, just like your post?

The other posts here seem very helpful as well, especially for the practical stuff, the 'little things' which could invariably add up to be a huge help in taking some of the weight off your shoulders.
Ex: my pharmacy delivers meds.....
I too would check in to community assistant venues.......it wouldn't mean you don't 'care' for your father......it would be just what it's meant to be ....to help take the load off of hardworking family members.
Who knows, there are all sorts of volunteer-type of services where people will reach out in ways to help people such as your father, who are homebound and lonely.
Local churches perhaps.....?
Sometimes just getting the word out somehow is all it might take to get someone to realize your father is in this situation and could sure use a friendly visitor with a meal.....
We have a service thru our local hospital called 'meals on wheels'......free.

I really feel for you. You aren't getting the support you need.
Thank God for this forum
It's sure been a saving Grace to me!!

Truly Caring
Rae

My son was in an accident and is now a quad in a power chair. The family was in a great deal of stress as he had to be taken care of round the clock. He had to be catheterized every 4 hours. He was in and out of hospitals every 6-10 weeks with urinary infections
We found that we eventially had to create a situation where he was admitted to a nursing home and then stayed there until all the Medicaid home services were in place. Then he came home to live with daily services taking care of many of his needs. This took a great load off the family. Eventually a supra-pubic was put in place.
All this had to be done before he came home, to have the services he needed, taken care of by medicaid and other services.
If all your Dad has is his SSI or SSDI, he should qualify for many different services and programs. You need to contact an assist service to help you out. Legal Aid can steer you in the right direction. So can SS.
Also, if your sister-in-law doesn't work-she should donate some of her time to helping her father-in-law. After all, she's now a part of the family. Sounds as if your brother and his wife are being selfish and not handling the part of the load that they should.

When my father was in the nursing home, I was in the process of getting medicaid it took a awhile because of some assets that were putting him over the limit. When you can't have more than $2000 in assets to qualify it makes it kinda hard. I also had to prove he did not qualify for VA benefits like pensions and that stuff, that was a stressful and long situation at the VA office. When I finally had medicaid pending the nursing home got tired of waiting because of the time it took. And not knowing if they would back pay to January when his medicare payments stopped. So they decided they were not going to let him stay any longer. Three weeks later after he went home medicaid approved him from the begining of January when medicare stop paying till the end of March when he left. What is wrong with this picture, it was a complete nightmare. By the way I did have an attorney helping me. That was also a waste of time, even with them talking to the nursing home and medicaid that did not help. The attorney could not understand either why they made him leave when it was filed and pending. Great system we have.

Your situation is truly nightmarish. Given your father's condition is so serious and he needs so much care, have you access to a medical social worker in either a nursing home or local hospital? If he/she knows their stuff, they should be able to work out the game plan for him so that he gets all of the services he should. That's what their profession is all about - helping people who are in medical need.

Sheltiemom

Some of you have such difficult situations....anything I can say is pretty useless....but, my two cents is this; I admire all of you.

ABSOLUTELY!!
Thinking back, one of the greatest assets my son had was the medical social worker in the hospital and in the nursing home. They paved the way for everything to be set in place and kept him where it was needed when he had to qualify for home services.
Its a screwy system, but once the patient is home-its almost impossible to get the services that they're entitled to - at home. Ya gotta be in an institution to apply, and wait for authorization before going home..

Looking back at your post Lynn....I think your situation is unreasonable even without the PN! Some one has to compromise....you have done more than your share. Even a healthy person would keel over in your circumstances. You just can't do it all, alone.

For what it is worth Lynn I agree with Cyclelops, you are the one needing support - just because you have this unseen disease you are being treated as a healthy person - if you had an open wound that people can see then you wouldnt be expected to do half as much - have it out with your brother and his family, they need to help you.
Take time out and look after yourself