hospice
i keep pondering the hospice decision.
talked to mom and i said i thought i should wait until after the holidays to decide...
she seemed to think that was okay.
i think everyone is just waiting for me to go through with it, but maybe not...
i found a very helpful website--www.brainhospice.(com?)
it listed symptoms, timelines, what happens at the end, etc etc. and i sent the link to mom and joy and gwen and bob.
alan appears to be going through some of the stages that indicate weeks of life left, although he isnt, according to the timeline, at the 5 week or less mark yet.
i bought him protective undergarments today. he was up 3 times last nite (about every 2 hours) and twice he didn't make it to use the urinal.
he ate about half a bowl of rice and veggies today, then refused anymore. he took one bite of pudding but then seemed angry when i offered him more.
his urine is a little darker than it was yesterday, but he hasnt gone as much.
sometimes he acts like he cant remember how to use a straw. this was one thing listed on the website. and he has clenched his teeth a few times when i have tried to get him to drink something. he also keeps his medicines in his mouth and i have to ask if he has swallowed them. sometimes he says yes and he hasnt. i gently lift his chin to help him swallow them.
carolyn visited while i was out with jake. joy was here and she said carolyn got alan to laugh, remembering the time that alan and jimmy were "blinkers" when carolyn had to drive backward because her car was stuck in reverse.
she brought a fruit basket and hal got alan to eat half an orange.
alan hasnt been snacking as much either. i don't know if it is too much effort to do it or if he just isnt hungry.
jake and i talked a bit about the situation, while we were in the car. he said the hardest parts for him are seeing the physical changes and not understanding what his dad is saying. we talked about not remembering what alan was like before...but i told him, that after, we will remember better because this is just so 'in our face' that it is hard to think of what alan was like, even a short time ago. he said when he sees pictures of his dad, so strong and healthy and in such good shape, it is...i dont know if he finished that one.
jake is such a good helper. he got up twice last nite to help me get alan out of bed so i could change the bedding.
mara and i talked alot while we took a walk, in the warm (50 degree) dark. lily went with us, i didnt have a flashlite but the moon was up and i feel safe with lily by our side.
mara talked alot about how her friends, casey and sadie, help her deal with this at school. they are good friends and she is glad to have them. we talked about how we felt about not wanting to lose alan but not wanting him to be like this too long. i talked about my uncomfortablness with the fact that, since someone is ill, our lives are more open to others. i am such a recluse, but that website mentioned this as a normal response. mara talked about ben at her school who said 'is mara going to go home again to spend time with her mom? that is getting old' and how angry that made mara. she worried that alan will not see her 5th grade graduation. she said she was glad he could come to her christmas play (she has a major role and a singing solo). a neighbor drives a "care-a-van" and said he would transport alan to the school and back.
so, mom stayed for about 7 hours today--so very kind of her. and i got to tickle my kids, give them 'love attacks' (kisses all over their faces), and hold them, hug them for a while. we got to be silly together. then, spending just an hour or so with each of them, we got to talk about what is happening with alan.
jake is sleeping in the new bed tonite. mara and ceara have slept in it twice and it is his turn. lily is sleeping with him.
i am going to sleep now.
goodness bless my family.
i am going to sit by alan more tomorrow, and hold his hand. maybe get out some albums and look at photos. tell him i love him (which i do alot anyway) and tell him how great our life has been and how lucky and happy i am to have shared such a wonderful life with him.
talked to mom and i said i thought i should wait until after the holidays to decide...
she seemed to think that was okay.
i think everyone is just waiting for me to go through with it, but maybe not...
i found a very helpful website--www.brainhospice.(com?)
it listed symptoms, timelines, what happens at the end, etc etc. and i sent the link to mom and joy and gwen and bob.
alan appears to be going through some of the stages that indicate weeks of life left, although he isnt, according to the timeline, at the 5 week or less mark yet.
i bought him protective undergarments today. he was up 3 times last nite (about every 2 hours) and twice he didn't make it to use the urinal.
he ate about half a bowl of rice and veggies today, then refused anymore. he took one bite of pudding but then seemed angry when i offered him more.
his urine is a little darker than it was yesterday, but he hasnt gone as much.
sometimes he acts like he cant remember how to use a straw. this was one thing listed on the website. and he has clenched his teeth a few times when i have tried to get him to drink something. he also keeps his medicines in his mouth and i have to ask if he has swallowed them. sometimes he says yes and he hasnt. i gently lift his chin to help him swallow them.
carolyn visited while i was out with jake. joy was here and she said carolyn got alan to laugh, remembering the time that alan and jimmy were "blinkers" when carolyn had to drive backward because her car was stuck in reverse.
she brought a fruit basket and hal got alan to eat half an orange.
alan hasnt been snacking as much either. i don't know if it is too much effort to do it or if he just isnt hungry.
jake and i talked a bit about the situation, while we were in the car. he said the hardest parts for him are seeing the physical changes and not understanding what his dad is saying. we talked about not remembering what alan was like before...but i told him, that after, we will remember better because this is just so 'in our face' that it is hard to think of what alan was like, even a short time ago. he said when he sees pictures of his dad, so strong and healthy and in such good shape, it is...i dont know if he finished that one.
jake is such a good helper. he got up twice last nite to help me get alan out of bed so i could change the bedding.
mara and i talked alot while we took a walk, in the warm (50 degree) dark. lily went with us, i didnt have a flashlite but the moon was up and i feel safe with lily by our side.
mara talked alot about how her friends, casey and sadie, help her deal with this at school. they are good friends and she is glad to have them. we talked about how we felt about not wanting to lose alan but not wanting him to be like this too long. i talked about my uncomfortablness with the fact that, since someone is ill, our lives are more open to others. i am such a recluse, but that website mentioned this as a normal response. mara talked about ben at her school who said 'is mara going to go home again to spend time with her mom? that is getting old' and how angry that made mara. she worried that alan will not see her 5th grade graduation. she said she was glad he could come to her christmas play (she has a major role and a singing solo). a neighbor drives a "care-a-van" and said he would transport alan to the school and back.
so, mom stayed for about 7 hours today--so very kind of her. and i got to tickle my kids, give them 'love attacks' (kisses all over their faces), and hold them, hug them for a while. we got to be silly together. then, spending just an hour or so with each of them, we got to talk about what is happening with alan.
jake is sleeping in the new bed tonite. mara and ceara have slept in it twice and it is his turn. lily is sleeping with him.
i am going to sleep now.
goodness bless my family.
i am going to sit by alan more tomorrow, and hold his hand. maybe get out some albums and look at photos. tell him i love him (which i do alot anyway) and tell him how great our life has been and how lucky and happy i am to have shared such a wonderful life with him.