Well, it hasn't even been a week since we got my stepdad on hospice and we are wondering if we are down to a matter of hours or days??
This disease is so unpredictable. He's been having increasing trouble breathing, swallowing, and the hospice nurse thinks he has pneumonia. The hospital bed and oxygen were delivered yesterday. He's not talking at all. Sleeps mostly around the clock. Thank God my sister is in town and is staying in town. It broke my heart. My 24 year old nephew drove up from Portland today and just cried and cried. I don't know why I'm not crying more??
I'm not trying **not** to cry, I'm just sort of.......numb I guess. At one point this afternoon when we were all sitting around my aunt made a comment that this all didn't seam real.......felt more like we were all in a movie. I remember feeling this same **surreal** way when my grandparents were close to dying.......I think it's some sort of shock mechanism meant to protect us.
Doesn't help that I woke up sicker than a dog yesterday!!?? Can hardly believe tomorrow is Friday. I've been too out of it to write, so wanted to let you all know what's happening. I'll check back as I'm able........thanks for being there. We had a visit from the hospice chaplain this morning and she gave my stepdad an anointing / blessing. Made me feel better anyway............
The following 4 users give hugs of support to: TC08 aras (12-30-2011), jagsmu (12-29-2011), Martha H (12-31-2011), xilch (01-09-2012)
TC ,I am sorry to hear how fast your stepfather is slipping away, I will be thinking of you and your family during this most difficult time, remember we are here for you so reach out and let's us give you the strength you are going to need..
Hugs judt
TC, I am so sorry your step dad has taken a turn for the worst but so very glad that you have Hospice and your sister for support! Just know that whatever you are feeling is good, normal, and ok! Please do not second guess yourself. You have been on this journey, side by side with your step dad for a long time. It does account for how you feel My wish for your step dad is for an easy journey and my wish for you is the strength and courage you will need to see him through the rest of his journey. Know my thoughts and prayers go with you!
I hope that his passing is peaceful. I agree that the numbness is protective, to let you handle the things that need to be taken care of at this time. I remember the numbness well. When my Mother died, it felt very unreal. I felt like she was just in another place, and I could still pick up the phone and talk to her at any time. Take care of yourself through this. You'll need your strength.
Thanks everyone for your caring replies. We're meeting with the hospice nurse this morning. Depending upon what she says, my sister might go back to Portland for now. That will be as hard on me as anything......but she's been great to be here all week, and her family has been driving back and forth too.
After the meeting I might come back home and rest for awhile. This is really exhausting. Love to all - Jan
The following 3 users give hugs of support to: TC08 luyingjie (01-24-2012), ninamarc (01-02-2012), sooziechen (12-30-2011)
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I am so glad your sister has been there with you. A burden shared is a bit lighter. Please do rest for a bit. There is no way to know how long this journey will be and you need to take care of yourself to see it through. The waiting is so mentally draining. I truly believe mental exhaustion surpasses physical exhaustion any day! Hold on to all the support you can find and remember to rest and eat!
Love, deb
The following user gives a hug of support to Gabriel: luyingjie (01-24-2012)
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I just went through hospice with my mother who died Dec.28th. Toward the end she slept without ever opening her eyes, ate nothing, drank nothing, and was on medical directives for this kind of care, pain only. Horribly sad and hard to deal with! The last night she had a gurgling in her chest indicating fluid in her lungs. The next morning she died.
The worst part was notification from the facility. I hope your experience is better. Hard to have someone call and ask if you want to see her one more time before she is taken for cremation...:-(
Hang in there...
The following user gives a hug of support to sooziechen: ninamarc (01-02-2012)
Well - we met with the hospice nurse this morning, and his body is beginning to shutdown. He's really not able to swallow anymore, so no more food, no more meds except for comfort meds they can put in his cheek (I didn't even know morphine came that way, but thank goodness it does).
I.......lost it......the tears came flooding out. It's about time!!! I went in and layed my head on his arm (he was sleeping) and bawled.....completely bawled. Between my cold and the crying, I got snot all over his shirt. I don't think he really cared though.
Reality is sinking in. That he's really dying......It's not some far off day in the future. It's pretty close now. My sister stayed in town. My niece too. Sure am glad I had clean sheets / blankets / extra pillows / aerobeds on hand! Ya never know when you're going to need that stuff!
I'm laying low at home right now. My sister and niece are with my stepdad. If I don't rest tonight I won't make it. I hate not being there, but I realize we may have a week or so ahead of us. Thanks all for being there. It means alot!!! Deb - you have been with me since the first day I came on this board. Looks like you're going to see me out too. I thank you from the bottom of my heart..........I am praying for strength for all of us......
The following 3 users give hugs of support to: TC08 jagsmu (12-30-2011), luyingjie (01-24-2012), sooziechen (12-31-2011)
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I am here for you TC I have been where you are once and will be there again in the future.... so I do know. Tears are good and your Step Dad didn't mind the snotty shirt at all. He knows the love you have for him... and that you cry for yourself. It is good that you let go and just let the emotions flow. Now sleep tonight. That is what you need. You have what you need ready for your sister and niece and now it's time for you. No, this is not an easy time but it is a time that you will survive, pass through, and know you have done well. You have let your Step Dad know how you love him and both of you will carry that forward. I am glad you have your sister and niece there to support you... and know I am here as well... as are all the rest here. I wish for you the courage and strength you will need to see you through
Love, deb
The following user gives a hug of support to Gabriel: luyingjie (01-24-2012)
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TC
I have been sitting here crying for the last hour, for you and the grief you are feeling, and for all of us who have a need to be posting here. Crying doesn't help our loved ones but is a way for us to decompress and retain the ability to go on. It is all in the hands of a higher power now and all we can do is be there to give love and comfort. My mother who is 91 has had Hospice on board since some time in August this year. She remains about the same, is still eating but keeps her eyes closed almost all the time. She sleeps a lot and is only up in a chair for brief periods. Her skin has started to break down and Hospice has provided an air mattress that relieves pressure areas on her body. Her nursing home has a wound care nurse and is treating the one pressure area on her lower spine and so far it is not getting larger. I fear the time when I will have to go through what you are going through now but don't want my Mom to suffer more than is necessary. Keeping us all in my prayers for peace and comfort.
aras
The following 2 users give hugs of support to: aras luyingjie (01-24-2012), ninamarc (01-02-2012)
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Jan I am so sorry you are going through all this pain. My thoughts and prayers have been with you all week, and I have been checking every day to see if there was further news. Hang in there. Try to take care of yourself. Get enough sleep even if you need a mild sleeping pill, and make yourself eat enough and drink water.
This is the end of the path for him but you have to go on. Numbness is a good mechanism and so is crying, both are OK. Let no one tell you how they think you should react!
Love and a big hug,
Martha
Last edited by Martha H; 12-31-2011 at 03:57 AM.
The following user gives a hug of support to Martha H: luyingjie (01-24-2012)
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Thanks Aras and Martha for your very caring replies. There were lots of tears yesterday - lots of prayers said - lots of "I love yous" exchanged. My stepdad is, as his caregiver called it, transitioning. It looks like a deep sleep, but we know he is in the process of dying. He's no longer responsive to any of us, but I know hearing is the last thing to go, and I believe he can still hear us, so I made sure to tell him I love him, and he was the greatest dad ever, several times yesterday.
My sister, niece and I went back over last night after having a bite to eat. It was nice to sit with him in the evening without everybody there. Our mom, other sister and aunt had gone home by then. I'll be heading back over there before too long, but appreciate being able to check in with all of you and thank you so much for your thoughts and prayers.
My love to all -
Jan
The following user gives a hug of support to TC08: luyingjie (01-24-2012)
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You are much as I was TC... I enjoyed the late hours when it was just Dad and I... the other sisters and nieces had gone home and I just sat and talked to Dad. Only once did he surprise me with a hand squeeze and that was when I ask if he trusted me to take care of Mom. So I am with you in my belief that they do still hear us even if they can not respond. I am glad you have your sister and niece for support and my prayers for you and your Step Dad remain the same... courage and strength with a gentle passing....
Know I keep all of you in my thoughts and prayers
Love, deb
The following user gives a hug of support to Gabriel: luyingjie (01-24-2012)
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Gabriel and Deb,
Hearing is the last sense to shut down, physiologically. So assuming someone who has lapsed into what appears to be a coma is probably not hearing is in error. My mother was able to squeeze my hands until the last 12 hours. By then her hands had curled up in rigidity, so I told her she could go now and rest.
Knowing all this helped me, so perhaps it helps you as well....
Susie
The following user gives a hug of support to sooziechen: luyingjie (01-24-2012)
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I has helped me many times Susie. Having see the end over and over I am a believer I had good conversation with my Dad before he passed and recently I was with my good friend as her Mom passed. I know Dad heard me (hand squeeze) and we know her Mom heard her as well. I too told Dad it was ok for him to go. I would be ok and promised to take care of Mom. I told him what a great Dad he was and how much I loved him. It was what carried me through losing my Dad. It is the time to talk to them and let the know just how you feel
Love, deb
The following user gives a hug of support to Gabriel: luyingjie (01-24-2012)
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Deb, I also think Mom knew what was coming the last time I helped her into bed because after breakfast she was really tired. We chatted on the bed as I lay next to her and held her hand. She said something so lucid as were most of her comments with me. She said, "You're going to need help with this." I asked her what she meant, but she was already closing her eyes to rest. I realized as I biked home that she knew she was dying so she knew I would need help with the end.
The last thing she said to me before she lapsed for the duration was <"What will happen to you?" That's the first time she ever worried about me or was concerned. These phrases run through my mind every day now, for she knew what was coming and worried about me.
We should all remember what is said last in these situations for they are impactful and insightful. They help us, but they are also clearing the deck for the person that is leaving.
Susie
The following user gives a hug of support to sooziechen: luyingjie (01-24-2012)
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Deb, I also think Mom knew what was coming the last time I helped her into bed because after breakfast she was really tired. We chatted on the bed as I lay next to her and held her hand. She said something so lucid as were most of her comments with me. She said, "You're going to need help with this." I asked her what she meant, but she was already closing her eyes to rest. I realized as I biked home that she knew she was dying so she knew I would need help with the end.
The last thing she said to me before she lapsed for the duration was <"What will happen to you?" That's the first time she ever worried about me or was concerned. These phrases run through my mind every day now, for she knew what was coming and worried about me.
We should all remember what is said last in these situations for they are impactful and insightful. They help us, but they are also clearing the deck for the person that is leaving.
Susie
The following user gives a hug of support to sooziechen: luyingjie (01-24-2012)
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I think Dad knew.... I am sure of it. The lucid moments close to the end, even in some that you would least expect, I consider a final gift.... and I have seen it repeatedly. Dad had his Tuesday Morning. My friends Mom "woke up" long enough to say "I love you". Sometimes it is a length of time with some awareness and other times it is simply a hand squeeze. It is time to "get it right". Those moments remembered can change a life time.
Love, deb
The following 2 users give hugs of support to: Gabriel luyingjie (01-24-2012), sooziechen (01-02-2012)
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TC...my heart is hurting for you. I can only imagine how you must be feeling. I'm praying for you. To everyone else here, you are all angels and I pray for you as well. God knew we would all need one another. I hope one day I can be as helpful as you all are, though I pray there's not a need.
__________________
When you let go of a hurt, YOU are the one set free! - Rick Warren
The following user gives a hug of support to Keysey: luyingjie (01-24-2012)
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My wish for your step dad is for an easy journey and my wish for you is the strength and courage you will need to see him through the rest of his journey. Know my thoughts and prayers go with you!
