So we had the "make him comfortable" speech today...

[LaydeeBug]

because so far, Dad has been adamant...no more trachs. But tonight, after I spent some time with him and our consciences, I asked him if he'd get the trach and come home on the vent and he said yes.

I was shocked.

I still am a little.

Anyway, now I need to know how to set it all up, if I can. The social worker said it wasn't impossible, so I am willing to try.

Someone mentioned a military program that helped with stuff like this. The doctor was clear to say this would be home hospice.

I am coming around to being cool with that. If he has weeks or days or months, I want them to be in his own home surrounded by his medals and his family.

Any advice would be greatly appreciated.

[phleshdef]

1. In my experiences, some kind of hospice care can and will set all that up.

But there may be coverage issues. In the cases I've witnessed (step-grandfather, father, great grandmother, friend's dad) Medicare or Medicaid, and in one case Tri-Care, covered those things. With Medicaid, I guess it depends on the state. And if he has private insurance, depends on their rules. But if the doctor will certify your father for hospice, it should be good.

I'm very sorry for what you are going through.

[winter is coming]

2. K&R for visibility. Sorry I can't be more help. n/t

[ancianita]

3. Maybe I sound weird, but reading Ram Dass' latest book on death and relationships was helpful for a

similar situation I went through. Maybe you have the time, maybe not. But reading it is comfortingly informative, like being with a softly brilliant, kind, matter-of-fact person. It strengthened me and helped me really "be" with my loved one. It's called Still Here.

[Drew Richards]

4. My dear dear sweet laydeebug I have a few pearls from my own exp with both my parents. RIP...

1. Make sure to keep it low stress low drama around him ALL the time...nothing hurts more than being helpless and having to watch family drama...if someone cant handle that throw their asses OUT of your home just please not in front of dad wait till you get them in another room explain the rules and the consequences.

2. Comfort is more than physical. His body is going but damn it his mind is probably still working...
nothing is more depressing than being physically comfortable and bored to tears because all you have to think on is the pain and the end. Tv for some...but books on tape or reading to him, cards backgammon ...maybe his old favorite westerns of Louis LeMoure for example...

3. DON't HOVER...nothing is more exasperating than someone hovering all the time...give him space and yourself but remember ALWAYS check on him like clock work same times ALWAYS! And the routine itself becomes a comfort to you both.

4. If you are not qualified or comfortable with the level of care you must give...DON'T JUST TRY TO DO IT! get some professional nursing help hospice daily visit care or if you afford it In house care...

I speak from experience...while I am highly intelligent and made a point of getting medical training for the care I must preform it is horribly emotionally and physically draining on mind body and soul and ONE person can't do it....i spent 6 years sleeping 2 hours a pop maybe while taking care of one and then the other...by the end...i almost died and 2 years later am still physically damaged and recovering...literally I destroyed my health taking care of them alone...

Finally and most of all, you must have help and support, financially, physically, shopping, cleaning, washing and.....MENTALLY...for both him and especially you...i'm sorry I cant write any more i'm laying here crying my eyes out for you and what you are taking on as I did, while I have staples running up both legs from my thighs to the top of my chest...this is what doing it alone will do to you if you are not careful to take care of yourself while taking care of him...

Don't try to do it alone...noone can do 24/7/365 every waking hour by themselves without it killing you...i am luckily living proof...

Love you. I will always be here to talk to just pm me...

Peace be with you.

Drew.

[Demonaut]

6. Drew..I am in awe of your stamina, I truly am, wow, I could not imagine doing what you did for years

what I did in a few months with many to assist....wow

[Drew Richards]

21. My parents were very private they refused nursing and home hospice care so it was really no choice

Even though it broke me I would do it again with the exception that I would over ride their objections and tell them either I need hospice help or they can't die in their own bed...that sounds callus but it was really overwhelming trying to provide the level of care they each needed near the end and still maintain the normal day to day chores that make a house a home and not a hovel.

But, love conqures all, and they are at peace.

[polly7]

9. This is a great post.

You're an angel for doing what you did and I hope your own health continues to improve. It absolutely can be physically and emotionally draining, the pt./person being cared for will notice and often feel tremendous guilt if/when they see a caregiver's health decline in a home setting. Definitely, asking for help and support is so important for everyone involved.

[alittlelark]

14. .....

[nadinbrzezinski]

16. Might I add one point

Take care of yourself and take time for yourself.

It might sound awful selfish, but it is critical to take care of one self. This might mean going out for coffee for a couple hours. But this is so critical.

[Demonaut]

5. I did this with my father a year ago...it's tough and an honor

be kind and patient...that will come naturally.
get a bed that can be raised...hospice is absolutely amazing in their assistance.
figure on making a schedule that works for family members to assist...you cannot handle everything
yourself.

be yourself, your father helped bring you into this world and now you have the honor to assist
him into the next.

I wish you and your father the very best.

[alittlelark]

7. Make everything, at all times seem 'Normal'

...just the way it would be any other day... Talk about stupid stuff, chat, talk about dinner... whatever was the normal routine should be kept up as much as possible - in every little way you can think of That's why they're HOME.

[Drew Richards]

8. Absolutely a very important point thx for posting it.

[alittlelark]

12. We all still griped about the neighbor to the North of us...

she was rude and they had tree/fence issues for years ... he was so animated and happy when we did... lotsa other little 'things'.... that's why they are HOME.

[polly7]

10. LadyeeBug, you're doing a wonderful thing.

You've got some great advice here, I wish you and your Dad all the best.

[JDPriestly]

11. I wish you blessings and peace in your days with your dad.

[grasswire]

13. don't forget music

It truly is therapy.

[No Vested Interest]

15. Music - especially of his choosing and era.

If he enjoyed lively music he may move and otherwise react physically to it.

(You said "trach" so I'm assuming he may not be able to speak or sing).

[gwheezie]

22. My f-i-l died listening to Ella

We had him home for 2 years with advanced dementia, it was a long 2 years but when he became more and more detached from living, music helped calm him and my dog, who would lay down with him, she actually kept him from rolling out of bed and if he got up to wander, she would come get me. Funny story, he was not a dog person, and she is a pitbull, but he would lie with her next to him and pet her and say "what a nice cat". The hardest thing was not to call 911 when he was actively dying but I am a nurse, my husband is a medic so the dying process was not what new to us but to uphold his wishes was difficult the last day.

[grasswire]

23. I hope someone plays Ella for me...

...when I can no longer do it for myself.

[awoke_in_2003]

17. When I die...

I would hope to be at home, in my bed, where I am comfortable. Just my 2 cents.

[snot]

18. As one having lost both parents,

Best advice I've got is,

Carve out quiet time for yourself to imagine yourself in his place. You can't know him perfectly -- none of us even knows ourself perfectly -- but you know him better than most people.

Imagine: what might make him feel better.

Here, e.g., is what I wish I'd done -- stupid little thing. My dad was an asshole and in total denial. I'd come to terms, and whole-heartedly believed that he'd done a decent/tho' awful job as a parent, given what he'd suffered, the cards he was dealt -- though I think I can fairly say, calling him an asshole is putting it lightly. Whatever. What I most regret now, trivial though it may seem, is: I could have brought a washcloth and some witch hazel to the hospital, to soothe his brow, because the f-ing hospital was totally oblivious. It might actually have helped his physical comfort, and it might have helped him and me both, to have experienced that expression of care. And I didn't think of it 'til it was too late.

I guess point being that it's ministering to our/others' emotional needs, our/their hearts, that really matters. That's what I need most, anyway.

[shenmue]

19. ...

[littlemissmartypants]

20. Hopefully you will find some earth angel like yourself in Home Care that will

Care that will be there empathetic and knowledgeable. He has made his peace with passing. The hard part is going to be engaging all others involved in the respect he deserves.

It is his death. He should be able to have it on his own terms above all. I have seen deaths as a direct care provider. The hardest part is letting go. It should always be lead by the person who is passing and followed with peace and respect.
It can be a beautiful thing even as difficult as it is for those of us who are left behind.

Thank you for being a living example of love for us.

Love, Peace and Shelter. Lmsp

[LaydeeBug]

24. This is so sweet, I can't even tell you

I am not sure what resources are available, but I know that I cannot afford $7500 a month for round the clock nurse care.

I will have to do some of this myself.

i will have to do most of it by myself.

[gwheezie]

25. I don't know if this suggestion will help

but years ago when I was in nursing school, I took some private duty cases. I didn't go through an agency so it might be risky to hire someone without background checks etc but I wonder if you put up a flyer at a nursing school if you might get someone willing to even help you a few hours a week so you can take some time for yourself.At least you could get a reference from an instructor. I would not expect that person to be able to do complicated medical care.
There was one case I had when I was a student and the wife rarely left the house even though I was there but I helped her with bathing him, giving him meds,feeding him etc and it gave her time to take a nap, cook something for herself, clean her house, have friends and grandkids over to visit. His passing was very poignant for me, I had put him to bed, bathed him, called the doctor to discuss the morphine not holding him and got the doctor to call in another prescription to the pharmacy, his wife went to pick it up and we talked about the end being close and her goal was to manage his pain and keep him home. So usually I left at abut 8p but stayed until midnight so she could take a nap. I went out to a club after I left and drank and danced for a few hours, when I got home my roommate said that lady called and she thinks her husband died. So I called her and she wanted me to come right over, I didn't bother changing and rushed to her home and yes he was dead. This was back in the day when only a doctor could pronounce death before living wills,so I told her to call ems so he could be taken to an er and be pronounced, which she did. For some reason ems, the fire dept and police showed up and she would not let any of them touch him, she wanted me to prepare him for transport. Whenever someone asked who the heck is that girl, she said proudly "that's his nurse" Mind you I was dressed in a mini skirt,had white go-go boots on {it was back in the day} and reeked of pot. I drove the wife to the hospital and I called the funeral home for him and then went back to the home and stayed until the rest of the family could come to be with his wife.
I tell the story because even if you can't afford a nurse or cna for round the clock care, if you can find someone to even give you a break to do other things around the house, read a book or listen to a program you like, or take a nap, or take the dog for a walk, or talk to your kids or spouse, it can be a help.

[LaydeeBug]

26. This is a great idea...thank you for your story

Dad will have a g tube and require trach care (suctioning). He breathes on his own, but the suctioning requirement is the thing. I am going to insist on a home vent anyway, just to give him a break now and then.

He has some bedsores now too.

Those are his "things". I don't know if that's too complicated for a student or not.

What do you think?

[gwheezie]

27. It will depend on the student

Many nursing students these days are cna's going for their rn, or emt's going for an rn. Some students may have a license already for some other kind of healthcare job, some of them may be worried about their liability if they don't work through an agency. I didn't much worry about it. I had been a nurse's aid for 8 years before going to school, I had trach pts and gt pts in the nursing home where I worked prior to going for my rn. I did have a private duty pt with a trach and I had to suction him frequently.
I think you will be able to get some kind of agency licensed help, take advantage but if it is not enough, having someone come and help you even if they aren't completely responsible will save your back if you have to do a lot of turning for the bed sores. The attractive part of the work I was doing was I didn't have to pull 8 hour shifts, most of what I was doing was filling in after the agency staff left, I'd spend about 4 hours at the homes. So there was a licensed person that had some responsibility over seeing the care but that person didn't come every day. If you get an agency person that is covered by whatever insurance your dad has, they should be able to do the bulk of the bed sore and trach care but he will have to be repositioned, the proper equipment is essential. Suctioning is scarier than it looks but everyone will have to be able to do it if they are going to be alone with him. Also do not let them discharge him on a friday, you need someone in place the day he gets home. You can't wait until monday to have help arrive. I'm a nurse and even though my husband is a retird medic, when I came home from one of my surgeries and required agency help, nothing was quite in place and it caused undo stress for me and my husband. I live in the woods, they couldn't find y house, there was a mix up with insurance and my oxygen etc I didn't panic because we somehow muddle through, but my O2 wasn't there, I was unfamiliar with the pump I had and even though I took care of it in the hospital, I forgot a few things because I was so anxious about being home. By day 3 everything was cool.