Wednesday, January 27, 2010

My Dad

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.


Alicia said...

Oh man, sorry Laura about how quickly the ALS is taking its toll on your dad.

I wonder if his resistance to not have anyone other than his family help him is so he can spend more time with his loved ones and might fear once outside help comes in, he will not get to see his daughters as often.

Hang in there, I'm glad your dad is getting the VA benefits (I saw on a news program a few years ago that some of the best run hospitals are the updated VA hospitals)

I'll keep checking back in to see how you and your family are doing.

Prayers to you all.

Mama said...

Sending prayers your way. I can't even imagine handling what you are going through. I'm glad your dad has such a wonderful support system and that the VA is coming through for you all.

MCM Mama

Laura I. (G.G.) said...

Thanks for posting to let us know how you're doing, Laura. Love and prayers to you and your family.

Patricia said...

I'm so sorry you are all going through this. One suggestion. Call hospice. At least talk to them about your Dad's situation. We waited until much too late with my mom, but they are amazing and make so many things go better. They also pay for many of the things that we thought weren't covered.

debby said...

Laura, so glad to hear from you.

Basically, in my limited experience, NO ONE wants to lose their 'independence.' They resist it to the end.

Its almost funny now, but my dad's wife passively resisted being moved to an 'independent' living facility--we picked out a beautiful 2 bedroom apartment. She just would not take part and ignored what was happening. We were all there for a week, packing and moving stuff, and when the hour came to move, we said, 'okay, let's get in the car. Its time to move.' And she said, 'I CAN"T GO.' And of course, she had to go. Later, before she died, she actually thanked me profusely for everything I had done.

My dad was also VERY resistive to any outside help, all along the way (from housekeeping, to more extensive help.) But now he has accepted it, and loves it.

I guess I am telling you all this, because it really seems like your dad soon will need more help than your family can give to him. And sometimes in life, we do not get to choose what we want. I really had to take the 'tough guy' stance a few times in the process with my dad and his wife.

I think the very best thing is when families can take care of their loved ones. But I have seen them give so much that it wreaked havoc on their lives for years after the loved one was gone. I hope you all can gauge how much of yourselves you can safely give up.

I will keep you in my prayers.

Jill said...

Gosh Laura this just makes me want to cry. This - "I think we are all in mourning now, before he's even gone" just broke my heart because I know that feeling. My grandma had alzheimers and for years we were just waiting. I mourned for her for a long time before she finally passed. It didn't make the actual passing any easier though.

So glad the VA stuff finally went through! That is such a blessing!

I have prayed and will continue to pray for you and your whole family. Take care chica. ((((hugs))))

Vickie said...

it is one thing to take care of him - it is another to allow everyone else to be 'taken down with him'.

If he has to go to the VA to live, then that is what he has to do.

you can't have your sister (or one of the rest of you) ruin her back or neck by doing too much. and you can't have everyone else's families suffer too much. At some point there is a line in the sand.

I think of you every day and hope that things hold steady. I realize he is in decline, but I hope that all the rest of you can hold your own during this process.

Jilligan said...

So sorry to read about your dad. You are in my thoughts and prayers. You are doing a good thing, stay strong.

Cindy...154 said...

Our lives have so many things in common. I was thinking of what I worried about three weeks ago and it all seems so trivial. My Dad needs total care now too. I never wanted him to go in a nursing home, my biggest fear, but we don't have anyone to help my mother. He will be there at least 20 days and then we will re-assess. I am looking at options up here near me so Mom can be close to family if that is what she decides. I am with you in this. We can do it. I did not think I could get through all I am going through but today I know I can. No matter what. My weight is down, too but very squishy. I ignore it right now because I can't do as much about it yet. But we will be okay, and our lives will have great joys along with the sorrows. Take care of your self as best you can and know that you are never alone.

prashant said...

I'm glad your dad is getting the VA benefits

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