Confused (long)

I can't sleep. This whole thing with my father is bothering me. (For those who don't know my father had a stroke sometime in January. I was contacted Jan. 16 and told he was dying. Last Monday they said they'd probably have the papers to stop life support at the end of the week. Tuesday he woke up and is alert although somewhat confused. He's still on a ventilator and is being evaluated to move to a nursing home for vent patients next week).

It's been 20 years and I've only seen him when I went to the hospital to "say goodbye" which turned into more because he was unexpectedly not in a coma. During the last 2.5 weeks he's been in this hospital they've been great about updating me when I call, which until this week was daily. This week I called twice and after he goes to the nursing home it will be less.

I'm struggling because I worked in nursing homes for 9 years. I've seen the good, bad and the very ugly. One of the ugly places was the one with a vent/trach unit. I sincerely hope this place is better; where I worked the vent patients weren't out of bed much if at all and that causes complications plus it's just horribly unpleasant to lay in bed 100% of the time. To add to that he is a nasty person and that will not motivate staff to go above and beyond for him. I've been there. You do everything you can for those patients, accepting the abuse and dreading the daily session but doing your job, but ultimately they prevent themselves from making progress and no progress no therapy. No therapy usually means more time in bed, isolated. More time in bed means the risk of pressure ulcers, pneumonia, etc.

I know he isn't likely to live very long. He has a 100% blockage of one carotid and 85% blockage of the other. He's in congestive heart failure and has severe coronary artery disease. He's not weaned off the vent like they hoped, so he can't even really breathe for himself. It's a matter of time before he has another stroke and this time the do not resuscitate order should be in place. I want him on hospice but I have no control; his guardian does. Presumably the nursing home will suggest it if appropriate. I hope.

I feel so guilty because I can't be there for him. It would not be good emotionally for me to be around him if he can talk. It would just be a string of 20 years pent up abuse. And the nursing home is 6 hours away, each way. I don't even feel a real connection to him. I didn't when I saw him and I said many things to him that I've been waiting to say since I was a little girl. He's my father; he's not my "dad". But it's hard to not want to try to fix things. I think I'm wishing that I could have a relationship with him these last few months of his life. But I can't. When I saw him his eyes are still scary and mean. I wanted to run when I saw them.

Sorry this is long and thanks if you're still reading. This is so complicated and hard to know how to cope. Losing a parent is never fun and there just isn't much to help when it is a parent you've been separated from for 20 years. It's been shocking to find out how much I do care even though I don't want to.

I lost my dad without warning when he was 47 and our relationship was not good. I personally would do all you can to make peace for yourself and then do not bend over backwards when he is moved.

That's what I did Sarah. I told him I forgave him and a bunch of other stuff I've been waiting for him to listen to. Since he couldn't talk the timing was perfect although I doubt he processed it.

I've kept it as "call me when he dies, otherwise I'll call you" and will continue this at the nursing home. I somewhat want to say "ok, got through the hospital, bye" but I want to know what is happening. I also know that patients who have families who check-in get better care a lot of the time. Calling will do less than walking in but I am not going to walk in. My brother and I decided we may make a yearly visit. If we can handle it.

I don't know.

I think this is grieving. Everyone else started when we got the call he was alone and dying. I stayed strong and did things like find out what to do with his body and keeping in touch with the guardian and case manager. i have to do this sometime and I know it's a process. I need my therapist . He's good at helping me feel when it is hard. Monday...

I haven't seen my mother in over 23 years. My siblings are in contact with her and often make comments like "You are so lucky you don't have to deal with mom as she gets older" and "you will get out of taking care of things".

I still think I will grieve (my mom is fairly young and in good health so it's not an imminent thing). It's a process.

Thinking of you during this difficult time. I went through a similar situation with my father. It’s hard before and after. Please take excellent care of yourself.

I'm so sorry for all your going through. I hope therapy on Monday is a big help. Big hugs to to you!!!

I’m sure it’s hard to be grieving a loss that hasn’t even yet occurred. My sister in law hasn’t spoken to her mother in years and she spent the first few years and lots of tears on it. I know it’s miserable. I hope you will do the best you can to take care of yourself. Glad you get to see your t in just a couple of days! All my love!

I, too, am sorry for all you have been going through.

I cannot possibly understand all you are going through, no matter how much I try.

My father's passing was very confusing, too. He was very abusive and very scary... and had been so for many, many years. While I was angry with him and afraid of him, I still mourned his death deeply. He had taken his own life. There were so very many mixed emotions and it was all so very confusing, even years later.

I am glad you have a T to help you to work through this.

I really care about you and wish I could do more to be helpful.
Please know I am thinking of you.


WC

Can you journal? getting it all out on paper may help you process. I'm sorry your going through this.

Please keep writing here.

I don’t have any wise words, but my grandma was on a ventilator when she was alive, and I know what you mean about the type of care they get. My grandma ended up with a dead pinky toe because they didn’t give a f***. It’s horrible the way patients get treated sometimes.

Hopefully you are able to find some inner peace. Best wishes.

I'm so sorry you have to go through this, BeyondtheRainbow I understand how hard it is. Please don't feel guilty about this. I think you're handling all of this wonderfully - you're setting up boundaries for yourself but you're still taking care of your dad. Just do what you feel like you can handle. From what you wrote, it sounds like you're trying your best, and that's all you can do. I hope things will get better soon. I know how painful it is when things like this are occurring. You and your family are in my thougths and prayers. You can do this! You're strong, I know that. I believe in you. Remember that we're here for you. Feel free to vent here as much as you want. We'll listen to what you have to say. We care about you. Keep writing here if it helps. I'm here for you as well. Feel free to PM me anytime. Let me know if I can do something to help you. Wish you good luck! Let us know how it goes. Sending many hugs to you

Thanks everyone for the support. I'm sorry I took so long to answer. I took yesterday to rest and just cope a bit. I slept better last night and while I've rested a lot today I am feeling better. Tomorrow is therapy and hopefully he'll help me get some of the hard feelings out. I tend to avoid them.

I think this is partly hard just because I never really expected anything would happen that he was alive. i thought if I ever heard of him again he'd be dead. So the last few weeks have been surprising and not something I had ever prepared for. I never thought I'd go through actively losing him after losing him when I stepped out of his life 20 years ago. And of course it's hard just because I'm losing my father who I haven't stopped caring about totally. I wish I could have but I don't think I'm made that way. I still think of patients I had 15 years ago who died then.

But anyway, I'll get through it somehow. Journaling is a good idea and one my therapist will suggest. I've been waiting to talk to him for fear of too much emotion coming out at once when I'm alone.

Thanks for so much support.

my family sent my dad to me to die ... we have a very good medical community where I live ,,, so when he got very bad they convinced everyone he should be moved to my town ... for months till he died no one else in the family came to see him or me ... he had no chance of recovery but just hung on and on ...

it was one of the hardest things to do ... but when I repeatly asked my sibling and or my mother to come before it was too late ... knowing they were not coming and knowing he was fighting to stay alive ... in pain ... for no good reason except to wait to see them ...

I told him it was ok to go now ... no more reason to fight ... he actually seem to become at peace ... the nursing staff sent me home knowing he was dying soom ... before i got home he was dead ...

I will never forget telling him it was ok ... it was as if he needed to hear it ... to rest finally ...

we were very close and but he was never lucid while with me ... but he knew I was there , I am sure ...

I have never spoke to my brother or mother (who is dead know ) ... since then ...

what I am trying to say is it is not about your father ... but about you .... you must do what your heart tells you to do ... I have no idea what your path will lead to ... but you must be true to yourself ... love yourself ... have no regrets ...

remember ... Tigger loves you and supports whatever path you decide upon ...


Randy ,,..

BeyondtheRainbow - what about the patients who did 15 years ago?

Aspiring Author I'm not sure what you are asking.

Tigger, thank you. You brought tears to my eyes. I do feel like I've said what I need to say to him. I agree that sometimes, often even, people do need to be told it's ok to let go. The problem is that if he'd been days from having life support removed when I saw him that would have been different than saying it to him when he was alert and seeming to fight to improve. That fight didn't seem to hold long but maybe he's just going at a slow pace. Only time will tell.

I am so glad you were able to be there for your father. I once spent an evening holding the hand of a woman who was dying without any known family. When I left we thought it was a matter of hours but the next day she was up and not near death at all. A week later she got worse and a niece nobody knew she had came to see her. The niece said "Hi Aunt Sally (name made up)" and the woman died. She was waiting for that goodbye.

If my father winds up in a coma again and for some reason life support remained I'd go say goodbye again. I pray that never happens and that the DNR is in place. I need to check on that this week. I can't see him as he is. He'd be vicious and that's not a good final memory. He'd also demand my brother or I care for him. And that's just not possible. Even if he weren't mean and abusive and on a ventilator he mentally can't care for himself well enough to not need 24 hour care.

,My sister has chosen to not see him. She's coping with immense anger at the entire situation. It's hard to know what to say to her. She wants updates but I think she finds them painful. I'm sorry your mother and sister didn't say goodbye and that he wanted them to. That's got to be rough to witness.

Everyone has said to be sure I've said and done everything. I think I have but I know when he dies that feeling is likely to shift and I'll feel unreasonably responsible for things. Fortunately I have people ready to support me through that. Right now I don't feel guilt but I do feel heartbroken that his life for the foreseeable future is hooked to a vent and feeding tube, hands restrained, probably mostly in bed, relatively confused. I can't fix those things but it's just not much of a life.I feel like he's suffering, not in pain necessarily but because his body has given up on him before his brain, or at least before the vent was removed.

I hope you do have good facilities. He's not going to be exactly in the city I'm pretty sure you live in but relatively nearby.

Thanks again.

Sorry it this is too triggering or way off topic but it reminds me of a Kurt Cobain line, 'I tried to have a father, but instead I had a Dad', this is follower by, 'I just want you to know that I don't hate you anymore'. It was just what your story reminded me of. It breaks my heart that you are in such a horrible situation with your family and wish you nothing but peace at this time. BIG HUGS!!!

Sorry, typo. You wrote of patients who died 15 years ago and I did not have context for that.

The only thing that comes to mind as a possible suggestion (the only one since you already have done all the right things) is finding any good memories of him if there are some from your childhood and writing about them in your journal to see how you feel after doing that. Maybe something inside you will melt.

What a heartbreaking situation.

That's funny because after my therapy session I made a note on my phone that one reason this is sad is that I lost my dad 20 years ago and now I'm losing my father. So backwards from the song.

I am an occupational therapist although I am on disability now. I worked in nursing homes for 9 years so I have seen a lot about death and what happens. There were patients I'd get close to and then they'd die and I'd grieve a little. I've also seen a lot about how care in nursing homes is and I pray he's going to a good one.

I'm having a hard time coming up with good memories. I know they're there but right now I'm just not finding them. I do need to start writing but somehow it scares me.

If that is the case, do not force yourself. Maybe there aren't good memories or the are queued up somewhere in the very back, and bad memories are waiting for a permission to be written down first.

I finally realized I do have good memories but the bad ones are the most accessible because they are associated with fear and I think the fear overcomes the good stuff. I'm sure in the months to come I'll deal with both.

I talked to the case manager today. My father is showing fairly significant confusion if you look at it one way and distinct preferences another. Basically when he had break from restraints he pulled out his feeding tube (again; this thing is surgically implanted and held in place with an internal balloon and must hurt badly to pull out. This one had just been placed a week ago), his trach (!!!!) and then the tube they put in his nose to his stomach to feed him until they could replace the feeding tube. He is no longer getting restraint breaks.

They think it is confusion. I'm sure he is confused but I think it's also partly him expressing himself. He doesn't want the tubes. He doesn't want to live on machines. And when he finds himself in a nursing home late this week or early next he's not going to want to live there either. Some people do better with that than others and he will not handle it well. He was so paranoid living in his house and now he's got no privacy, a roommate, etc. plus the tubes and diapers. I told the case manager he'll give up and die there and I truly believe that. Hopefully without pulling tubes every few days, especially the trach.

I'm so sad for him.

I'm so sorry, BeyondtheRainbow It must be really hard for both of you. You're both in my thougths and prayers. Please don't give up. I hope things will get better soon. Just remember that you're doing everything you can to stay near him. Be proud of yourself for that. You're a wonderful person. Stay safe and take care of yourself. Your health is important as well. Don't neglect yourself. Remember that we're here for you to support you. You know we won't judge you here. Wish you good luck! Let us know how it goes. Sending many hugs to you