Can't sleep, just rambling. Forgive any lapses in sanity, spelling, grammar, punctuation. Ferd is still hanging on. All I can say is it's been rough.
After 3 weeks with no food, on Tuesday he told me he wanted a snack. He had a yogurt and kept it down, then ate again on Wednesday, just a bit. I didn't know what to think. Then Thursday and today he slept all the way through me being there. He's responsive, just weak and tired. It is from one extreme to the other.
it's almost impossible to understand him. I don't know what is going on but he makes sounds almost continuously. It's like he's lost control of his vocal cords. It was very disconcerting until we figured out he wasn't moaning and in pain. He can't seem to control it at all.
I've been so anxious and worried, I feel like I'm losing my mind. This isn't me. I'm normally the calm one, the one who can keep their wits about them. I was thinking this week that all the worry and crap with leave etc has been keeping me from taking this time for what it is, an unexpected gift. Everyone keeps telling me he shouldn't still be here but he is and I have been so stressed out I haven't been appreciating it. Recognizing that has helped a bit. I've decided everything else is just noise right now. I'm setting one have to task for the day then back to the facility. the task for tomorrow is to get gas for the car. I'm not setting the bar very high right now. There will be a price to pay for that later but so be it.
Still sorting through the paperwork for leave. I've started the claim, it's just a matter of a bunch of supporting documentation I need to get together. Work wants me to appeal the denial from our insurance. More doctor's appointments and paperwork.
Wishmobbing, it's funny how things work. I don't have adjustment disorder because nothing is medically "wrong" with me. PTSD doesn't apply either because I'm not post anything, it's still going on. Odd how PTSD is a stress disorder but stress isn't a medical diagnosis pre or during anything. Another catch 22. It does speak to the larger problem most of us end up facing at one point or another. Everyone rushes to help after death. We have a whole system set up for that. No one knows how to help you live with long term caregiving. For us, dealing with completely dependant PALS, the situation is even more difficult. The toll it takes physically, emotionally and financially is pretty much unrecognised. The longer it goes on, the harder it gets and the harder it is to just bounce back after. Every agency I've dealt with for the last 5 and a half years has clearly seen I've needed assistance, be it financial, emotional or with getting someone physically in to help me. Everyone has said no we don't do that but there must be someone..... Even now, tonight I was told I should reprimand the charge nurses who aren't flushing Ferd's sub q locks with saline when they give him his medications. Why am I responsible for making sure the staff know how to do their jobs? Ask anyone who has had to take their PALS to the emiergency room and it's the same thing. Somehow responsibility for proper care always ends up on our shoulders.
As for talking about Ferd in the past tense, I'm not sure people even realise they are doing it. Some of the staff at the facility, one of his friends even one of his sisters have been doing it.
Sue, all I can say is thank you. You constantly inspire and amaze me. Much as I hate it when people say I don't know how you do it, I don't know how you do it. On top of it all you are here to comfort and support the rest of us. You are incredible. One day we will have to meet in person so I can thank you properly.( and get and give that hug)
Laurie, I've always tried my best to be there for Ferd. If all I can do is hold his hand while he sleeps, I'm okay with that. I feel bad that other things have distracted me from that lately. What we wouldn't give for a bit more time with our loved ones and I've wasted some of that. Thankfully not too late.
I've been considering counselling but I have some reservations . I'm not a good sharer in person. It takes me time to absorb and process things. My doctor encouraged me to reach out to friends and family. I miss our life pre ALS when I'm with our friends. Ferd's absence stands out even more. My family is already worried and upset, I've always edited what I've told them. I don't have the energy to reassure them I'm doing okay or at least okay enough. Every suggestion I've had to make me feel better has involved spending less time with Ferd. I'm not sure how that is supposed work, like I'll not worry if I'm not there. Right now I can't afford it time or money wise but maybe down the road. I can see the value of being able to talk to someone who I can be open and honest with. But then again I have all of you. And you understand exactly what I have been and am going through.
A bit wobbly but still standing
Paul
Prince of Persistance
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