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There is a sadness that has settled really deep in me this week. I don’t know what else to say except I am sad. It’s time to decide what the next step is for my dad as he’s finishing up all of his occupational and physical rehab. Senior care is so expensive and so complicated. And we have looked into home health and assisted living and independent living, there has been lots of ideas thrown around, even him coming to live at my house. And I just keep saying I want hime happy, I want what’s best for him and I really do. So after talking to different places and the facility that he’s in now it’s been decided that he will more then likely need what they called skilled care, what most people know as a nursing home. I know he needs lots of care, he’s a very sick, and he’s ok with a nursing home because the place where he is now has a residential wing and he just wants to stay there and he’s happy with that and I’m happy that he’s ok and that he seems happy about that.
But think about this if you have kids, think of sending your kids off to college, when my dad sent me off to college he cried, when you send them off its like a stepping stone into the world and more then likely they won’t come home to live again after, it’s like that. I sent my dad off to the hospital and it’s been a journey and now he’s going to live somewhere else and he won’t ever come back home again. But my dad isn’t just going off into the world. When my dad moved into the rehab he’s at now he made the comment that the permanent residents where there just waiting to die. And now he’s going to join them. I’m heart broken. I know it isn’t like that, they have activities and I will still go see him every day and he may get to the point that he can go out places, I’ve already started looking into buying a wheel chair accessible van but he will never come home to live. He needs to much care. And I want io be selfish and I want to stomp my foot and demand 20, no 30 more years with him!!! He’s 65!! I’m only 35, I need him!!! My life has not had constants, a lot of what I have had as far as relationships have been come and go or conditional or just short lived for whatever reason but my one constant, my rock, my light when things turn dark has been my dad, this man is amazing and has taught me what unconditional love, selflessness, sacrifice and family is all about. He taught me respect and how to stand up for what I believe and what to expect from a man who loves you. He’s an amazing father, an amazing man. And I know the choice to move him into a nursing home is what’s best for him and even probably for me so I don’t worry myself to death about him. But this week and tonight all I can think of is my daddy stuck in a place I put him waiting to die. So tonight like last night I’m going to lay in bed and cry and watch Wicked Tuna because that’s what we watch together when I visit him and we talk about the day we will have a fishing boat when he’s better and I’m eventually going to come to grips with this and move past it knowing it’s the right thing. But for now I’m just going to be sad.
I spent 45 minutes doing my make up today. Which isn’t an incredibly long time but I still did it. All because I had to pay my dads rehab bill because we are at the point where his insurance will only cover 80% (I’ll go into details about that craziness later) and so I got dressed to run a check into this office because I wanted to look put together. Like I could handle anything and I’m good at handling my dads affairs. I think it’s because the invoice got sent to my brother, I mean I’m his power of attorney, I’m the one who is on file but they sent him an invoice that he looked over and he sent me a pic of it and told me to pay it. So anyway I wanted to look like I to am responsible and capable and all of that. So I go pay and then go visit my dad. He asked me to take the leg off his wheel chair and I couldn’t do it. I have never done it. My brother can do it. He’s done it before. But i can’t. So my dad gets mad, I get upset and 6 minutes after I got there I left. I got KFC and cried and ate chicken in my car, ruining my make up. And that’s how it feels to be unappreciated and overwhelmed, it feels greasy.
I haven’t sat on my couch in over a month, turned on the tv in the living room in just as long. To say I’m exhausted feels like an understatement. This all started 7 weeks ago and the way I maneuvered my life to work around it is I live out of a backpack. In the mornings if I have to work I put comfortable clothes in my backpack and tennis shoes, if I’m working an evening shift I put work clothes and works shoes in my bag. I get up in the mornings and to be completely honest and real about this experience some mornings I’m to tired to shower, I instead take that extra 10/15 minutes to lay in bed in the quiet, other mornings I don’t brush my hair I just throw it in a messy bun and go sometimes because I’m tired and sometimes I can’t remember where I threw my hair brush in my mad dash around my house. I keep deodorant and a hair brush (which sometimes I use and throw in the backseat of my car or leave in the bathroom at work and I have to hunt later) and hair ties in my bag just incase. And I’m out the door as soon as I walk my dog. In the afternoons if I don’t swing in and let my dog out my boyfriend goes by and does it and then I get home most of the time around 930 or 10 and I let the dog out, change into pajamas and get into bed with my iPad and watch Netflix. The other day I was at work when I put my hair up to feel that I never rinsed the shampoo out of my hair when I was in the shower. What I’m trying to say is that it’s an overwhelming, exhausting experience but I’m certainly not complaining, everyday that I get to spend with my dad, every minute is a blessing. One minute more is a wish a lot of people have about their parents and I’m collecting my minutes, sitting in quiet, talking, laughing, fussing at times but it’s all worth it. I love this man, and that’s what makes it worth it.
(my sloth riding a shark holding an umbrella bag, because if your living out of a bag might as well be this one)
Institutional confusion is common they say, spending long periods of time in a hospital or rehab facility can really effect the brain. The constant noise, the lack of social interaction, shift changes, can all be confusing. And that’s great that it’s common because it explains some of what’s happening but for me it’s not. My dad has been in a skilled nursing facility, aka rehab, for 4 days now and last night he called someone the n-word! I’m in the Deep South and this man is 65 years old but it’s not common for him to call people that. I’m not going to pretend that when I was a kid in the 80’s I didn’t hear him tell Racist jokes or be insensitive but that was 30 years ago, since then I’ve seen him change, stand up to people who did use that kind of language, talk about injustices he saw on the news and in real life and then last night BOOM he calls someone a racial slur, I wasn’t ready for that behavior. I was embarrassed and sad and angry and not really sure what to do.
When my dad was in the hospital when he finally started feeling better at night he would have extreme mood changes. He was fine all day, would smile and laugh and then at night would be completely different to the point of ripping out I.V’s, yelling, refusing treatments, thinking he had been kidnapped, and then in the morning insist he wouldn’t do that and the nurse had to be making it up. It was an awful time. Then the Dr said the term Sundowners. He said it’s common, the sun starts to go down and people in intitutions get confused, it explained it away and I had a term to put with it and I was ok with it. Until last night. He hadn’t had an episode that I know of since leaving the hospital and I called my brother and I mentioned it and said oh maybe it’s the sundowners and my brothers response was sundowners would be tough let’s hope not which I thought was odd because that means when he’s not in a rehab place anymore it would be gone. So of course what do I do today, I google it; “Sundowning is a symptom of Alzheimer’s disease and other forms of dementia”. Wait….what!? Is this common in Alzheimer’s patients and dementia patients only? Do they think he has this or is getting this? I don’t know. I have so many questions now for the doctor. I know googling medical conditions is a bad idea but doctors and nurses throw terms around that you don’t understand and sometimes Google is my friend. So today I am going to his rehab place and maybe find some answers to my questions but I doubt it, I’ve learned that rehab is nothing like a hospital, if I ask a medical question it’s usually answered with “I’ll try to find out for you”. I don’t know who I’m suppose to ask or what happens with dr visits or when they are. I’ve got a lot to learn and I’m hoping I can keep my dad from being racist while we go through this crazy experience.
Three weeks ago today I was asked the hardest question I’ve ever been asked. I had prepped for this moment, for the time that I may be asked, I had been given the answer, all I had to do was repeat it back. My dad was in the emergency room, March 21 2017, he had gotten there by ambulance after having to be carried out of my house. He was diagnosed with acute renal failure (kidney failure) he had extremely low blood pressure (73/30) and they couldn’t get it up, his heart rate was in the 130’s and they couldn’t get it lower, he was in shock and things were really bad. My brother and I were sitting with him, we talked to him and touched him and patted him so he knew we were there, sometimes he was awake and sometimes he wasn’t but even when he was awake he wasn’t in his right mind. Over and over again we would tell him we loved him, if he opened his eyes one of us would lean over the bed and say I love you dad without fail. We were in the emergency room for hours, nurses and doctors came and went, my brother went and had dinner then I took my turn, my boyfriend waited in the waiting room. And finally Dr.K came and told us things were very serious and didn’t look good. I remember that moment so clear, my brother and I were standing side by side on the left side of the bed, the doctor on the right and the doctor says “your dad is very sick and so we must ask, if his heart stops beating do you want us to do anything to get it started back, to save his life”. That was my cue, I’m my dads power of attorney, he told me this, prepared me, made sure I knew his wishes and even had them in writing. No. I said no. My brain said yes, my heart said yes, but my mouth said no. My dad had said no. My brother looked at me and I told him dad had been clear on this, the answer is no. The doctor left, I cried, my brother cried, he put his hand on my dads chest, I don’t know if he wanted to feel his heart that may stop, the heart we weren’t going to try to keep going, or if he wanted to feel him breathing or maybe that’s the natural place since he had IV’s in his arms, he leaned over and kissed my dads forehead and again told him he loved him and walked out of the room. I sat by the bed and wept, making sure he knew I too loved him. Turns out his heart is stronger then we thought, hell we were all stronger then we thought and three weeks later we are still at the hospital. We have been through some crazy times and we are no where near the end but he getting better, he has set back, good days and bad but nothing like that first day, that day I had to say NO don’t try to save his life.
This is our journey, it’s been long and hard and scary and at times funny and happy. But this is my story and it didn’t begin that day, it began a few years ago when he first got sick and I started becoming more his parent and taking care of him but I’ll tell you all more about that later.