Mandi - I'll try to answer your question about a home nurse. Unfortunately, the answer is "it depends" - basically on the type of insurance that Dennis has. I can't remember how old he is, BUT if he is covered under Medicare, and is certified as being "homebound" which means he really is not capable for leaving the house to do normal things (go to church, go visit people, etc), then yes, Medicare does allow a certain number of visits per week for both a home health aid and a nurse (and even a Physician therapist if he needs that. However, if he is covered under a private insurance plan, then it would depend on your insurance coverage, and you'd need to find out.... Hope that helps a little.

P.S. - please do find out as I know this must be overwhelming for you. You need some help! You can also hire a private company that could provide a home care worker that would help with some of this - I know when my father was ill, and came home, my mother was in no shape to be able to provide the type of care he needed, and since my sis and I both work full time we helped find a wonderful woman who came in every day to help with my Dad....

sorry you are both going through all of this, and I hope and pray for you that things can start improving soon...

Dear mandi ,it really is overwhelming and very scary isnt it.I cannot give you any advice because your healthcare system is so very different in America and your situation just doesn't arise here,as home nurses and particularly cancer specialist nurses are all provided on our national health service.They were absolutely invaluable to robin and i in the few days between his terminal diagnosis and his admission to the hospice,even coming out at 2am one morning when Rob had a morphine toxicity episode.
Take care Mandi i will be thinking of you

love liz

Just thinking of you mandi and hoping you get the support you need.

Brenda

HI, Mandi, you are right on - you can't do this by yourself for a sustained period of time and retain your health or your sanity. What is your Insurance situation? A good Ins. Co. should cover Home Health care [and visiting nurses and even aides, for a period of time.] My husband was not on Medicare, so I can't speak to that. Don't try to fool yourself into being Superwoman- it isn't doable at the level of care your Dennis needs right now. Wishing you the best going forward. Amy in the Ozarks

When Dennis came home last weekend, an RN was supposed to be here to attach his wound vac.

This guy pulled out the instruction booklet and proceeded to "wing" it, like someone chasing wire on a new stereo system. He didn't have a clue.

Thank God, they took out DJ's pic line before discharge, because he was supposed to teach me the care for that, but told my sister-in-law ( while waiting for us to get home.....YES, we had a flat tire trying to get here from Baltimore) that he had no idea how to deal with a pic. My brother-in-law is in remission for leukemia, so, thankfully, if it had been the case, she could teach me.

This dork finally did (after 5 hours of reading the manual) a dressing that held all of 12 hours. Dennis came downstairs the next morning and the tube fell off. I called at 10 the next morning and another RN finally showed up at 9 that night (with her BOYFRIEND!!!!.......dressed to go to the bar) only to tell us that she didn't know how to do a wound vac either! Dennis got pissed..........took over and put his own dressing in place.

Fast forward 8 hours......he woke up soaked in his J-tube feeding. This was the second tube installed, since the first balloon failed in the hospital. He spent the next 12 hours in the ER.

They released him, and I had to take him back to Johns Hopkins the next morning. Another week there, and then to the nursing home.

Now, with the insurance being what it is, they don't give a crap that his diet has changed. He's lost 30-plus pounds in the last 6 weeks and a higher nutrient Jevity feeding was ordered, but they want me to "simply" double up on the Jevity that I've already been given. OK............now he is hooked up 8 hours a day just trying to get the minimum of nutrients that he needs.

I will be putting on my BITCH BRITCHES in the morning, and lord help whoever answers the phone. I don't give a crap anymore.

I'm here fighting tooth and nail for my husband. Where are all the other people who don't have caregivers? Not many are with us, I'm afraid.

Love,
Mandi

Jeez Mandi
if only you had the time and the energy,sounds like a bit of Petey like screaming is due.Local press or TV to take up the gauntlet on your behalf and kick some butt about the poor levels of home nursing available,and the mindfield that seems to be involved with health insurance.

I will never complain about the National Health Service again,and am thankful every day for The Macmillan Cancer Nurse Specialists who provide home care services for patients AND their families.

liz

Your Bitch Britches..................I like that one. Put them on tight Mandi and go after them.

Love,
Minnie

I'm gonna get me a pair too.....I've got a fight with my insurance company coming up, and I'm gonna be dressed for the battle in my b.britches. yeah!

LOL, before you put on th b. britches put on your calm rational side. Insurance companies do not like the expense of emergency room visits or re-hospitalizations. In addition to the expense, there is a risk of additional infections and cross contaminations.

In many situations, those are much more costly than in home nursing care. My insurance company was very accommodating when I requested some in-home assistance. I am sure it was for the reasons above.

Now, if you try to rationalize with them about how he is going to end back up in the hospital and if you don't get some help...then, put on those b. britches and go at it. :-)

Our insurance company assigned us a case manager, she was amazingly helpful. To us she was very kind and accommodating, although I'm sure her job at the insurance company is to prevent ER visits and hospitalizations.

If you have a case manager, start there. If you don't...just explain the situation and that your concern is that he is going to have to return to the hospital or the ER.

I'm sorry your journey has been so rough...for both you and Dennis. I've got your family in my prayers.