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Athena · Aug 12, 2005, 02:13 am

Gibran wrote, we speak when we sieze to be at peace with our thoughts. My deisre to do all I can so Guy's last days are pleasant, sure disturbs my peace of mind. This is not my first time of being intimately involved with someone during his/her last days. I am enjoying the knowledge I have gained through experience. For example, I know our society is failing the dieing and while the federal government has acted against Oregon's Right to Die law, I want to increase awareness of how we are failing the dieing and those who care for them.

Oregon Senior Services will pay for someone to asist Guy 5 days a week and another person to do the job on the weekend. This is five 24 hour days and two 24 days. Problem is, anyone doing the job is soon over come by sleep deprivative. The weekend person has time to recover, but the person doing the job 5 days does not have enough time to recover.
I am horrified that those who are suppose to be the experts in such care are in such denial of the harm done to the care giver. The harm is done, because Guy requires 24 hour care and then means the care giver can not go into a deep sleep. If s/he does go into a deep sleep, s/he will not hear Guy's weak voice. The care giver doesn't have much control over the fact that s/he becomes sleep deprived because of failure to have adequate deep sleep, and the state is denying reality and even claiming there is no need to pay for this time because the care giver has housing. As though the care giver were not working through the night and therefore not getting good rest.

What this means, is become irritable, and when a person doesn't understand this as a natural body mechanisism, taken in self defense because of a need for sleep, the care giver faults him/her self for being irritable. Finally there is an emotional scene and the care giver walks away, leaving Guy to find another care giver.

I was hoping if I relieved the 5 day care giver once a week, this would be enough, but clearly it is not. After spending the night in a light sleep, I found myself very tired the next day, and I was very glad I could nap. Also I can see how tired the 5 day care giver is, and know she needs her night's sleep if she is going to have the energy for Guy during the day. This is very energy consuming work and she really needs to be well rested. Gosh, words are so inadequate for conveying the experience of being a care giver at this intense level of care giving.

I feel so angry with the state for not recognizing this and not providing both a day and night person. They are suppose to be the experts and should know better. Obviously I am going to have do a lot of advocacy work to change this at the state level. But then what will change? If the state accepts the reality of some people requiring day and night care givers, they may stop funding in home care and force all people who need this much care, into nursing homes. This may not be so bad for the last month, but it could several months before Guy dies, and he sure doesn't want to spend them in a nursing home. He is only about 46 year old and he should not be abandoned with dying old people. He could not possibly get the personal quality of care in a nursing home that he is getting now. He would be left with nothing to do but die. Where as in his own home, he still has a live to live, although his body is wasting away and he is very dependent on assistant.

I guess this means, I will be doing the night shift for nothing but a desire that Guy have the best last days he can. That is, I am not paid. I am have a life I do not want to give up. I have family and enjoying being free to do things for my family. I wanted to teach children this school year. Caring for Guy all night will mean not having energy for my normal day life. Like his 5 day care giver, the two of us may be devoting our lives to Guy for the next several months while ALS slowly takes his life. The federal government and well meaning people what to out law mercy killing, but where are they now? How many law makers and well meaning people are willing to put their lives on hold while they care for someone who is slowly dieing? From the protection of not being directly, intimately involved, they are making law without the experience needed for wisdom.

PatrickHenry · Aug 12, 2005, 01:30 pm

My sympathy, Athena. Have you considered having Guy's voice amplified so that you could be awoken from a real slumber? Is there a bed or pallet for the caregiver in Guy's room?

Osborn F Enready · Aug 13, 2005, 10:43 am

ALS is terrible, and I feel for you Athena. I wish you the absolute best, and I hope Guy is spared as much suffering as possible.

Athena · Aug 13, 2005, 12:41 pm

Thanks to both of you for the comments.

I think in time it will be necessary for someone to stay in Guys room, but he is not ready for that. I am wondering if a wave action water bed would make it unnecessary to turn him during the night? Does anyone have experience with such a water bed?

Right now we use baby monitors to amplify his voice, but I have slept through his call, and my will responded to this by not going into a deep sleep the third time I spent the night. I am sure this is what happened to the 5 day person, except the last night when I didn't go into a deep sleep, she seemed to relax into deep sleep. That is the point of me staying over. I don't want her to quit, because if she quits there is no replacing her with someone more caring and more desirous of giving him good care. I know I don't want the 5 day responsibility, not even though it means plenty of money. I can give Guy plenty of special attention, only because I am not there very long. No amount of money can get quality care for the 5 day shift. It isn't humanly possible to give that much.

The idea that people die without quality care is troubling to me. On the thread of mourning, there is the social expectation that we feel grief when someone dies, but our commitment to each other is rather weak when it comes to caring for the dying, or even caring for each other. It wasn't always like this. I have spoken with people who remember when people in the community took turns caring for the ill. Today, a neighbor could be in serious need of help, and no is expected to help without pay. This is a sad state of affairs and I think it is related to drug addiction and other social problems.

Athena · Aug 19, 2005, 04:11 pm

I want to say this week things are going much better! I stayed over night for 2 nights, and the 5 day person got to sleep undisturbed. This morning she was happy and energetic as she was when she first began the job. Guy has learned from this experience, and is in the process of finding a college student who is willing to help out in exchange a place to live. He is fortunate in that his mother left him with a very nice 3 bedroom home, and this is now a resource he can use to meet his needs for help. Someone with nothing but public assistance would not have the choices Guy has, and would not be able to reduce the demands on the care giver, and therefore, would not be able to keep good help. It doesn't matter how good the care giver is, when a person is sleep deprived a person just can not function well.

So with the basic problem resolved, this experience with Guy is becoming something vey meaningful and enjoyable. I am thinking of starting a journal with all the care givers and Guy's friends, recording the expereince of sharing life with Guy. He is totally fouced on living and enjoying life the best he can. As more of us get involved, he seems to be enjoying life even more. Now he can look forward to visiting with people who really care about him, and no one is over stressed and therefore dysfunctional.

Especially as I participate on this forum, and feel concerned about some people's lack of concern for others, mixed with questions about if life, or being human is meaningful, I feel a need to right a book to answer that question. I think the title will be "Dieing to Live". I remember my earlier years of wondering if life has meaning, what does it take to make me happy, do I have any value as a human being, etc.. No way could I have dealt with death, except out of a sense of family duty. Now I am choosing to experience Guy's life as his body deteriorates and has no escape from the reality of useless limbs and approaching death, and so far it is a very rewarding experience, full of meaning. If I had known we can face death with so much enjoyment of life, perhaps I wouldn't have lost so many years feeling like life is a struggle instead of a pleasure?

In the future, I may not feel as positive as I do today, but today, I think we are all learning how to enjoy life as we share the last life with Guy. He is surrounded with very friendly and caring people, and I am sure this is important to joy of life we feel. Warning to those in this forum. The more experience the benefits of being with friendly, caring people, the more I will complain when people in the forums are saying things to each other that are hurtful, and the harder I will try to stop jabbing at people myself. REALITY ISN'T WHAT IT IS. IT IS WHAT WE MAKE IT.

Aug 12, 2005, 02:13 am	#1 (permalink) (top)
Athena Volcanic Erupter Location: Oregon Posts: 5,174	Helping Guy die Gibran wrote, we speak when we sieze to be at peace with our thoughts. My deisre to do all I can so Guy's last days are pleasant, sure disturbs my peace of mind. This is not my first time of being intimately involved with someone during his/her last days. I am enjoying the knowledge I have gained through experience. For example, I know our society is failing the dieing and while the federal government has acted against Oregon's Right to Die law, I want to increase awareness of how we are failing the dieing and those who care for them. Oregon Senior Services will pay for someone to asist Guy 5 days a week and another person to do the job on the weekend. This is five 24 hour days and two 24 days. Problem is, anyone doing the job is soon over come by sleep deprivative. The weekend person has time to recover, but the person doing the job 5 days does not have enough time to recover. I am horrified that those who are suppose to be the experts in such care are in such denial of the harm done to the care giver. The harm is done, because Guy requires 24 hour care and then means the care giver can not go into a deep sleep. If s/he does go into a deep sleep, s/he will not hear Guy's weak voice. The care giver doesn't have much control over the fact that s/he becomes sleep deprived because of failure to have adequate deep sleep, and the state is denying reality and even claiming there is no need to pay for this time because the care giver has housing. As though the care giver were not working through the night and therefore not getting good rest. What this means, is become irritable, and when a person doesn't understand this as a natural body mechanisism, taken in self defense because of a need for sleep, the care giver faults him/her self for being irritable. Finally there is an emotional scene and the care giver walks away, leaving Guy to find another care giver. I was hoping if I relieved the 5 day care giver once a week, this would be enough, but clearly it is not. After spending the night in a light sleep, I found myself very tired the next day, and I was very glad I could nap. Also I can see how tired the 5 day care giver is, and know she needs her night's sleep if she is going to have the energy for Guy during the day. This is very energy consuming work and she really needs to be well rested. Gosh, words are so inadequate for conveying the experience of being a care giver at this intense level of care giving. I feel so angry with the state for not recognizing this and not providing both a day and night person. They are suppose to be the experts and should know better. Obviously I am going to have do a lot of advocacy work to change this at the state level. But then what will change? If the state accepts the reality of some people requiring day and night care givers, they may stop funding in home care and force all people who need this much care, into nursing homes. This may not be so bad for the last month, but it could several months before Guy dies, and he sure doesn't want to spend them in a nursing home. He is only about 46 year old and he should not be abandoned with dying old people. He could not possibly get the personal quality of care in a nursing home that he is getting now. He would be left with nothing to do but die. Where as in his own home, he still has a live to live, although his body is wasting away and he is very dependent on assistant. I guess this means, I will be doing the night shift for nothing but a desire that Guy have the best last days he can. That is, I am not paid. I am have a life I do not want to give up. I have family and enjoying being free to do things for my family. I wanted to teach children this school year. Caring for Guy all night will mean not having energy for my normal day life. Like his 5 day care giver, the two of us may be devoting our lives to Guy for the next several months while ALS slowly takes his life. The federal government and well meaning people what to out law mercy killing, but where are they now? How many law makers and well meaning people are willing to put their lives on hold while they care for someone who is slowly dieing? From the protection of not being directly, intimately involved, they are making law without the experience needed for wisdom. Last edited by Athena; Aug 12, 2005 at 02:26 am.

Aug 12, 2005, 01:30 pm	#2 (permalink) (top)
PatrickHenry 9/11: Inside Job Location: Hawai'i, Big Island Posts: 10,446	My sympathy, Athena. Have you considered having Guy's voice amplified so that you could be awoken from a real slumber? Is there a bed or pallet for the caregiver in Guy's room? "Arms in the hands of the citizens may be used at individual discretion for the defense of the country, the overthrow of tyranny or private self-defense." -- John Adams

Aug 13, 2005, 10:43 am	#3 (permalink) (top)
Osborn F Enready Principled Observer Location: Toledo, Ohio Posts: 13,873	ALS is terrible, and I feel for you Athena. I wish you the absolute best, and I hope Guy is spared as much suffering as possible. Petition of Redress of Grievances: http://www.givemeliberty.org/default.htm Canadian Lawsuit Against Their National Banks: http://www.freewebs.com/classaction/ Osborn F. Enready

Aug 13, 2005, 12:41 pm	#4 (permalink) (top)
Athena Volcanic Erupter Location: Oregon Posts: 5,174	Thanks to both of you for the comments. I think in time it will be necessary for someone to stay in Guys room, but he is not ready for that. I am wondering if a wave action water bed would make it unnecessary to turn him during the night? Does anyone have experience with such a water bed? Right now we use baby monitors to amplify his voice, but I have slept through his call, and my will responded to this by not going into a deep sleep the third time I spent the night. I am sure this is what happened to the 5 day person, except the last night when I didn't go into a deep sleep, she seemed to relax into deep sleep. That is the point of me staying over. I don't want her to quit, because if she quits there is no replacing her with someone more caring and more desirous of giving him good care. I know I don't want the 5 day responsibility, not even though it means plenty of money. I can give Guy plenty of special attention, only because I am not there very long. No amount of money can get quality care for the 5 day shift. It isn't humanly possible to give that much. The idea that people die without quality care is troubling to me. On the thread of mourning, there is the social expectation that we feel grief when someone dies, but our commitment to each other is rather weak when it comes to caring for the dying, or even caring for each other. It wasn't always like this. I have spoken with people who remember when people in the community took turns caring for the ill. Today, a neighbor could be in serious need of help, and no is expected to help without pay. This is a sad state of affairs and I think it is related to drug addiction and other social problems. Last edited by Athena; Aug 13, 2005 at 12:45 pm.

Aug 19, 2005, 04:11 pm	#5 (permalink) (top)
Athena Volcanic Erupter Location: Oregon Posts: 5,174	I want to say this week things are going much better! I stayed over night for 2 nights, and the 5 day person got to sleep undisturbed. This morning she was happy and energetic as she was when she first began the job. Guy has learned from this experience, and is in the process of finding a college student who is willing to help out in exchange a place to live. He is fortunate in that his mother left him with a very nice 3 bedroom home, and this is now a resource he can use to meet his needs for help. Someone with nothing but public assistance would not have the choices Guy has, and would not be able to reduce the demands on the care giver, and therefore, would not be able to keep good help. It doesn't matter how good the care giver is, when a person is sleep deprived a person just can not function well. So with the basic problem resolved, this experience with Guy is becoming something vey meaningful and enjoyable. I am thinking of starting a journal with all the care givers and Guy's friends, recording the expereince of sharing life with Guy. He is totally fouced on living and enjoying life the best he can. As more of us get involved, he seems to be enjoying life even more. Now he can look forward to visiting with people who really care about him, and no one is over stressed and therefore dysfunctional. Especially as I participate on this forum, and feel concerned about some people's lack of concern for others, mixed with questions about if life, or being human is meaningful, I feel a need to right a book to answer that question. I think the title will be "Dieing to Live". I remember my earlier years of wondering if life has meaning, what does it take to make me happy, do I have any value as a human being, etc.. No way could I have dealt with death, except out of a sense of family duty. Now I am choosing to experience Guy's life as his body deteriorates and has no escape from the reality of useless limbs and approaching death, and so far it is a very rewarding experience, full of meaning. If I had known we can face death with so much enjoyment of life, perhaps I wouldn't have lost so many years feeling like life is a struggle instead of a pleasure? In the future, I may not feel as positive as I do today, but today, I think we are all learning how to enjoy life as we share the last life with Guy. He is surrounded with very friendly and caring people, and I am sure this is important to joy of life we feel. Warning to those in this forum. The more experience the benefits of being with friendly, caring people, the more I will complain when people in the forums are saying things to each other that are hurtful, and the harder I will try to stop jabbing at people myself. REALITY ISN'T WHAT IT IS. IT IS WHAT WE MAKE IT.