I am amazed every day that my parents made four people in the exact same way and that those same parents also raised those four people, yet those four people couldn't be more different from eachother in every way there is possible.

My 87-year old father fell in his home and suffered a traumatic brain injury on January 25th. What we have left is basically an infant. He can do nothing for himself except breathe. And most of the time he is on oxygen due to having COPD for years. He spent 25 days in the hospital, had two surgeries to remove fluid causing pressure in his head, and was discharged February 18th to a rehab facility in a local nursing home. I have questioned many times since that day just exactly what we are rehabbing to. The permanant brain damage is extremely evident.

When he was stabilized in the hospital, they informed us that they couldn't keep him forever. And in order for any other facility to take him, he'd have to have a PEG or a feeding tube. (The injury has caused him to lose his ability to chew and swallow. He's had no oral nourishment since early February.) We felt like we had no choice at the time but to have the PEG put in. So now, he's been in the rehab center (all therapies have ceased as they made no progress) for 58 days. He cannot walk, he wears diapers, he cannot eat. He just lays in bed. He takes a medication called Provigil which is a psycho-stimulant much like Ritalin to "wake him up" or he'd sleep all the time. When he's "awake", he's not alert or aware. They put him in a wheelchair (it takes two of them) and wheel him down to the common area by the nurses station where he watches everyone else eat. Then, when the medication wears off around 1:00 p.m., it's lights out. You can't rouse him he's so exhausted and he sleeps the rest of the day. The staff at the nursing home is wonderful to him and he's gotten excellent care, however, in my opinion he's going nowhere and has no quality of life. The nursing home is milking the 100 days of Medicare without counseling us on what we should have ready for Day 101.

Dad made me his health care representative in his living will and his Power of Attorney. I have spoken to his elder care attorney and he advised me of our options ~~ the first of which is what he said he'd do and that is call Hospice and have the feeding tube removed. I have to agree with him. It is what Dad would want. I have to be his "voice" since he doesn't have one.

Now in comes the family dynamics. I made the promise that we all ~~ my siblings and I ~~ have to be in agreement to have the feeding tube removed. If one of us doesn't want it, then we won't do it. My oldest brother says that he "won't sit and watch Dad starve to death". This brother is being selfish, I think. He wants Dad here because he's not ready to let him go. Dad would want to go be with Mom. He wouldn't want us to drain his finances to pay for his care. He wouldn't want to lay in a bed and have people change his diaper. We are at the point where we need to be thinking about selling his house, his car, etc. But this brother wants to hold on to everything. I really think he thinks Dad will get better. This morning he said to me on the phone, "If this was your child at Riley (Hospital for Children in Indianapolis) with a brain tumor, what would you do? Would you disconnect their feeding tube?" In my mind, it's not the same thing. Dad isn't a child. He's an adult with a serious injury that has a lived a long, full life. Am I out of line here? Today was the first day since all this started that I just wanted to quit. I wanted to hand it all over to the other three and say, "I'm here when you need my signature. Until then, don't bother me with it."

Has anyone out there been in similar circumstances? What is the right thing to do??? I'm at a total loss.

Debra, Big double whammy. Your Dad is responding to questions, He has a mind still and is not a vegetable. Can you ask him about the feeding tube? That would be very hard to do, and I am not sure I would have the guts. Your bro has seen that your Dad is totally helpless but can "speak" his needs and wants. What will your Dad say, if asked, with your brother present? I realy don't know if I could bring myself to ask that of my Mom. So if you can't, I understand.

Darn it, {{Hugs}} to you. I am glad to know that your older bro did show up. Not at all sure how that will affect his opinion.

Hi Debra... Sounds like your brother was having the "deer in the headlights" reaction... He needs to spend as much time (or more) as he can stand WITH your fathr so he can SEE and absorb what has happened to his daddy. Once he does, he'll "get it." But staying away and not exposing oneself to the realities of the situation will allow him to shield himself from the pain of seeing his father in such a difficult condition. We do ourselves no favor when we refuse to confront such difficult scenarios. I have faith that if forced to confront his dad's condition, he WILL see for himself and reach an understanding between his heart and his head.

Glad you are taking some time for YOU!! It's not luxury, it's essential! Glad the weather is cooperating with you today because every bit of "good" stuff we can absorb helps us through the bad stuff. Many blessings to you and yours!

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I'm sure he was worn out from all the helping he did. <rolling eyes>

This is so funny because it is a common thing we face with siblings!

Glad to see your sense of humor is there. It helps so much when faced with these circumstances.

Where does one purchase a reality bat? I think, however, that I may not stop if I were at bat today.

Seriously, thank you ALL for your kind words and advice. I am leaning towards the meeting with the NH team, doctors, hospice and family. It may not be this week, but I know it will happen when it's supposed to.

I went to visit Dad yesterday afternoon around 5:00 and that particular brother was there when I got there. Dad's back was itching. (I think he has a reaction to the bleach they use on the sheets and a hospital gown doesn't stay overlapped in the back. And with the slightest bit of perspiration, it causes irritation.) I sat him up, pulled the gown together in the back, and laid him back down. Presto, he was calm. Brother just stood there. Dad tried to say something. I asked if he wanted his bottom teeth (for some reason they are never in). He nodded. I got them, rinsed them and put them in. He said something, but I have no clue what it was. Brother just stood there. I asked if he wanted his glasses. He nodded. I got them and put them on him. Brother just stood there. When putting on his glasses, I noticed his left eye was swollen. I pulled down the lid and looked at it and thought he either had Pinkeye or a busted blood vessel. I went and got the nurse who looked at it and decided it was a broken blood vessel probably from coughing too hard. Brother just stood there only this time he blinked! Then, it was time for him to go. I'm sure he was worn out from all the helping he did. <rolling eyes> And I'm sure he goes home and tells his children what a mother hen I am, but I don't really care. I do what I do for Dad, not for Brother, not for the other two siblings and not for me. I do it a little bit for my mother who would be doing it if she was here to be with him. (She died five years ago in the same NH. I'm not sure if I told you that.)

So, ya see? That bat thing is sounding way too tempting.

Hope it's sunny wherever you all are today. In Indiana, it's gorgeous! I'm heading out with my book to find a sunny spot for some "me time" before my daughter gets home from school and I go to the NH again. Neither doctor called me back, by the way, so I will call them again.

Thanks again for being here.

Debra

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He also told me on the phone this morning that I should limit my "Dad stuff" to an hour a day.

I read your post aloud to my husband yesterday evening; he laughed bitterly and shook his head when I got to this part. It was very familiar to us.

Honestly, I believe that it's part of their denial. And the only remedy for that is smack with the reality bat right between the eyes. Brother needs to be hands-on involved in dad's daily care.

And if he can't make the time to be present at meetings with the doctor, hospice, etc. then I don't think his opinion is relevant because it's not an informed one.

Hi Debra,
First of all we both are very blessed to have found this forum.

6 years ago my Dad fell backwards off the front steps and cracked his skull open upon hitting the driveway. At first he was somewhat coherent but as time went on he was shrinking. Kind of like a flower that was stepped on and springs back but the damage is done and eventually it dies off. At the same time due to the stress Mom had a heart attack and both Mom and Dad were in ICU across the hall from each other. 4 days after Dad fell a feeding tube was put in and all I remember is going into the hall, sliding down the wall and sobbing. I knew where Dad was headed. It was 10 days later with Dad being on life support and the family had a meeting with the doctors. It was determined Dad would not get any better (must admit that was difficult due to the fact that 9 days prior there was talk of getting him to rehab). Fortunately for my family's sake we were all in agreement. My brother signed the forms and we stood around Dad's bed as he was let go of this earth. I must add that my oldest sister was the only one that had reservations but didn't fight it.
Barb, you are power of attorney for healthcare. Try and convince your siblings to let your Dad find peace. I wonder if any of them would want to exist in the manner your Dad is in.
Take care and you are in my prayers
Kimicoco

When my hubby was in the hospital and we were told what to accept , my daughter would second guess everything I said.I finally got tired of it and told her to talk to the staff her self.
When we know we are loosing a loved one we grasp at straws.
My husband had given his written orders on what he did or did not want.Many times I was happy the decision was out of my hands and in my heart I wished other wise.
It hearts to know a parent who has been there all our lives is not invisable.We cannot imagine a day without them.
This brother needs to be with dad on a daily basis to see what is actually happening.From a distance he only hears words .Words mean nothing until they are seen as being real.
Your dad specified what was acceptable and what was not.This is not a time to be divided.A time to come together to spend quality time by dads side.
Hospice will advise you on what they will do and what to expect.This does not mean you are free from his well being.You have the right to voice your concerns when you see something that is disturbing to you.
Sdsly, your dad is not living as he would have liked.Sad to see a loved one in this state.Thank god my husband was not hooked up to any forms of life saving .He looked so good, was not suffering.I lost him remembering how good he looked.My children remember how he looked on his final days.That was so important because those are the times that remain so vivid in our minds.
Insist your brother join the family with a meeting with the doctors and hospice.
That way , when dad is removed from all artifical means of life , he can not use you and others as an escape goat .This happen when one has such pain and soorow they search for answers and seek someone to blame.
Tell him to come together as a family and make the most of dads time one to remember with togetherness.Dad will feel the presence of his family.Experience tells me such.
Dad gave you this responsibilty for a reason.
Never look back with any shoulds.His wishes were written by him at a time he was able to decide.

Welcome, Debra! So sorry about your dad and all you are going through. This is where the goin' gets tough. Hospice offers a lot of services which could be helpful to your brother (and the rest of you). Perhaps having a family sit-down with the docs and hospice all together would help him understand that this is how things go sometimes and that holding on too tightly can be much crueler than letting go gently. Losing a parent is traumatic for all of us and we all process the news differently... Will this brother come see dad daily, watch over his care to insure he's being well-cared for? It's a very difficult job with patients at this level... Perhaps some alone time with Dad would help him understand his way better...

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He also told me on the phone this morning that I should limit my "Dad stuff" to an hour a day.

If HE wants to cling on to dad so hard, let HIM do all the WORK that goes with caring for someone in a NH... HE needs to walk the floor some and confront this because the problem is his.

I don't think y'all should hold Dad up from his journey much longer... a simple majority will suffice. Your dad made YOU his representative for a reason. I know this is a tough decision, but I think your dad chose you because he knew YOU would choose wisely. Exhaust all possibilities with the docs... Can he speak or recognize any of you or communicate in any way? The neurologist should be able to give you some guidance.

But once you have gathered all the information and recommendations, sleep on it then go with your guts. {{{{HUGS}}}}

Thank you, Bunnys_grl and Bobcat, for your kind words and the warm welcome. I felt blessed today when I found this forum. I suddenly knew that I wasn't alone.

To answer some of your questions, Dad DOES have a DNR; however, the hospital explained to us that it doesn't entail a feeding tube only rescucitation <sp?> measures. In his living will, Dad chose the option of his health care representative making the decision about "artificial hydration and nutrition". And like I said, at the time, we felt like we had no option regarding the PEG. I guess it was then maybe that the hospital should have stepped in with some type of counseling, but they didn't.

It is only the one brother that doesn't think we should have the PEG removed. He also told me on the phone this morning that I should limit my "Dad stuff" to an hour a day. I have his house to drop by and check on, we have Dad's dog at our house, we need to sell his car and eventually the house. I pay his bills. I bring his laundry home from the nursing home and do it for him, AND I haven't missed a day seeing him since this began on January 25th. Not to mention the fill-in time that I spend just thinking about him. I don't think it's possible to limit it to an hour a day. I'm not sure how you compartmentalize and put it away, ya know? I'm not made that way.

My sister lives an hour away. I think she's in agreement on everything, but she hides behind her distance. It's a safe cushion ~~ you know? What she doesn't have to face every day, she'll deal with when she has to. She comes over to visit Dad once a week. My other brother is local and this entire thing has brought he and I much closer. We had a family meeting here Sunday afternoon and I attempted to delegate some of the pressing tasks and they all looked at the floor. It reminded me of a PTO meeting when I was President and needed committee volunteers. This brother did take the paperwork and keys to the car and said he'd work on getting it sold before plates and insurance are due in mid-May. I was grateful for that. It's a start.

I supposed the nursing home hasn't schedule monthly "care plan" meetings because there basically is no plan, because there is no treatment. They are just sustaining him. I'm not sure how they can justify to Medicare why he's in a rehab facility when he's no being rehabbed. I guess that's just a paperwork issue.

I made calls to day to the neurologist and the staff doctor at the nursing home. Neither returned my calls. So, I will start again tomorrow morning. I just feel like we're treading water, and time is ticking away.

I should stop now. I've probably used my monthly word limit in this forum! Please forgive my rantings.

God bless you all for being here.

You can call me Debra.

I am so sorry that you are going through this, DJMay.

Is there any chance that your brother just needs more time, without pressure, to reconcile himself to the fact that dad isn't going to recover? For some reason, the oldest son in the family very often has a more difficult time with this. It's only been one day. Let your brother work on it a few days.

Has your brother been present at any of the meetings with your dad's doctor? If not, perhaps maybe he should be. It may set his heart more at rest to be able to ask questions, including about what hospice means, the feeding tube, and so forth.

Like BG said: some personal experience with the reality of dad's life may be what turns your brother around.

PS: When we first started caregiving, I quit about once a week. (A few spells in there, I quit every day.) But now things are a little more settled down, the rest of the family stays away because they are afraid we'll ask them to do something, and I only quit once a month or so. It just feels good to say it sometimes. Most of us here know what you are going through, understand the frustration, and you can vent to us anytime.

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Dad made me his health care representative in his living will and his Power of Attorney.

Hi DJ! (those are my real initials, btw!)
Where is that living will? Drag it out, read it, and make more copies. Give one to each sibling, and to the nursing home and doctor.
That is what your Dad wanted; the decision is actually out of anybody's hands, regardless of any promises you made to your siblings.
Your Dad will not be suffering because he is not eating. He may in fact be more comfortable not being "force fed."
I'm so very sorry that you feel all alone in this, but please know you are not. That's why a lot of us stick around this board. We know that someone always needs a shoulder, whether they're new, have been here a while, or have left and then come back. Please stay. We will benefit from your experience, also.

DJ, first, welcome to ECO....ouch, is there an advance directive or a DNR? That would be proof about his wishes, unfortunately, without these documents, we get back to the "Promise". This is a bad deal. You hoped to have an agreement and be "off the hook" but your Dad trusted you to enforce his wishes. I am so sorry that you have one bro holding out on you. It would be best if all of your sibs understood and agreed. Since that is not going to happen, we get back to the trust your Dad has in you.

Follow your heart, Your Dad chose you. I am so sorry you face this.

I am so sorry for all that is happening to you DJMay515 as for the siblings well what can I say...ya gotta love um.
But seriously is this brother the only one that is pushing the feeding tube issue?
Are all the rest in agreement with you?
If so I would ask that he watch dad for a whole entire day to see what dad goes through in order to get a deeper perspective about the quality of life *or lack there of*.
Thats no way to live a life IMHO.
I hope that you find some sort of common ground with your siblings.
As for the NH not explaining anything well I think its high time you walked up to them and stated in no uncertain terms its time to talk.
They should have been speaking to you at least once every month to update you on your dads condition and therapies.
If they havent then they are neglecting their job. Time to ruffle some feathers

As an afterthought what is the right thing to do?
Well that is up to you no one can answer that and no one should even try.
You KNOW your father better than anyone what would he want?