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
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
posted by Marilyn at 8:02 AM
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