While we were away on our trip I mentioned that Bj’s mom had come to stay at our place and hang out with grandpa at the hospital. This worked out great, grandpa got a little better and was in a regular room. He is still there, and the beginning of this week things were looking up (all of these picture are from the 30th, I started off the week thinking I would join Ali in her week in the life challenge, didn’t get to it, but so glad I took these at least). Grandpa was talking to us, and telling us over and over that he wanted a diet coke. But he was not so glad when we gave him this:
The thickener takes away all the carbonation and I think some of the taste. It turns it into diet coke sludge. No wonder it didn’t really quench his thirst. The reason he was on these thickened foods was because the pneumonia he had last week was caused by aspirating food or liquid into his lungs. So they did a swallow test on him, that showed he didn’t do well with pure liquid. He was not a fan of purees and the like, so Bj and I had to talk him into them, and basically distract him so he’d eat.
That’s Bj feeding him. Grandpa’s on an air bed, because he was getting a little bed sore. At this point we were still working on his main goal:
Mmm I want a diet coke too! Then on Wednesday night Bj went to back to visit him (I was doing daytime visits). He brought him a Boost. Loaded it up with thickener and then put some ice in it. Grandpa actually said, "this is some good ice cream." So we really thought we were on to something. The next day when we showed up things were spiraling downward. Somehow he had gotten a hold of a whole thing of what they thought was regular Boost, but it had been so thicken we couldn’t figure out how he got it thin. Finally when we were leaving we realized that he must have some how reached way over to grab the ice cup (which was now melted) and poured it into the thickened Boost. He then drank all of that down into his lungs. So he was put on no food or drink until he had another swallow test (where they give you barium (sp?) to swallow and then x-ray you to see where it went to). He failed it. So no more food. At the same time all of this was traumatic to his whole throat area and his ability to talk quickly fade to whispery grunts. We don’t want to prolong his life just because (and he does not want to be on tubes). But we did want to try to get him on a feeding tube through his nose to give him a little more energy because he was really hungry. We just got a call this morning that he had pulled it out.
Now we’re not going to force the issue, it’s what he wants. I’m an emotional wreck, seriously. Every time I go in there I can’t help but burst into tears. I want to be able to handle it and talk to him and be upbeat, but I loose it, every time. We gave grandpa a sharpie and notepad. He’s been writing while were gone, "gimme my diet coke" "I love you kids all 100%" "where’s Bj?" Knowing that someone is close to the end and there is nothing you can do? It’s terrible. I wish I could have a better outlook on it. He’s so sweet now, every time I come. He wants to touch my belly (and though I’m not a big fan of that, of course I let him). He spent last night checking out my new socks, which he got a huge kick out of. Then pointed to his feet, wanting to know when he was getting his. And I don’t know. If I start them he may never get to wear them, because we don’t know how long he can be like this. I hate to see him in pain. I don’t want to pray for him, he would probably dislike that more than anything, but I do wish good things, and pain free days and a happy ending, or as happy as it can be.
Gosh Darn it’s so hard when you expect things to be better when they seem to be going so well. I’m so sorry Grandpa is not well and in so much pain. My prayers are with you both and even Grandpa too, even if he doesn’t want it. It can’t hurt! Love you both Thinking of you.
I know what you’re going through. Yesterday was the 1 year anniversary of my sisters death. The 3 months watching her go from “normal” to passing away was the hardest thing I’ve ever gone through.
You are there for Grandpa, and that’s what he needs. You guys are all in my thoughts and prayers.
I can’t even imagine what you are going through. I teared up just reading it, it must be so hard to visit him. I think the most important thing is to be there for him, and let him know he is loved. And I think you’re doing a pretty good job of that 🙂 Just take it day by day and let me know if there is anything I can do to help.
I’m so sorry – our prayers are with you and grandpa.
I’m so sorry to hear about your grandpa – you are such a good granddaughter, you and your husband have given him so much love, he’s been lucky to be loved so much. Don’t tell him, but I will pray for him to be pain-free – and that there is diet coke in heaven:) Take care!
tears and hugs…
stay strong!
Your all in my thoughts and prayers!
sending good thoughts your way 🙂
Hi Amber–
You don’t know me, but I’ve been following your blog for awhile now. I love reading the stories about your Grandpa and have read more than one of them out loud to my husband. I hope you don’t think it’s too weird of me to post now. I guess it’s too late if you do.
I’m a speech therapist (the person who did your Grandpa’s swallow study was probably a speech therapist) and I’ve walked through this same thing you’re all going through with more families that I care to think about. It’s a really hard road for everyone, and what’s hardest is wrestling with all of the decisions and how they effect not only the quantity but the quality of his life. The hardest of all for me though was when it was my own mother, who had cancer. I was also pregnant at the time, and it was so hard to take care of her and myself and my baby. I remember it well.
I hope that your Grandpa bounces back and is strong and sassy when your baby comes. I really do.
Hope you don’t mind, but I’d like to say a prayer for him and you. For better or worse I’ve had to do a lot of it so I’ve got it down pretty pat.
He’s a lucky guy to have you and BJ. Hang in there.
Amy
Hello Amber,
I have being reading your blog for some time now but I have never had the courage to leave a comment. This is my first comment ever in “blog land”. I just wanted you to know that you and your family are in my prayers. I wish the best for Grandpa. I hope he has a fast recovery. I know in times like these the stress is so overwhelming, my only advice is to just take each day as it comes and try to get as much rest as possible. I will be sending happy thoughts your way.
Amber–I’m so sorry. I hope that he gets better soon!! And maybe you can start a pair of socks for him…let him know that you are doing it for him. And if you want to say a prayer, I think you should, even if he wouldn’t want you to. He doesn’t have to know and you will feel better once you do, that’s pretty much a garauntee. Prayer is a powerful thing. In the bible it says that you don’t even have to say any words out loud; just think them and God will hear you. Talk to God out loud or to yourself and he will be listening. I hope you find some comfort in this. Me and Grant will be praying for you, BJ and Grandpa. Many hugs!!
I’m so sorry to hear that Grandpa is not doing well.
You and your family are in my thoughts.
I’m so sorry – our thoughts are with you, BJ and grandpa.
Amber – reassure yourself that prayer is exactly what Grandpa needs right now. And although the situation is hard to make sense of and hard to accept, my life has taught me that the only prayer that brings comfort to the family and comfort to the person who is suffering is this: “Lord, Thy will be done.”
HE knows what you are going through, Amber. And HE loves you. And HE loves Grandpa.
You, BJ and Grandpa are certainly in our prayers this morning.
I’m with you. Remember that. I’d start the socks anyway…it could be just the thing to pull you both through. I’ve been in your shoes. Call me if you just need to talk about things with someone. I’ll pray for you that you can have a sense of peace about it all.
Dianne
aw, sweetie. I’m so sorry…such a hard situation for everyone.
I know grandpa wouldn’t want the prayers but I’m praying for you, BJ AND grandpa. You two have been SO wonderful FOR him, and TO him. You have been such a positive light in his life, I know this…reading the grandpa stories I see him changing and see that you’ve been wonderful for him.
Thoughts and prayers are with you Amber! And remember to take care of you and that baby right now too.
please let me know if you need anything…remember I’m just a half hour away!
Amber,
I’ve been reading your blog for sometime now but only just recently went through and read all the grandpa ones. I am tearing up even just writing to wish you strength and love….I have only one grandmother left and she is a bit off her rocker….good days and bad. I can’t imagine what you are going through. I’ll stop now before I get too sappy and emotional but just wanted to send hugs and warm thoughts through the blog land.
Hang in there.
-April
A round of Diet Coke for all – just split one can between the 3 of you, and make a pact not to tell the docs! Thoughtful hugs to all of you. I wish the best for Grandpa. And you know, maybe starting a pair of socks for him might help – its a place to knit away your emotions into something he will wear. My Gramma was going through cancer when I was pregnant with my youngest, we lived a state a way, and I couldn’t go visit while she was in treatment (as I had 2 toddlers in tow with toddler germs) but I knit her the most ugly pink and orange cable and lace socks ever – she loves them. (It was the first time I had used varigate yarn, we had bought it together on our first ever yarn crawl through Portland. Those socks have all my thoughts, tears and love in them – and she knows it.) Take care of yoursefl. We all know that Grandpa is a strong man, when he decides what he wants – he’ll do it! Just let him get a whiff of that Diet Coke – it might perk things up a bit. 🙂
Hi Amber and BJ, I am so sorry you are going thru such a hard time.I really hope your grandpa gets better soon, (he has a baby to welcome into this world.) Just stay strong and spend as much time as possible with him. Those memories you will hold for ever. And remember he loves you 3 very much.