It doesn't seem like it's been over two weeks since I last posted. My days and weeks are so filled, they are flying by. Yet, in some ways it feels like time is moving slowly. Makes no sense, does it? I think it's because my days are packed solid, but they are not my own anymore.
I work, I take care of kids, I take care of household stuff (the best I can anyway), and I take care of my dad. I finally ran/walked yesterday for 30 minutes (I have lost so much strength and endurance and can barely run 5 minutes at a time now), but it had been 8 days since my last short run. We did get a treadmill a couple weeks ago, which is awesome. I've only used it twice, but at least it's there. I wouldn't have gotten in 30 minutes yesterday without it.
My weight is holding steady at 152-ish pounds. I am squishy and definitely not ready for spring clothing, but at least I'm not bursting my seams any longer.
I had strep throat last week & was completely down for one whole day. Thank God for antibiotics. I was back at it in about 36 hours.
My dad takes up a lot of my time now, at least 2 days a week when I'm staying with him (including Saturdays). And I spend at least two to three hours a day on phone calls or paperwork for him. He's been approved for one of the highest VA benefit levels (as of Monday) and we are getting a lot of help from the VA (finally--we applied in September). We are so blessed that we can take care of him without having to worry about how to pay for it. My sister has exhausted her FMLA and is now on personal leave from her job with Toyota. Since my Dad worked at Toyota, too, they are very accommodating to my sister.
He continues to decline, but slowly. He can barely lift himself from his wheelchair now. He insists on getting himself off his chair & onto the toilet (which is a slow, painful, difficult process), because he has a little strength left, but that's not going to last much longer. He already has a catheter, though, so his bathroom trips are usually only once a day. We are getting a power Hoyer lift from the VA soon so we can lift him when he can't any longer. He can't feed himself. He can still swallow food but liquids and pills are getting to be impossible. He's now on liquid lortab & my sister is opening his capsules and giving to him with food. It won't be long before he's on a feeding tube.
We are getting a hospital bed from the VA on Friday & it is going in the family room. Dad won't like it. He doesn't even sleep in a bed. He spends all of his time in his scooter wheelchair. Literally, almost 24 hours a day in that chair. Thankfully he is getting a real wheelchair in a couple weeks from the VA. This one will recline so he can put his feet up. His body is horribly swollen even though he's on two water pills, and his belly is distended (he was already a big guy, but 4 -5 months of not using his muscles is taking it's toll).
He needs care 24/7. We do not have anyone but family caring for him. My sister stays with him, my cousin and two uncles stay with him, my sister's best friend helps out, I stay with him, even my mom and her husband are spending time there when one of us can't. But it's getting hard to keep all the hours covered. I can feel the tension when people feel like they are spending too much time there. It's really hard. My dad is so stubborn, he doesn't even want a stranger (as in, a VA-paid-for Visiting Nurse person) to come help out 3 hours a day to cook and clean, even with my sister there with him. There is one visiting nurse girl that went to school with my sister who can come twice a week, but my dad doesn't want anyone else but her. So for now, we have to give up 3 days a week of help. My sister "handles" my dad and she has to bear the brunt of his displeasure, so if she says it's OK then she just gets 2 days a week. Personally it ticks me off that he can't be flexible, but he has nothing left--literally, can do nothing himself any longer--so him exerting his will is all he's got left, I guess.
His speech is also almost completely gone. When he's not tired he is easier to understand. But last weekend when I was leaving around 7 p.m., I couldn't make out anything. It's extremely frustrating for everyone. He has a talking computer with a keyboard on loan from the MDA, and he can type with a pencil slowly, but he won't use it. I don't understand his choices. We are waiting to see if he is going to get a communication device with eye-gaze speech, but they are very expensive and we don't know if medicare or his insurance or the VA will pay for it. Who knows if he'll even use it.
It's very hard. It hit me the other day the kinds of things I used to worry about and spend my time on before Dad got ALS. A lot of it seems silly now. Some things, like running and training for races, I miss terribly. I know this is temporary, and I know that I will not regret spending time with and for my Dad after this is all over. It still doesn't make life any easier right now. Thankfully my husband is supportive. My mom is amazing. My sister is a saint. And my Dad's brothers are there for him like they've never been before.
I think we are all in mourning now, before he's even gone. It's unbelievably hard to watch someone go through this. And sadly, it's just going to get harder.