From Chester's sister Misty Dawn

Hi all.
Just letting you know that Chester suffered a long and breath robbing seizure tonight. The paramedics were called and oxygen was administered. They also got him into bed after he pinked up and was alert again. Dan and Nancy were terrified, of course. We have to realise that this is to be expected and will most likely happen again...when and not if. It is very hard for
us to watch and experience with him, but would he do any less if the tables were turned? I will be talking to him about everything tomorrow, and I'm sure we'll be enlisting the good folks at hospice for assistance. It is all set up but waiting for him to be ready for it. Also, he has been refusing to increase the seizure meds per Dr's request, so maybe that will change as well.
It just seemed to me that as much as we've all talked and thought about Chester's eventual passing, we are still thinking of it as a "future" thing, when it could become a "now" thing so quickly. Please continue to send your prayers and energy Chester's way as he enters the next phase of his life.

MistyDawn

in retrospect

Hello friends and lovers of Chester,
I promised to send another message at the end of my stay with Chester, but there just was not time for that. I left there two days ago, on Thursday, right before he went to the doctor. I have not talked to anyone as yet about the doctor visit, but I will let you know how it went.

There is really nothing new to tell everyone about the state of Chester's being. He is fully aware of what is going on with him, and he would cry when I asked him about things that seemed to confuse him. I did ask him if he was able to read his e-mail, and he just said no, and indicated that he is becoming really confused about how to use his computer. I was not able to read any messages to him because we just did not have the time. I wondered about that, since I had been there for days, and I started paying attention to what took up all the time I had there with him.

The major part of my days there were spent in helping him get dressed or changed. He napped a lot. Then he would have to pee. His napping was really interrupted a lot by having to pee. One morning was especially difficult, as he had a hard time holding his urine, and he wet himself a number of times. He is now using 'Depends' and he was getting really upset at wetting them. I just told him, "That is what they are for." He seemed to accept that statement and we were able to go on about what we were doing. I spent mornings checking my e-mail between him napping and helping him dress or go to the bathroom. Dan would put his socks on him before he left for work between 7 and 8AM. Chester would usually go back and nap until around 9AM. He would also take a nap in the afternoon. If he did not, I realized that he got very tired, and he lost more of the little ability to communicate what he was wanting, needing or saying. I have to say that frustration is a main component of what his emotional state. He has lost the ability to use another word, or even to show us what he means at times. When it would be simple for him to move himself to SHOW us what he wants or needs, he does not think to do so. Its the impact of the brain being compromised by the tumor.

My biggest concern, and the concern of Dan and Nancy, is his confusion and obsession over his medications. I think that he is getting them confused at times. I do know that one day he did not take his water pills (for swelling). When he finally took them the next day, he kept wetting himself (as I reported above). Some of the drugs have changed since he went to Missouri so the list they had are no longer correct. He has always been the one in charge of his meds, and he can get quite angry if questioned about them. A lot of my time was spent in trying to figure out what he was trying to say about his medication. He would count them obsessively at times. And then he was not clear about which medications he needed. It was all rather difficult.

The other concern I have is about his ability to get himself on and off the toilet, and in and out of his wheelchair. He did fall on Thursday as his dad was helping him go from wheelchair to toilet. We got him up (his step-mom Terri and his dad Chet got him up) but it was quite frightening for all concerned. Chester's strength and balance seems to be slightly more compromised. A lot of the time I spent with him was in waiting until he was ready to get himself to stand up.... to help him pull up his pants, or in getting into his wheelchair. The last morning I was there, it took an hour getting him dressed. He just was not ready or able to stand up.

I do have to say that Chester is surrounded by a loving supportive family. They may not put info on the blog very often, but they are right there with Chester. I do worry about them, that they get enough support and especially sleep. Dan and Nancy are up with Chester every night, and then go and have full time work schedules. His sister Dawn and Mom are there with him during the day. His dad and step-mom come and visit as often as they can (they live a couple hours away). Please continue to send them energy and support as you do for Chester.

I suggest that if you wish to send greetings to Chester, do so my snail mail. I will post his mailing address here in another post, since I don't have it ready at hand (I'm on my cousins computer). He really enjoys pictures, and short notes would be great. Write big so he can see it. Otherwise someone has to read it to him. Know that others will see it. Since he can not read his e-mail, I think that he feels more alone than ever.

Again, if you have any questions, please write to me. I have a new e-mail address: Owlbreath@fuse.net. I will be able to access that account on Monday. I'm afraid the old address at sbcglobal.net will expire before I get the new one out to folks. So if you are in my address book, please note this new one. Hopefully I'll be able to get the adress out there to everyone.

My love to all, Marilyn

Send e-mail

Hi everyone,
Just wanted to let you know that I saw Chester on his computer last night, so please keep the e-mail coming. Remember, double space, large print and keep the messages short. If you have a couple of things to tell him, send it in two or three (just thought of that myself). I will write more in a couple of days, before I leave on Thursday. Thank you for those who wrote me. Your support is felt.

Love ya, Marilyn

Visiting Chester

Hello everyone,
Well, as some of you know, I am on a journey moving from California to Cincinnati, Ohio. That move has been calling me for a while, so I know that there is something I must do there. Also, my family is there, and I have been missing them with increased intensity. I think its all about being called back there.

So here I am in Missouri, having arrived yesterday. Chester's state is one that I expected, but it is still difficult seeing him decline. I am not worried about him reading this, because I do not believe that he is capable of logging onto his computer any more.

His communication skills are practically nil. One statement that comes out all the time is "all the way back" with hand movements of moving something back. No matter what he wants, he keeps saying that when he wants something. This morning he wanted me to cover him with his sheet, but he did not take ahold of the sheet to show me what it was that he desired. He just kept saying "all the way back, all the way back" with the hand movements. When I covered him up, he sighed with relief and said 'yes'. And his yes and no's keep getting mixed up. He will say yes for no and visa versa. The other statements that come out is counting. Last night he was trying to tell Nancy and I that he needed a bottle of medication (we had already gotten him into bed), and he just kept saying "one, two." The bottle of medication was standing next to another bottle that had some of the pills cut in half. He does occasionally come out with what he actually wants to say, and he definitely understands everything that is said to him. But the frustration over not being able to communicate is really high at times. I have not seen him lose his temper yet, but it may come.

There are also times when he just does not seem to be present. I'm not sure if its just that he is tuning people out, especially if he is in a group of people (there were four of us with him last night) or if he just has gotten confused over too much input. His brother Dan seems to think that his eyesight seems to go away at times. He does seem to stare into space, or give me an unfocused look at times. But since he can not communicate, its hard to have a discussion with him about what is going on with his sight, his thought process or if he is getting overwhelmed.

Physically he does seem a bit more fragile. He can not seem to be able to put a lot of weight on his right leg. I do know that he has fallen a couple of times while trying to go to the bathroom. He fell once while he was home by himself and trying to go to the bathroom. He kept calling Misty at home instead of on her cell to let them know he needed help, and his emergency button did not seem to work from the bathroom. When they checked whether the button was working later that day, it worked fine. Since that time his family has not left him alone. Incontinence has become a real problem, especially at night. We talked to someone today about an external catheter, which may help on many levels. He would not have to get up at night to use the urinal.

He seems to 'almost' be able to do things that he never even had to think about before. Last night he was trying to get to a certain song on his Ipod, and he kept trying to touch the screen instead of the bottom of the thing. I used my voice to try to help him, since my trying to physically help him did not seem to be what he wanted (independent soul that he is). He finally got it on the song he wanted to listen to. It did point out to me that certain things seem to be slowly deteriorating in his thought processes.

He still laughs a lot with me, even when I have to tell him that it was a really dumb joke I just told. I had him really laughing this morning when his sister Misty called. I told her that Chester had thrown me out of the house out into the snow. Then she asked how I had gotten the phone, and I said that he threw that out too when it started to ring. He thought that was really funny. Then he was like a little kid when they got there, wanting me to be really quiet so we could scare them when they came looking for us.

And we had sushi for lunch. He can no longer eat any of the uncooked fish. The last time it gave him a horrible case of diarrhea and cramping that lasted for two days. But we had a feast this afternoon. In Missouri of all places. There was lots to be enjoyed. Eating is one of his high pleasures, and his brother Dan is an excellent cook. His family is very loving to him, very supportive.

So that is about it for now. His brother Dan, sister in law Nancy, sister Misty and mother are all pretty well exhausted and still keeping on with what has to be done. Just to let you know why there are not too many posts here to the blog. It gets hard to write about what is going on even for me. I will be posting while I am here.

If you have questions, please e-mail me at Owlbreath@sbcglobal.net. I will not necessarily look for responses or questions posted to the blog. Just too busy. Its taken me all day to get this written. Its easier to respond to questions.

I also wanted to mention that there will come a time when they will probably be forced to put Chester in a nursing home. Dan is the only one that can pick him up (like when he falls) and Chester is now about 250 lbs. If he gets to a point where he can not stand on his own, or get himself into his wheelchair, they will be forced to find a place for him that can care for him on a 24 hour basis. Nancy and Dan both get up during the night with him (take turns) but they both have jobs and I can see the exhaustion in them (Nancy got up with him three times the other night and had to clean his sheets twice). Misty and his Mom would not be able to physically care for him if he loses any more mobility. I just wanted to put it out there that its becoming a probability, and not just a possibility. I know that he would not want or like it, but there is the reality of the situation.


Love to all, Marilyn