Sep. 26th, 2014

My dad

Sep. 26th, 2014 10:50 am
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I returned home yesterday afternoon after a long week at my parents’ place in Florida. My dad is dying. The last year has taken a hard toll from him, and he is in heart failure. My sister has become a medical co-surrogate, and is trying to arrange proper power of attorney, hospice or assisted living or hospital care, while home schooling her kids and covering her own house. With this latest hospital visit, his 6th in 6 months, he decided he wants nothing more than to die at home, with his Mary(my mom).

Last week, I went down to Naples to get my parents’ house prepared for in-home hospice care, get dad settled in, help coordinate alternative respite help, legal stuff, calls to hospice, calls to my sister, calls to other family members, calls to insurance companies, calls to work. Calls and more calls. I wanted to shoulder and do as much as I could in the limited amount of time that I would be down there, so I went prepared for anything. The only thing that I wasn’t prepared for was the lack of good cellphone signal, which was really frustrating at times.

Speaking of my mother, who is a stubborn, stubborn woman, she has tried to hold up, take care of him, not tell us all the info, and sort-of-but-not-really take care of herself. She is emotionally and physically spent, barely eating, and mostly props herself up with drinking at night to hold back the crying. When I got there Saturday, she crumpled into me and sobbed. It was a little shocking to see her be this vulnerable, how small she is now, a thin, seemingly hollow-boned woman, a lot more frail and scared than a year ago, while trying to still be so proud.

On the subject of dad, he is at his final stage, more or less. He has had extreme low sodium issues, dementia-like symptoms, and sleep apnea that has placed an enormous strain on his heart. He hasn’t been sleeping well for 4 or more years, and when he goes to sleep, his heartbeat has gotten so low that his brain sends a jolt of adrenaline to speed his heart back up, jolting him back awake, and that has strained his heart too much. At the time I left yesterday, he is bed-ridden, sometimes combative, sometimes hallucinating, mostly sleeping. With the arthritis, the bed sores, and the shortening muscles and tendons causing pain, I think the sleeping is probably a blessing. Mom and I took turns adjusting him in the bed, rearranging sheets, rearranging the catheter(He keeps playing with his “privates), feeding him, or helping him feed himself, chatting with him when lucid enough, wipe him off, bathing, etc.

I had to come back yesterday, for I couldn’t keep work at bay any longer. Bastian asked every day when he would get daddy time, and when he could go back to daddy’s house, which was sweet. My sister’s husband Drew is going down today from Tampa to visit with my mom, and talk about legal and other options, and my sister will go back down soon. At this point, we are all on an emotional/spiritual vigil, regardless of where we are physically.

The most frustrating thing has been lack of all the information. My mom not telling us everything that has been going on for the last year has us behind the ball, and my sister and I are playing catch up. There is a saying that someone coined, the idea of at some point, the kids become the parents, and the parents become the kids. My mom is having a hard time with that one. The lack of consistent information from the hospice care place has been most frustrating, and has sometimes left us in a scramble. We’ve managed to keep up with my dad’s needs, at least, but we’re still trying to come up with better methods for my mom’s needs.

As far as how I feel about all this? I’m holding up OK. I am very sad about the whole thing. He wasn’t the best dad, he wasn’t the worst dad, but he is my dad, and I love him. He was a workaholic all my life, so I didn’t see him much. He tried to play catch-up with me a little late in life, and so lost making as deep a connection as he would have liked. He didn’t take care of himself, and he knew what he was doing(or wasn’t doing) to his health, and he didn’t seem to mind, so I also think it a real waste. He could have been a rather spry and healthy 73, instead of the condition he’s in now. His birthday is in 4 days, and I hope we get to celebrate just one more. I’m a little worn out, too, from multiple drives down there and back in the last few months, phone calls back and forth to all manner of people, prep work, etc. I have kept pretty quiet about what’s been going on, but after this trip, I need to put some of this down somewhere. It’s been a rough spring and summer, for a few reasons, but I’m trying my best to do better by myself.

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