Hey guys, I've missed you...

[February]

Well, Dad is spending his first night tonight in the nursing home. It is literally across the street from the hospital so hopefully if there is a problem, they can get him right back there.

I still don't know the results of his CT scan. I heard there is another test they're going to do but I can't confirm it yet.

Ironically, my ex-husband had called to tell me he was going to see Dad tonight finally at the hospital. He gave Dad quite a pep talk about not giving up, and was actually there as the EMT's bundled dad up and took him to the nursing home.

In an ambulance.

That tells me right there that he still should be in the hospital.

My dad has always had a fear of going 'in a home' so tonight I feel like the most horrible person/daughter on Earth.

I have told him, time and again and as recently as Sunday night when I stood at his bedside that I physically cannot care for him now, and that I love him. So he knows this, it's not that I haven't explained it to him, and not that he doesn't know about my health problems.

He told my ex that he's supposed to stay at this place for 'twelve days' but I don't know where that figure came from. That's how long he was in the hospital.

I am relieved at least he's in a place with nursing staff but I truly believe he still should be in the hospital. I do not in any way consider his condition stable since they never explained the bleeding.

I don't know at this point if either of my parents are speaking to me. But I do know that I have done my absolute best for them all of my life, and it has never, ever been enough.

I'm not angry at him now for not seeking care- I'm not resentful.

I'm just sad :(

Thanks again for all the very sound advice and for listening. I hope someday that I can return the favor to you when you need an ear but certainly hope you don't ever have to deal with insanity of this magnitude.

love,
Bru

p.s. Hobie you sure said it right- that phrase has been ringing in my mind for a long while now.

[DisneyMom]

Bru- I'm glad to hear that you are hanging in there despite all the stress.
Susi is right, just keep loving him, (although you can vent to those who understand) and try to get some good in whatever happens next. I know that sounds like an easy answer, but it is really all you can do, and maybe it will bring you some comfort in the future knowing you were always doing your best for him and your family.
I'm sure he thinks the world of you, even when he doesn't show it. People are sometimes so mistaken in the way they treat the ones closest to them. It seems that the ones who were always trying their best always get the shaft, but please don't let the past ruin the days ahead.
Keep strong! We think you are terrific, and we know you wouldn't be discussing all of this if you didn't care so much. :)

[NessaMcTastic]

I do not in any way consider his condition stable since they never explained the bleeding.

I would keep pushing for an answer. My dad was in the hospital about 2 years ago because he was loosing a lot of weight, had a weird greenish pallor to his skin and then suddenly started to pass out. He was 77 at the time and prior to all of this the man never had a cold that lasted more than a day. (His remedy was to drink a whole bottle of NyQuil, smoke his 2 packs for the day and go to bed. :eek :)

The doctors couldn't explain it at the hospital and wanted to discharge him. They also noticed that his blood pressure was dangerously low and thought he "mysteriously" lost two pints of blood because that's how much they transfused into him.

Well after much hell raised by myself and one of my sisters, we found out that he was given high blood pressure medicine...when his blood pressure is normally a little bit on the low side. I started to google the pills he was taking (he was also taking insulin even though his sugar was fine!) and realized that what they help to control were not for a man with normal/low blood pressure and a working pancreas. I had to print it out to his GP before we even got an "oops" from him.

Keep pushing for answer or for him to be transferred to that better hospital.

(For the record, my father is now fine. His problem is that he's still trying to live off of his old diet of black coffee and smokes. My mother on the other hand has had the measles, the mumps (while pregnant!), had a tumor removed and woke up while in the middle of the operation and told the doctor not to stop, and has bronchitis because of Dad's 69 year old smoking habit. My parents are tough as nails.)

[hobie16]

The doctors couldn't explain it at the hospital and wanted to discharge him.

My step-son was born with a laundry list of problems including hydrocephalus. He had one ventrical shunted within days of being born. Three years later he started getting bad headaches and fainting, and then would be fine. My wife suspected the other ventrical may have been the cause but the docs disagreed.

He finally had a bad episode and was taken to Stanford. I arrived in time to watch a resident neurosurgeon tell my wife there was nothing wrong and observe her in the space of two minutes take the doc from GOD to, "Yes ma'am."

After a CT scan they agreed with her and he got a second shunt installed.

The moral here is medical science is not exact. Different docs have different opinions. Don't let any of them off. Keep hammering them until you get an answer you understand. You may not like the answer but make sure they're being honest and forthcoming.

You may also want to turn on your bullshit detector.

[felinefan]

Bru, you can't let your family throw guilt trips at you like they are. Your mom sooner or later is going to have to face the fact she has made horrible choices and a rotten attitude as well, and since it's too late to change that, she will have to spend the rest of her life with that. Remember the saying that when someone points a finger at you to accuse you of something, there are three more fingers pointing back at them. For every thing they accuse you of, I'm sure they are guilty of more.
You've taken care of your dad. You've busted your hump for years working and taking care of your family, in a superhuman way. If they don't appreciate that SCREW 'EM! If you haven't pointed out to them how much you worked and sacrificed for them and they don't appreciate that, well, then you might want to do that, but realize that you may have to turn your back on them awhile. If they call, tell them to not come by, call or write until they have grown up and learned the fine art of appreciation. Tell them to stop and think of what would've happened if you hadn't been there to help them out. If they won't, write them off until they come around. Sometimes you have to do that. Nobody can make you feel inferior without your consent--do not, under any circumstances, give them consent.
Focus on getting your BP down, and caring for yourself. If the doctors screw up with your dad, report them to the medical board.

Your dad says he's supposed to stay at the hospital or nursing home for 12 days? I hope he has his affairs in order--I don't mean to upset you, but he may be predicting his own death. I hope I'm wrong.

[Shorty82]

My dad has always had a fear of going 'in a home' so tonight I feel like the most horrible person/daughter on Earth.

Bru, don't feel bad about your dad having to go into a nursing home. It's not your fault he's there nor that he probably should still be in the hospital.

While I have always hated the necessity of nursing homes I understand they are sometimes the best place for somebody. Both my grandfather and mother had to live in a home the last few years of their lives. I hated the thought of them being there but I knew it was the best place for them.

Just be strong. It sounds like your mom and the hospital have both made poor decisions. Hopefully they'll come to realize so before it is to late. I hate to sound cold by bringing death up but if your dad doesn't pull through I hope the end will be painless. Remember, if he doesn't make it he'll be in a better place.

You might want to take Ralphie up on his offer to talk. While I barely know the man I do know he is a very kind person who has seen first hand what comes in the next life.

I'd like to say more but I've started crying so can't.

[Big Wallaby]

I've been fairly silent in this thread, but I want to give my support. I, for one, can only imagine what you've talked about that you've seen. Over the years, as I've lost so many friends and family to cancer, I've come to vehemently hate this disease more than any other. Doesn't matter what kind.

My thoughts and prayers are with you and your family, and I pray strength for you to get through these times. We are and will continue to be here for you.

I really can't say much more right now, or I will never stop. You've seen my posts as they normally are, imagine me getting long-winded. And this is the type of thing to do it.

More than that strength, I pray for peace for you. a peace that very, very few experience on a daily basis, one that... really can't be described, even by those like myself who have received and experienced it. It is not a peace that you feel so much as realize. But if you should experience it, you will know it and it is the greatest comfort there is.

Please continue to keep us updated.

[GaTechGal]

Bru,
Prayers coming your way. Don't feel bad about your part in the situation your dad is in. Much of it is his own making. You can only do what you can do. Now is he really in a nursing home or is it a rehabilitaion facility? Sometimes just the terminology make folks feel better? The 12 day figure may be the Medicare allotment before he needs to be re-evaluated. Also have your mom talk to the social worker about having the home health folks come to the house. Now they won't be there 24/7, but I think they can come every day for a period of time (maybe 6 weeks). Hang loose and keep being straight up with everyone about what you can and can't do in terms of care. Again we're praying for you.

[Figment76]

Bru, don't feel bad about your dad having to go into a nursing home. It's not your fault he's there nor that he probably should still be in the hospital.

I just wanted to echo that. And also the sentiment that you voiced earlier - you are doing what you can to give them the best care possible. My mom had so many fights with her parents towards the end of their lives because she was only trying to do what was best for them (getting them a truly wonderful person to provide live-in care), and they wanted no part of it. Being in the role of caregiver is a thankless, exhausting task. Don't let it consume you. You mentioned that you have brothers and sisters and that they could help. Have you called them and let them know it's time for them to step up? Also, see if there are any community resources and support groups for family caregivers. They may have some ideas and just provide some additional support for you.

Take care of yourself.

[DisneyMom]

Bru,
Prayers coming your way. Don't feel bad about your part in the situation your dad is in. Much of it is his own making. You can only do what you can do. Now is he really in a nursing home or is it a rehabilitaion facility? Sometimes just the terminology make folks feel better? The 12 day figure may be the Medicare allotment before he needs to be re-evaluated. Also have your mom talk to the social worker about having the home health folks come to the house. Now they won't be there 24/7, but I think they can come every day for a period of time (maybe 6 weeks). Hang loose and keep being straight up with everyone about what you can and can't do in terms of care. Again we're praying for you.

If he did go home, be aware "Home Health" is different from Hospice. Most people do not understand the ideal of hospice which if there was a worsening in condition, you could go back to the hospital, but your hospice program would terminate. In general, hospice provides more services than home health. Another misconception is that hospice means you are going to die immediately. The MD may predict 6 months or less prognosis, but many patients last beyond that, so long that they come off the hospice program because they are still going strong.
My impression is either program relies heavily on the family providing the majority of care. Hospice may provide some respite care in home, but I believe it is not usually a majority of care over a long period of time. The are some hospice facilities for respite care. If you can, call your local hospice provider and find out the exact details ahead of time.
I'm sorry I can't tell you more, but I was never a hospice nurse. I did do home health for many years, though.