When I wrote about maintenance (part 1) in last night’s blog, I was mostly referring to our general household. But of course there is another very different level of maintenance going on over in Vernon’s world. Sometimes it feels that is all that is going on…people just moving around him, trying to keep him alive. They are doing a good job of it, but the results are so subtle, it often feels like nothing is happening at all. He’s just…maintaining.He gets fed through a tube because he still can’t swallow correctly/safely. He gets moved from bed to geri-chair because he still can’t sit up safely (without trying to jump ship.) He can tolerate just enough physical therapy to keep his muscles from returning to bone-like tone but not enough to actually move himself around. He gets too active/agitated and then might need to be sedated for his own safety. This doesn’t happen when he has someone there to watch him/keep company. But today, since I was later than usual, doing other maintenance stuff, by the time I got there, he was sound asleep through my entire visit.But the main problems emerging lately have been in his tri-weekly Dialysis sessions. I have received a few calls from the Dialysis center, pleading with me to come sit with him or send someone to sit with him. He is often too active in his chair to safely be dialyzed. Or sometimes he tries to remove the tubes. They aren’t allowed to restrain him for safety, nor is the staff there equipped to handle severely brain-injured patients. Sitting for three hours is very difficult for him, he is uncomfortable, and he can’t always remember why he is stuck in that strange place.I believe that his brain is actually improving, and as his awareness comes, his body reacts, often on its own. It wants to MOVE, to get out of that chair! We’ve seen this before in earlier stages of his recovery, but it is causing problems. If he can’t be dialyzed, he will get sick again…and then we have an even bigger problem.So…here is the conundrum.I have requested a change in time at the Dialysis Center so that I can sit with him three times a week. But though they put us on a waiting list, they say the change is unlikely due to the other patient’s schedules. The 1-4 time he is allotted is difficult for me to get there for. (Justine isn’t allowed into the space and Maki doesn’t get out of school till 3:30 and the center is an hour away from our house.)A friend volunteered to sit with him on Monday and another on Wednesday, but I still don’t have anyone for tomorrow’s session. Our friend Al has committed for a few weeks of Wednesdays, for which I am so thankful.I have also finally started looking into hiring someone to sit with him, which seems the next logical step.If anyone reading this is local and happens to have time on Mondays or Friday afternoons in Costa Mesa, and wants to help out temporarily, please let me know.The time is supposed to be 1-4, but it can often be later. Its a lot to ask, I realize, but I’m feeling desperate enough to ask for help…again.This is the only picture I have for Vernon today. While you were sleeping. Sorry, babe.
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I didn’t know all this for certain, since I’m so far away, but I guessed. I find it so wrong that it’s up to you to find the person to sit with Vernon during Dialysis, its putting you in an impossible position, and you are already in the hardest positions there is.
I think this is the problem with medicine at the moment, there is so much that cam be done, but a lot of the patients are not able to handle it all, and then there isn’t the staff to sit with the patients when they go through the treatment. For the people who care about the patients, the families, its unbearable because you just cant be there all the time. The nurses are good, but that just isn’t enough. Your case is ofcourse extreme, but I know my mother is reading this blog and she is going trough something similar. She doesn’t have children to take up her time, but she can’t get one day to have a break. She keeps getting called up and thats even when she goes in every day. When I left I was sad, but I also felt a big relief in not having to watch the discomfort. I’m sorry I keep mixing the two different cases, but I guess that’s how we are, at least me, I talk from my own experience. Vernon and my dad are two totally different cases. Your experience is something else, I know, and in a way what you have is a practical problem. But it shouldn’t be your problem! I know none of this is of any help at all. I’m sorry I can’t think of any useful advise or give you any practical help. Thinking of you! Big hug
Allison,
I wish we were closer so we could come and help. We will container to prayer for Vernon and you and Maki and Justine. Your are my Bible study prayer list and a group of ladies on line. There are praying warriors in both groups. So sorry that you are having such a hard time getting him help to sit with him. Remember that God is by your side and He is there to help you get threw this. We love you and your family.
Becky Jones
oh Allison i wish there was something i could do ..feeling so far away … i should be there for my little brother . Synnove is so right , you shouldn`t have this extra worry, to find someone to sit with him, surely it is the hospital who should be caring for the patient at all times?? this seems so very wrong, and is so worrying for us over here….
sending you lots of hugs, wish i could be with you all..and could be there to sit with Vern
xx lots of love and prayers coming your way xx
HI Vanessa. I don’t meant to worry you. The problem is that he isn’t actually in a HOSPITAL. IF he were in a hospital, he would be waited on hand and foot, but those aren’t meant for the long term or they would be overcrowded by patients in need. He is being cared for as much as they can at the care home, but the dialysis center (your parent’s experienced this) is not equipped for his current state of mind. So its just the next obstacle to overcome. We’ll figure it out for him. Love you.
i know you will get it sorted , people have always come forward to help ..they have been so kind and thoughtful xx
there is always an obstacle!! this marathon is becoming a steeplechase!!
love you too xx big , big hugs xx