Dad died this morning. I was getting up every 2 hours to give him his morphine, and when I woke up at 4:30 AM I didn't hear him breathing or his gurgling. I jumped up, dashed into his room, put my hand on his face and he gurgled. I was relieved until I realized it was a very long time before he took one more breath, and it was his last. I was holding his hand. He was very warm, as if he had been under a blanket, but he was covered with only his sheet. His eyes were closed and he looked peaceful.
I told him he was a good man, a good father, we all loved him and would never forget him.
I sat with him until Dave came over about 6:30. Dave made the calls to Hospice and the funeral home. In accordance with Dad's wishes, he will be cremated. We will take his ashes to Geoff and Betsy's farm when we can get together, and have a memorial celebration.
Many many thanks to all of you who took this journey with me and were so supportive and helpful. All the comments, emails, phone calls and visits made this very difficult time easier for Dave and me. Love you Dad.
Monday, November 1, 2010
Sunday, October 31, 2010
Sunday - Some Peace
I wrote earlier today that I needed to call Hospice to see if I should try to give Dad his meds while he was still sleeping. The nurse on call said yes, though it may wake him up. We did, but Dad did not wake up. Steve then left, and we were sorry to see him go.
After a few more hours, I thought maybe Dad is now comatose, as he was not responding to our voices. When his next dose of meds was due, I gave it to him, but he did not swallow it (a tiny bit of liquid). Shortly afterwards, he did a little coughing and gurgling started. I was afraid he was going to choke, so Dave raised the head of the bed and tried to swab out Dad's mouth, but the gurgling would not stop. I called Hospice again, and they sent a nurse to see him. Vivian said he was not choking, what we were hearing is commonly known as the "death rattle," caused by normal end-of-life secretions. She opened some new medicine from his Hospice Comfort Pack and gave him a few drops which may help dry the secretions, and she also gave him his next round of morphine.
She checked him and said he is in his final stage - he is "actively dying." He has signs his circulation is shutting down, and although he is easily getting air, his chest muscles are not doing his breathing for him, his belly muscles are. There are other things I won't detail, but it is all so sad.
She told us to continue the morphine, and to look for any facial frowning, as that will mean he is not comfortable. Obviously, he cannot speak, but he may be able to hear, so I make sure I tell him I love him often.
Vivian said her best guess is that Dad has 1-3 days left. I am so glad he finally has relaxed and seems to be at peace.
After a few more hours, I thought maybe Dad is now comatose, as he was not responding to our voices. When his next dose of meds was due, I gave it to him, but he did not swallow it (a tiny bit of liquid). Shortly afterwards, he did a little coughing and gurgling started. I was afraid he was going to choke, so Dave raised the head of the bed and tried to swab out Dad's mouth, but the gurgling would not stop. I called Hospice again, and they sent a nurse to see him. Vivian said he was not choking, what we were hearing is commonly known as the "death rattle," caused by normal end-of-life secretions. She opened some new medicine from his Hospice Comfort Pack and gave him a few drops which may help dry the secretions, and she also gave him his next round of morphine.
She checked him and said he is in his final stage - he is "actively dying." He has signs his circulation is shutting down, and although he is easily getting air, his chest muscles are not doing his breathing for him, his belly muscles are. There are other things I won't detail, but it is all so sad.
She told us to continue the morphine, and to look for any facial frowning, as that will mean he is not comfortable. Obviously, he cannot speak, but he may be able to hear, so I make sure I tell him I love him often.
Vivian said her best guess is that Dad has 1-3 days left. I am so glad he finally has relaxed and seems to be at peace.
Saturday - Again
Now it's Sunday morning and I thought I'd catch up a little about Saturday. As I mentioned, Steve had a rough Friday night because Dad had a rough night. I wrote a few days ago that if we had to choose between Dad having pain & delusions or being comatose, we would choose comatose. In an effort to get the amount of drugs right, we've increased them dramatically over the last few days but Dad is not comatose, and continues to roll back and forth, hit his chest, grab out for something to hold onto, and go in and out of lucidity. I know Hospice (and we) do not want to overdose, but it seems to be taking FOREVER to get Dad to a state of relaxation and sleep. Friday night he slept well for only 6 hours and yesterday he had a 5 hour nap, but otherwise he was either awake or in that restless, rolling, talking semi-sleep.
He had awakened from his nap about 6 PM yesterday and again went through hours of being awake and being in the semi-sleep. He did not start to sleep soundly until 1 AM this morning. It's now been 7 hours of relief for us, meaning we know he must be more comfortable. I was with Steve until 9:30 last night, and Dad was so restless we gave him his next set of drugs about midnight (I came to help, as it is a 2 person job, especially when you are dog-tired). I stayed until Dad fell asleep at 1. Steve was up several times after that checking on him.
Now our question is, do we wake him up to give him his meds, or let him sleep? I'm going to call Hospice to find out. I can't imagine waking him up when he finally is sleeping, but maybe he needs that continuous application. Many of the questions we have do not occur to us until we NEED to know - we don't think of all the possible situations ahead of time.
He had awakened from his nap about 6 PM yesterday and again went through hours of being awake and being in the semi-sleep. He did not start to sleep soundly until 1 AM this morning. It's now been 7 hours of relief for us, meaning we know he must be more comfortable. I was with Steve until 9:30 last night, and Dad was so restless we gave him his next set of drugs about midnight (I came to help, as it is a 2 person job, especially when you are dog-tired). I stayed until Dad fell asleep at 1. Steve was up several times after that checking on him.
Now our question is, do we wake him up to give him his meds, or let him sleep? I'm going to call Hospice to find out. I can't imagine waking him up when he finally is sleeping, but maybe he needs that continuous application. Many of the questions we have do not occur to us until we NEED to know - we don't think of all the possible situations ahead of time.
Saturday, October 30, 2010
Saturday - A Delay
Sorry, loyal followers, I am too tired to think straight tonight. Steve had night duty last night and it wasn't easy, then Dave and Steve were with Dad most of the day while I dealt with our tardy and drugged painter. The best part of my day was this evening when I went trick-or-treating with a little monkey and a Ninja.
I was waiting to leave Dad's until he fell asleep, which was at 9:30. I HOPE he's asleep for a good long while, but my gut feel is that he seems to be a little too restless. Steve will call us when he (Dad) wakes up so we can do the medication routine again. Sweet dreams.
I was waiting to leave Dad's until he fell asleep, which was at 9:30. I HOPE he's asleep for a good long while, but my gut feel is that he seems to be a little too restless. Steve will call us when he (Dad) wakes up so we can do the medication routine again. Sweet dreams.
Friday, October 29, 2010
Friday - Steve Arrives
Dave was on duty last night. Dad slept from about 10 PM to 4 AM. When he woke up, he was again agitated for hours. I came over about 7 AM and talked to him a little, then a little while later he asked what time it was. Dave told him "7:15" and I added "in the morning." Dad gave a big sigh, then fell right asleep. It was as though he was satisfied he made it to another day. He really does not like to sleep at night - this has been going on for weeks. Beth says it's a fairly common phenomenon, as many people believe they will die in their sleep, so they try not to sleep - at night. They are more comfortable taking "naps" in the daytime.
I know I tend to analyze and analyze. I can't help but wonder what we can do to help Dad, and I think if I could only understand what was going on, we could make it easier for him. Maybe not, but I want to try.
Dad slept for 5 hours, and woke up at 12:30, just has his massage therapist arrived. He wanted to sit up. Trina oiled up her hands with a luscious smelling rosemary cream, and she worked mostly on his back. He was confused, as he liked it, but kept asking, Why are you doing this to me? He finally relaxed, laid down and Trina was massaging his scalp when Jessica the nursing assistant arrived. Charisse is still out with a hurt back.
Jessica was very nice to Dad, and very efficient, but didn't spend the time Charisse does. Dad was all clean, his sheets were changed, he got new morphine patches and his thorazine. He kept asking where he was, and saying please don't hurt me (me: boo hoo) though of course Jessica and Trina were very gentle with him. I think when his pain meds wear off, he is just a mess. Fortunately the meds kicked in pretty quickly and he fell asleep. He hasn't moved for 7 hours now. We can hear him breathing here in the living room.
Steve arrived - hooray - the same time as Jessica, so he got to see how the bathing, sheet changing and medication is done. He and Dave stayed here this afternoon while I went out to do a few errands. We had the Harry & David chicken pot pie sent by David for dinner tonight. Here's a recommendation - when someone needs comfort food, this is it! The crust was delicious, and it was FULL of chicken - no peas - just the way I like it. It came with a package of chicken gravy, too. Thanks, David.
Steve brought his homemade beef jerky, Rita sent some goodies, including some cranberry bread and brie cheese. I know what I'm having for lunch tomorrow! Oh, there is also a vegetable soup. I guess that will be dinner! Thanks, Rita.
We've put clean sheets on Steve's bed and gave him all the instructions we can think of, but most importantly he has our phone number. When Dad does wake up, he will need his new doses of meds, and it's too hard for one person to do it now. He knows to call us!
Molly, Chad and the boys stopped by earlier. They rented a golf cart for the weekend - all the Trick-or-Treating is done by golf cart here to avoid traffic jams in the one section of our development that goes all out for Halloween. The boys had their Halloween parade at school today, so they are READY for trick-or-treating.
As I'm wrapping this up for the day, we have the WVU-UConn game on, but we just heard Dad, so now it really is time to stop.
PS I hadn't pushed the Publish button, so here is the follow-up. It's been an hour since Dad woke up. He got his meds, and he was saying Food, Food, Food, so we brought out the Jello, pudding and some jars of baby food fruit. He ate more than we've seen him eat in the last 5 days put together! He also had a fair amount of water. We actually were concerned he'd get a stomach ache, as he ate about a cup of food, whereas he's been eating a few spoonfuls a day. Another rally. Dad is a very tough guy. He is lying down again, but talking to Charlie (?).
I know I tend to analyze and analyze. I can't help but wonder what we can do to help Dad, and I think if I could only understand what was going on, we could make it easier for him. Maybe not, but I want to try.
Dad slept for 5 hours, and woke up at 12:30, just has his massage therapist arrived. He wanted to sit up. Trina oiled up her hands with a luscious smelling rosemary cream, and she worked mostly on his back. He was confused, as he liked it, but kept asking, Why are you doing this to me? He finally relaxed, laid down and Trina was massaging his scalp when Jessica the nursing assistant arrived. Charisse is still out with a hurt back.
Jessica was very nice to Dad, and very efficient, but didn't spend the time Charisse does. Dad was all clean, his sheets were changed, he got new morphine patches and his thorazine. He kept asking where he was, and saying please don't hurt me (me: boo hoo) though of course Jessica and Trina were very gentle with him. I think when his pain meds wear off, he is just a mess. Fortunately the meds kicked in pretty quickly and he fell asleep. He hasn't moved for 7 hours now. We can hear him breathing here in the living room.
Steve arrived - hooray - the same time as Jessica, so he got to see how the bathing, sheet changing and medication is done. He and Dave stayed here this afternoon while I went out to do a few errands. We had the Harry & David chicken pot pie sent by David for dinner tonight. Here's a recommendation - when someone needs comfort food, this is it! The crust was delicious, and it was FULL of chicken - no peas - just the way I like it. It came with a package of chicken gravy, too. Thanks, David.
Steve brought his homemade beef jerky, Rita sent some goodies, including some cranberry bread and brie cheese. I know what I'm having for lunch tomorrow! Oh, there is also a vegetable soup. I guess that will be dinner! Thanks, Rita.
We've put clean sheets on Steve's bed and gave him all the instructions we can think of, but most importantly he has our phone number. When Dad does wake up, he will need his new doses of meds, and it's too hard for one person to do it now. He knows to call us!
Molly, Chad and the boys stopped by earlier. They rented a golf cart for the weekend - all the Trick-or-Treating is done by golf cart here to avoid traffic jams in the one section of our development that goes all out for Halloween. The boys had their Halloween parade at school today, so they are READY for trick-or-treating.
As I'm wrapping this up for the day, we have the WVU-UConn game on, but we just heard Dad, so now it really is time to stop.
PS I hadn't pushed the Publish button, so here is the follow-up. It's been an hour since Dad woke up. He got his meds, and he was saying Food, Food, Food, so we brought out the Jello, pudding and some jars of baby food fruit. He ate more than we've seen him eat in the last 5 days put together! He also had a fair amount of water. We actually were concerned he'd get a stomach ache, as he ate about a cup of food, whereas he's been eating a few spoonfuls a day. Another rally. Dad is a very tough guy. He is lying down again, but talking to Charlie (?).
Thursday, October 28, 2010
Thursday - Relief
Dad has been sleeping soundly for almost 4 hours - finally. He has been extremely restless, having terrible delusions, and bad dreams. After I wrote my blog entry last night, he told me I had to find a way to kill him, that he couldn't live this way any longer. I had very mixed emotions. Of course there was no way in the world I could have killed him, but in a sense, I was relieved to know he knew the end was near and he wanted it to come sooner rather than later. The most troubling to me was how upset he was. I gave him his dose of anti-anxiety medication, then 2 hours later his anti-psychotic medication and his morphine. He fell into a deep sleep that lasted 6 hours. I slept well, too. Then at 5 AM he was yelling for help. He thought he was in a box, he referred to it as a tomb one time, full of snakes. I got him calmed down, but the restlessness and agitation went on all day. He wanted to sit up, but would get so exhausted he had to lie down, but he couldn't sleep. Then he wanted to sit up ...
He ate one bite of pudding and had less than a cup of water all day. We know he's getting parched, and I keep giving him eye droppers of water, but it's hard to get him to swallow. It's not that he can't swallow, it's more that he forgets to. I tell him to swallow but it's hard for him to follow instructions. He does not ask for food or water, except occasionally he says he wants a hamburger.
This afternoon he had more pain than we've seen, curling up and moaning, so Dave called Hospice again. They gave us directions to greatly increase his morphine, and Beth came right over with suppositories for the anti-psychotic medicine (so he could relax and would quit seeing snakes, bugs, his friend Johnny that died - and evidently left behind in WWII - people in the room watching him, etc.) He fell asleep after the morphine, so we have yet to use the thorazine.
Beth told us our choice is between Dad having pain and hallucinations, or perhaps being comatose. We are choosing comatose, though he is not there yet. I should say we will choose comatose if that's all we can do to relieve his pain.
Chad stopped by tonight. He told us a few interesting things, like patients with this same "terminal agitation" often yell out things but he's not convinced they believe it themselves. That reminded me that when Dad would say he's stuck, and I told him he's not, that he is free, he had enough sense to recognize I was giving him "psychological sh*t." :-) Several times, he asked me who those people are in his room. Mostly I would say, There's no one here, just me." Yesterday I said, "They are angels." He turned to me and said, "Horsesh*t."
He can be delusional, but the second I make up a story, he recognizes it!
I don't know if he had a friend named Johnny that died and was left behind somewhere during the war, but I do know the concept is a nightmare for Dad. I constantly reassure him we are with him and will not leave him alone.
I told Chad about Dad's minimal intake of food and water. He said dehydration can result in a type of euphoria rather than distress. I just googled "dehydration near death" and the few articles I read have made me feel better about it. Information is good. Lack of information is scary.
Since starting this, Dad woke up, I did my first suppository planting (sure hope I got it right!), talked to Steve about his visit tomorrow, and Dave is talking to Dad trying to get him calm and restful for the evening. I need to go help.
He ate one bite of pudding and had less than a cup of water all day. We know he's getting parched, and I keep giving him eye droppers of water, but it's hard to get him to swallow. It's not that he can't swallow, it's more that he forgets to. I tell him to swallow but it's hard for him to follow instructions. He does not ask for food or water, except occasionally he says he wants a hamburger.
This afternoon he had more pain than we've seen, curling up and moaning, so Dave called Hospice again. They gave us directions to greatly increase his morphine, and Beth came right over with suppositories for the anti-psychotic medicine (so he could relax and would quit seeing snakes, bugs, his friend Johnny that died - and evidently left behind in WWII - people in the room watching him, etc.) He fell asleep after the morphine, so we have yet to use the thorazine.
Beth told us our choice is between Dad having pain and hallucinations, or perhaps being comatose. We are choosing comatose, though he is not there yet. I should say we will choose comatose if that's all we can do to relieve his pain.
Chad stopped by tonight. He told us a few interesting things, like patients with this same "terminal agitation" often yell out things but he's not convinced they believe it themselves. That reminded me that when Dad would say he's stuck, and I told him he's not, that he is free, he had enough sense to recognize I was giving him "psychological sh*t." :-) Several times, he asked me who those people are in his room. Mostly I would say, There's no one here, just me." Yesterday I said, "They are angels." He turned to me and said, "Horsesh*t."
He can be delusional, but the second I make up a story, he recognizes it!
I don't know if he had a friend named Johnny that died and was left behind somewhere during the war, but I do know the concept is a nightmare for Dad. I constantly reassure him we are with him and will not leave him alone.
I told Chad about Dad's minimal intake of food and water. He said dehydration can result in a type of euphoria rather than distress. I just googled "dehydration near death" and the few articles I read have made me feel better about it. Information is good. Lack of information is scary.
Since starting this, Dad woke up, I did my first suppository planting (sure hope I got it right!), talked to Steve about his visit tomorrow, and Dave is talking to Dad trying to get him calm and restful for the evening. I need to go help.
Wednesday, October 27, 2010
Wednesday - Worrisome Agitation
Dad (and Dave) had a tough night last night. From midnight to 4 AM Dad was very agitated, kicking off his covers, wanting to take off his t-shirt and pants, asking for a knife to cut away his clothes -- he believed he was caught, and stuck on barbed wire or something, and he could not get away. Sometimes he thought he was in a prison. Even after getting his meds, it took quite a while for him to calm down and sleep again.
When I came over at 8 in the morning, he sat on the side of the bed and we administered his morning pills (crushing them and putting them in water). He then easily let me feed him half a bowl of Cream of Wheat. He was tired, so we got him situated in bed (which involves getting him to lie down then moving him up towards the head of the bed using a sheet under him, as he cannot move himself - at 6' tall he needs to have his head only a few inches from the top. It's difficult for the two of us to move him.) He talked and half-slept for only an hour before he wanted up again.
He was still kicking off his covers, trying to rip away his shirt, and wanted scissors to cut his pants. I had to wonder if this dream was metaphorically related to being stuck on Earth (call me crazy). I told him that being stuck is only in his mind, that he really is free, that he needs to concentrate on happy thoughts and don't think he is stuck. I am saying all this as he is pulling at this shirt, moaning (but breathing fine, he was not gasping for breath), and telling me to help him get free. Finally, he says to me, Don't give me that psychological sh*t.
I gave him a good wash up, including shampoo, and he seemed very relaxed, until he laid down again. He talked and talked, sometimes aware I was there, sometimes when I thought he didn't notice, I left for a little while until I heard him talking louder.
At 2 PM our Hospice nurse Beth arrived. Since Dad hadn't had a BM for 6 days (though he has eaten hardly anything) she needed to alleviate that problem. Fortunately Dad was very cooperative. He kept asking for a doctor, though, as he felt we didn't know what we were doing. Eventually, the conversation came around to his dying. Beth was very sensitive and let Dad lead the conversation.
We finally got him settled back in bed, calm and with his covers - until Beth left, and the same agitation started all over again. Keep in mind, Dad had not slept soundly since midnight, and he normally takes a good long nap mid-morning and in the afternoon.
I sat with him longer - Other than when Beth was here, I was at his side virtually all day. This time he wanted me to give him a gun so he could shoot himself. He was actually the most lucid I had heard him in days. He said it was his plan to shoot himself if he was sick, but he let this sickness go too long and now he is too weak to get his gun. He told me Dave and I should give him his gun, then leave the room, then no one will know who to blame when it's all over. I've been telling him I don't have a gun, and he's going to have to let his life run its course. He says he will have to think of some other way.
He had his 'dinner' of pears and pudding and his evening pills, but has been restless ever since. We called Hospice to see what can be done, and they suggested we increase his anti-anxiety medication. I tell you what, it's hard enough to see Dad in this physically declining state, but to have him so agitated he can't sleep, with the awful dreams, makes it even harder. I have another 30 minutes before I can give him his next dose, so I'll go talk to him for a while longer.
When I came over at 8 in the morning, he sat on the side of the bed and we administered his morning pills (crushing them and putting them in water). He then easily let me feed him half a bowl of Cream of Wheat. He was tired, so we got him situated in bed (which involves getting him to lie down then moving him up towards the head of the bed using a sheet under him, as he cannot move himself - at 6' tall he needs to have his head only a few inches from the top. It's difficult for the two of us to move him.) He talked and half-slept for only an hour before he wanted up again.
He was still kicking off his covers, trying to rip away his shirt, and wanted scissors to cut his pants. I had to wonder if this dream was metaphorically related to being stuck on Earth (call me crazy). I told him that being stuck is only in his mind, that he really is free, that he needs to concentrate on happy thoughts and don't think he is stuck. I am saying all this as he is pulling at this shirt, moaning (but breathing fine, he was not gasping for breath), and telling me to help him get free. Finally, he says to me, Don't give me that psychological sh*t.
I gave him a good wash up, including shampoo, and he seemed very relaxed, until he laid down again. He talked and talked, sometimes aware I was there, sometimes when I thought he didn't notice, I left for a little while until I heard him talking louder.
At 2 PM our Hospice nurse Beth arrived. Since Dad hadn't had a BM for 6 days (though he has eaten hardly anything) she needed to alleviate that problem. Fortunately Dad was very cooperative. He kept asking for a doctor, though, as he felt we didn't know what we were doing. Eventually, the conversation came around to his dying. Beth was very sensitive and let Dad lead the conversation.
We finally got him settled back in bed, calm and with his covers - until Beth left, and the same agitation started all over again. Keep in mind, Dad had not slept soundly since midnight, and he normally takes a good long nap mid-morning and in the afternoon.
I sat with him longer - Other than when Beth was here, I was at his side virtually all day. This time he wanted me to give him a gun so he could shoot himself. He was actually the most lucid I had heard him in days. He said it was his plan to shoot himself if he was sick, but he let this sickness go too long and now he is too weak to get his gun. He told me Dave and I should give him his gun, then leave the room, then no one will know who to blame when it's all over. I've been telling him I don't have a gun, and he's going to have to let his life run its course. He says he will have to think of some other way.
He had his 'dinner' of pears and pudding and his evening pills, but has been restless ever since. We called Hospice to see what can be done, and they suggested we increase his anti-anxiety medication. I tell you what, it's hard enough to see Dad in this physically declining state, but to have him so agitated he can't sleep, with the awful dreams, makes it even harder. I have another 30 minutes before I can give him his next dose, so I'll go talk to him for a while longer.
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