My dad and his many obstacles

[bumblecat]

I am going to see my dad today. I'm taking my 3mo DD to meet him. I am worried that he might not be there when we arrive and I just want to vent that anxiety somewhere. My mom is going with me and neither of us want to talk about the possibility - trying to stay positive. I just need to say I'm scared so I can try to let it go and just hope for the best.

My parents divorced when I was 2 due to my father's addictions (which he didn't have when they married). I don't remember him ever living with us, and he remarried about a year later and had 2 sons. He moved across the country from us (back to his home city) when I was 6 or 7 and I visited him about once a year since then, so I have had a relationship with him, though not a very parental one. I love him so much and have never resented him for not being able to get his s*** together or for moving away. I have always felt loved by him and felt that he was doing his best - however little that may be. I have always sensed that he was a damaged soul with his own issues to deal with and always just accepted his limitations as far as what kind of father he was able to be. I always just wanted him to be ok. He has been broken hearted for most of his life and has dealt with that in ways that have estranged him from people he loves - that is how I see his flaws. He is also extremely witty and endearing and I wanted so badly for my daughter to get to know him as a grandpa and for him to know her - and to be able to have a relationship with a child that didn't have all the guilt attached to it that he had with me and my brothers. He had expressed more excitement about "being a grandpa" than I had ever seen from him before. He was making plans to come visit us, which would have been during the holidays, and talking about moving out here so he could be close and teach her to grow tomatoes. I was excited for them both, as well as myself, at the prospect of him being an involved grandparent.

Then 2 months before she was born, on the day of my baby shower, he had a stroke. He was already dealing with kidney failure as well as other problems from diabetes. It was a relatively mild stroke which did paralyze his right side for a couple weeks and he had to have a feeding tube put in because he couldn't swallow and he also couldn't speak for awhile. I made a trip out to see him in September and by then he was speaking intelligibly some of the time and starting to use his right hand again. After I got home he started recovering pretty rapidly and was able to speak pretty well for about a week, so I did get to have a couple of lucid conversations with him in that time - but then he had another stroke which he has not recovered from as well. When he found out the baby was born, all he could do was nod. he is still not using his right limbs, or swallowing food or speaking.He does seem to be comprehending language ok though as he will nod to Y/N questions and make gestures with his left hand. He is very weak due to the fact that he hasn't had food by mouth in months. He's quite emaciated according to his GF and losing a lot of his gorgeous long hair (We're Native).

When I was 3 he was injured in a motorcycle accident which really messed up his left leg. It's never been quite right since, and doctors have suggested amputation many times, which he refused. Since he has been so ill, the tissue in his foot just was not able to cope and they amputated it 2 weeks ago. I was a wreck about it, thinking he might not make it through the surgery,but he did. So I scheduled my flight out there with my mom, who wants to see him too. So we leave today. Yesterday I found out the tissue around the sutures from the amputation is necrotic and they will be doing another surgery to take the amputation above the knee and hope it doesn't happen again. He is being prepped for the OR right now. My flight leaves in 3 hours and I won't get there until midnight tonight. In his condition, any surgery is very scary, even when organs aren't involved.

I was expecting his to be at home and conscious during our visit - now I'm just hoping he'll be alive... I am so heartbroken that he has had to go through all of this - and this isn't even the extent of all his medical issues - just the "biggies" but he has been such an amazing fighter - especially for someone who always said he's be surprised if he made it to 50. I want to believe there is a rainbow waiting for him and all of us at the end of this storm - it's possible that he can still get better, but ... it looks pretty grim right now. I am just trying to stay as positive as possible while leaving room in my psyche for the possible worst. Ugh. It has been hard dealing with this awfulness at the same time that I'm becoming a mother to the most beautiful and sweet baby girl, which I've wanted for so long. I am so thankful at least that she is healthy as well as my partner and I - and that she will (hopefully) at least get a chance to meet her grandpa and have some pictures to remember it by.

[Quirky]

I couldn't read without posting. I hope that you and your dd get to see your dad in time. I am amazed and awed that you have such capacity for forgiveness and understanding of your dad....and I hope that he will pull through and be a grandpa to your little girl.

[thixle]

[boopie2001]

I am so sorry to hear about your father . I hope that your father can recover and meet his granddaughter. I am sending hugs to you and your family .

[greenmansions]

I hope you get to have a good visit with your dad. Sorry you and he are going through all this.

[Sierra]

Thinking of you and your father.

[bumblecat]

He made it through the surgery just fine! Unfortunately he has been in the hospital the whole duration of our visit and I'm going home tomorrow. I was really hoping he would be at home for at least part of it. He was supposed to be sent home Friday and they kept him and then today too. Now it looks like he will have to stay until tuesday. It is difficult to tell what he is processing mentally when you talk to him since he can't speak. He can make eye contact and move his left arm and hand, but he doesn't really have much expression in his face. He holds hands sometimes but sometimes pushes you away or tries to pull on his tubes so we have to fight with him to leave them alone, or else put his hand back in the restraint. That's hard, but he has pulled his feeding tube out a few times and other things as well so we have to be careful. And yes, we have considered that it may be his way of telling us to let him go, but during the 2 weeks of lucidity he had in October, he was able to tell us that wasn't it - that he didn't want to die but that he just would get confused and not know what they were for.

He was very interested in touching the baby and looking at her and I did get some pictures of them looking at each other. I will try to come back in the spring or summer *fingers crossed* when he is at home since his girlfriend who has been the one taking care of him (she has been AMAZING) says he is much more responsive at home. She will be trying to get him referred to a new neurologist as well to get an update on whether there has been any changes since his last scans. The one he saw last was not very communicative with us.

I don't know what to think. He looks so small and blank - but I would like to see case outcomes of similar strokes to see what is possible. I just want to hear his smart ass voice again.

[bumblecat]

Ugh. So, he was sent home a couple days ago, but now he is back in the hospital and it is causing major family drama. He pulled out his feeding tube last night at home, even though his hand was restrained. When his girlfriend took him to the ER, they x-rayed himand discovered he had pneumonia. He was breathing with good oxygenation, but he was having apnea, where he would stop breathing for 10-30 seconds, so she authorized them to respirate him in order to prevent tissue damage in his brain and heart from lack of oxygen during the apnea. Many of my family members are PISSED about this and are demanding that she take himoff the respirator, which she won't do until they try to clear up the pnemoniaand see if that was what was causing the apnea (most likely) or unless he becomes unable to breathe at all without it. She is not using it as life support, but rather to get him through this spell of pneumonia. I agree with her decision, but my brother is very angry with her and now my mom feels like she is in the middle of it and doesn't want to have to take sides - although I am not mad at my brother, I am just glad that he is not in charge of this. I don't know what will happen, but if he if he is able to pull through this episode, then I will be glad that she protected him from oxygen loss. I am numb to feeling hope or grief because he is so on the edge but not gone - I just want to support his GF until there is an outcome one way or another because I know it is taking a lot of strength for her to do what she is doing, especially when the people around her are not being supportive.

[bumblecat]

Well, he did get through the pneumonia, and only needed the respirator for a couple days. He was sent home in stable condition. Unfortunately, the tension caused from this episode between my family and his girlfriend made her feel so disrespected that she stopped communicating with them about what was going on (she was still talking to me though.) She also decided she was uncomfortable with taking care of him at his house, which is not very nice, and in a bad area of Detroit, and right across the street from where my uncle and brother work. So she decided to check him into the nursing home where he was previously for awhile so she could try to get them an apartment to move him into. When they found out about that, they decided to go to court and try to get guardianship taken from her, which they were successful in doing. So now he is in the hospital, starting hospice care, because his girlfriend and I were the last ones with any hope for his recovery. I don't even know at this point if I believe he has a chance or not, but I haven't been convinced to my satisfaction that he doesn't, so it is hard to let this go. I feel helpless being so far away. At this point his brain damage is not the main issue - it is apparently his leg wound site from the amputation. It isn't healing properly and they said he would need yet another surgery to take off another 6 inches, but no one would agree to perform it as they said it would be unethical given the rest of his condition and that the same thing would likely happen yet again. So they will be stopping all his meds as well as dialysis, only leaving in his feeding tube. I don't know what to think. He cannot communicate beyond shaking his head and eye contact and hand holding. He is immobile and cannot eat on his own. He may be able to live this way for sometime, but if he is not going to improve, there is really nothing for him or us to hold on for. I just feel out of the loop of the details of exactly why he can't improve, so I am uncomfortable with the hospice decision. My brother is a short communicator. He will have an hour long conversation with a doctor and then summarize it for me in about 2 sentences. I am left feeling pretty uninformed. His girlfriend was much better at explaining things, but she has been MIA since the hearing. I'm sure this is really hard on her.

I don't know how long to expect him to make it without dialysis, but I feel I need to prepare some things to say to him before they start pumping him full of pain meds. I don't know what to say. I am so sad and angry that he has slipped away from me before I got my chance to make up for a whole life of missing him. I thought he would be moving here around now to be closer to me and Lilah and she was going to get to grow up knowing him. Now I am mourning not only that possibility, but my whole life without him previously. I know him very well, so I know what I am missing and I feel like a little girl just wanting my daddy.

I have never felt such a need for faith. I am strongly agnostic and have always been pretty ok with not knowing what I feel can't be known during this life. I have my suspicions about what the deal might be, but I have resisted coming to any conclusions about anything spiritual because I would feel I was making something up to go along with just because it is hard to accept the unknown as a mystery. Well now I really have been railing against the system, so to speak, angry that I do not know what is going to happen to my dad when he dies and that I do not know if I will see him again in some sort of other side. I want so badly to believe I will, but I want to KNOW it - not just tell myself it's true in order to be able to handle letting go of him. I don't mean any offense to anyone, but faith has always seemed to me to be simply a coping mechanism - that people believe what they need to in order to function and not live with a huge question mark all the time. I can't make the leap. I have been ok with that. But now... I need to know what is happening to my dad! And I can't know. And I really resent that.

And I am overwhelmed with deciding what I need to say to him with the assumption that it's the last thing I get to say to him.

[greenmansions]

OMG you sound like I did last year when my dad passed away - with your discussion about religion and beliefs about what might happen after death. If you get a clue about it, will you let me in on it? I am still struggling with what I believe.

I know how it feels not to fully understand the reasoning for and implications of the medical decisions that have been made. Can you speak to the doctor yourself? Usually they will let family members know what is up, especially when things get to the point of hospice. They don't observe the HIPAA rules to the same degree. I think they recognize how important it is for family members to be fully informed.

I have some thoughts about what you have written about what is happening in hospice, as some of it sounds similar to what my dad went through. If you would like to "discuss it", you can PM me.

I wish you and your dad, and his GF, the best as you go through this. It is hard hard hard.

[Kirsten]

I am so sorry... I hope you are able to tell your dad what you want to tell him, and that you and your brother are able to move past this. I can completely understand not wanting to give up if there is a possibility of him improving, but I can see that your brother may not want your dad to live like this if he can't get better to the point of being able to communicate with you. The whole situation is so sad and hard. I hope you are leaning on people who love you to carry you through this.