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califsand

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Yesterday the hospice nurse told me that my father is changing, oxygen level is low (80 with or without the oxygen on) and staring into the distance a lot. Last night I got a call and was told to come, he was having severe trouble breathing. I went and he was struggling and forcing himself to breathe each breath. He was very anxious and we gave him several doses of morphine over the next few hours, on top of the morphine pump. He stopped breathing several times while I was there but began breathing again on his one with a tap on the shoulder from the nurse. He's had that happening throughout the day today but is much more comfortable because of medication. In fact, we have doubled the dose that he is getting through the morphine pump in order to help him to be less anxious.

Today I called all of my siblings and told them to go see him, the nurses and Dr. don't think he will make it through the night... I told my Dad finally that it is okay for him to let go, that he will be okay and so will I. When I went today he just locked eyes with me and wouldn't blink or look away for several minutes. I just said "I know you love me, I love you too". Even though all the staff think that he is on the brink of letting go, he has scared me before and then improved. I just can't believe that he may die in the next couple of days... ironic how the mind works isn't it? I know he's dying, I know he is in the final stages of the illness, last night I watched him stop breathing for up to 20-30 seconds at a time, but part of me doesn't believe that he will ever die. When he stopped breathing I thought "finally he has some peace" and then the nurse would touch him and say "Tom, you need to breathe" and I would want to tell him to leave my Dad alone but then Dad would take a breath and I would realize that I was holding my breath during it and breathe in relief that he is still here. I'm a mess :( He improved last night after a while and today he is still having trouble but it is not as labored. I came home to take a nap and have found that almost impossible. I guess that I will go back over there and be with him...
 

BethU

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I told my Dad finally that it is okay for him to let go, that he will be okay and so will I. When I went today he just locked eyes with me and wouldn't blink or look away for several minutes. I just said "I know you love me, I love you too".

Sandi, I'm so sorry you are having to go through this, but bless you for giving your dad the love and support he needs. So glad they have managed his care so that he is comfortable and at peace.

Praying that the end will be easy for your dad ... and you.
BethU
 

Icanmanz

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Praying for your dear Dad, and the entire family. God bless!

Irma
 

brendapals

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Sand-

I will keep you in my prayers, and God be with you and your family this week. I pray that you get some rest too girl!
Keep the faith,
You have done a remarkable job with your Dad!
brenda
 

califsand

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Well, Dad has stabilized again. Talk about yoyo huh? With a good combo of medications and some changes (we are no longer going to give him alcohol at night) he was breathing much better yesterday. Despite the heavy dose of meds he is on he is still very alert and acknowledged each visitor & even cried a little when he saw my sister-in-laws big pregnant belly. He got visits from my brothers & their wives and also my mother last night. My favorite nurse & aide were working last night and will be there tonight, which eases my mind because he is always fine when they are there. They know all of the subtle things to watch for & treat before it balloons. Unfortunately the rest of the week will be a newer nurse and he doesn't know all of those subtleties...

My stomach is in knots but I'm heading to work, can't miss a day right now no matter how badly I don't want to be there. The immediate crisis has passed and now we are back to the daily crisis that I should be used to by now but I'm not.

Thanks for your kind words, it helped to vent.

Sandy
 

CindyM

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Sometimes venting is the only thing that works, Sandy. I am glad he has leveled off, though. Cindy
 

brooksea

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Sandy,

Hope everything is still Ok with your Dad. I'm thinking of you and your family. I hope he is able to see his new grandchild after your SIL gives birth...
 

mndireland

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HI Sandi,
Great to see your dad pulling through the hard times and Im sure he's glad that you are there all the time. Things are hard on you but you are soo strong and such an inspiration for the rest of us trying to look after our sick parents. Your strength inspires me to carry on and look after my mother much better. Every extra moment is precious.

Take care
 

califsand

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Hi everyone,

Dad has leveled off... he's sedated and the staff at Hospice consider him to be "peaceful" and "comfortable". Much better than in pain and stressed out. He is looking off into space a lot or sleeping but I haven't seen any stress on his face since we last increased the morphine. It is terribly hard to see him like this and I hate the dreaded calls from people asking how he is... I'm afraid that I can hardly talk about it at this point and have been avoiding the phone. I'm just so drained from this battle and hate to feel that way but it has been going on for SO long now. I can't even be very excited about the birth of my nephew and I SO want to be, it's a huge thing for me too for my closest sibling to finally become a father! But I am associating the birth of the baby with the upcoming death of my father and the reason that Dad is fighting so hard... I just can't handle seeing him go through this day after day for so long now. It's almost his 1 year anniversary since moving into Hospice and over 6 years since the illness presented itself. His illness defines my life and I love him dearly and don't regret ANYTHING, but I am very tired. I've been there a lot extra lately and middle of the night visits always work me over. I feel totally traumatized, am I the only one that gets that way?

Have a good day, I have to get to work. TGIF!
 

CindyM

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I feel totally traumatized, am I the only one that gets that way?

Nope. The middle of the night visits will do that to you. But I am glad he is stabalized. I hope you get some rest this weekend, Sandy! :-D
 

brendapals

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Sandy,
Yes, be thankful that your dad is resting. And then perhaps you can get some rest too. Our weather here is going to be beautiful for the weekend, I hope yours is too.
Keep the faith,
brenda
 

califsand

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Thanks,

Yes, the weather here is nice but it's been a bit muggy lately for my area... I'm in Southern California. Unfortunately I have lots of chores to do this weekend, haven't been home to clean my house in almost a month between work and time with my Dad. I am NOT thrilled and having a lazy morning in anticipation of cleaning in the summer heat :) Oh well, at least I have a good excuse for a messy house huh? lol, we all do!

Last night they told me that they want to insert a catheter & for once, my brother has an opinion. Brother wants them to do a condom cath first, he is adament, and kept apologizing for his strong feelings... I told him that I loved that he had strong feelings about it and that he was making a decision instead of me. It is a nice change of pace because I ask him his opinion all the time and he always says "you decide, I know you'll do the right thing"... and I hate always having the full burden. It made my day to have him make the choice with his strong feelings on the subject!

Today I will skip my visit with Dad & focus a little bit on my own life. My soon to be 10 year old stepdaughter needs a bra (so young ugh!) and so I get to participate in this rite of passage with her this weekend. Scary! I don't live with my husband and the kids and haven't been around as much as I would like, they moved out when Dad got to a point where he couldn't live alone and I moved them out and Dad in. A huge sacrifice that we all made... and an area where I do have some regrets. Mainly because my stepdaughter is hitting puberty and I'm mainly there on the phone only... anyways, this weekend we will go buy a good book about the body, go bra shopping and spend a while talking about changes that are going on with her. Scary scary scary but exciting at the same time to see my girl growing into a young woman (her mother is NOT in the picture so I'm the only woman in her life). I'm telling you, there can't be a high without a low...
 

Jeannie

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Enjoy bra shopping! I remember my first bra, ahhhh, I couldn't wait, now I wish I didn't have to wear one! LOL :) I believe that you need to take time for yourself or we as caregivers will all self destruct. I have been having massive back issues which my dr actually gave me vicodin for and my period was 3 weeks late, dr said due to excessive stress. I told my husband that I really need a break and someone else will have to pick up the slack with taking his mom this week. I feel terrible because they are really at a loss and are struggling finding someone to take her when her husband workds. I know I will probably end up doing it but I think my body is telling me enough is enough for right now.
Anyway, I am glad you are spending time with your daughter, have fun, they grow too fast don't they!
In Friendship
Jeannie
 

califsand

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Oh yes, yesterday was fun & interesting! We went and got a special book that talked to her about changes in her body, went bra shopping and then also got some feminine items. She handled it pretty well but had moments where she was silly or red in the face! Especially funny was her putting one of the bras on backwards lol. It was nice to have a girls day and to take the time to talk to her about what to expect in the next few years, I know she is well prepared! She's my stepdaughter & lives with her father so there is a chance that I may not be there during a critical moment but she will know exactly what to do about it and shouldn't be too scared. I think I did a pretty good job of having her feel more excited about growing up, than intimidated, embarassed, etc. which is how I felt...

I visited my Dad last night as well and those visits are getting shorter because he is sleeping quite a bit. We have him much more heavily medicated these days to prevent pain & discomfort and it is a bit disconcerting to see him so tired. I feel like my visits disturb him even though he does try to keep his eyes open and seems happy to see me. He knows I come by, even if I don't stay long, and that's what matters. I spend more time talking to the nurses now than being in his room. His breathing sounds loud and there is apnea (he stops breathing here & there) but it is only for a few seconds. Last night the nurse called me around 10 and it scared the heck out of me! Aparently they were watching the news & during the sports news they were talking about a member of one football team being traded to another and my Dad got upset, which the nurse thought was funny & wanted to share with me. Funny yes, but the call scared the heck out of me! They don't realize how much I live in fear of their phone number showing up on incoming calls, especially semi late at night. I almost didn't answer so that they would have to leave a message. Anyways, once my heart stopped racing I wanted to strangle the nurse but contained it because he only wanted to share a moment... jeeeeeeeeeez

I best go get ready for work. Take care!

Sandy
 

CindyM

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Sandy- your Dad and your family is lucky to have you in their lives. Sounds like you are doing a great job with your step-daughter. I hope you get some "Sandy- time" soon! Hugs, Cindy
 
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