A Prayer for the Dying

mswijiknyc said:

one hot mess
again, I have words to describe what's going on, but use of them will get me flagged, post pulled, and most likely banned.

I am a stressed out frazzled mess. There are soooo many things that are not done that I'm trying to get done, he's on me constantly to do things and do them HIS WAY, and then I have a whole new set of people at hospice that I have to learn names for.

I have no time to take care of myself. He just yelled at me for everyone treating him special and how hard everything is. I have no idea what to do anymore.

Sorry for complaining. I am just so tired.

Don't apologize for being a loving woman...
About a month ago my love's Onc brought up Hospice. I had researched about it, as I knew that some day we would need and use their help. My love had been dx with extensive sclc in April 2010. He had a difficult time accepting the idea as he didn't know that they could make difficult times easier for both of us. He thought it was just about dying. For two weeks when they began to come for visits, he was doing ok. One week before he passed away, he began to feel pain, was not eating and generally not feeling well. This was about the 10th of Dec. Yes, it was a circus here at the beginning of hospice, appts. for enrollment, intros to his nurse, social worker and chaplain. I just wrote down their names and positions. Around the 17th, my love began to leave this world. We had decided a while back that it may be better for me that he pass at the hospice instead of at home. Through that weekend my precious daughter was here and was able to care for her daddy, meds, bathing, assisting in walking. We did shifts as my love began to transition and became quite restless at times. At any point that we had a question, worry or concern, hospice was a phone call away. In the middle of Sunday night his pain began to intensify and I just called them, they gave me morphine instructions and to go ahead and put him on the oxygen to help and make him more comfortable. When they first came out weeks before they had ordered and placed meds and oxygen equipment. No one believed that we would be needing these so soon. By early morning my love's nurse arrived. His pain was getting a bit stronger so she ordered the "big guns" pain meds which were delivered to our door in less than 30 minutes. I phoned family and friends and soon my close family began to arrive. The chaplain arrived. My daughter and I had not slept in over 48 hrs. With my love in no pain and resting, we were able to sleep for a few hrs., knowing that he was being taken excellent care of by his nurse, and being loved and prayed for by our family. Yes, at 8:30 pm on Monday the 20th he left this world. His final hours were pain free. Sadly, no more words from him, but the whole 2 days before he repeatedly said how much he loved and adored me. Loved our children and grandbaby. As he took his last breaths, our room was filled with love and a calm. Yes we all cried, yes our hearts were breaking. I am so glad that a greater power made the decision for my love to pass in his home, in our bed. The bed that we loved in, shared in, argued in and spent many beautiful hours of our lives in. Nothing could have been more natural. And now I feel so much comfort and love in my bed. It is a very special place for me now, and I have not felt uneasy or traumatized by it. Of course, this has been right for me, and may not be for anyone else.
I want to share with you what happened to me the last 3 days of his life. I, too, was over-stressed, not being appreciated at times, missing the joy that was our life before the "Beast" entered. But on those last days something came over me. The adrenaline, energy, grace from God, call it what you like, took every negative thought and feeling away. I was being given the honor and gift to be the one to care and love this man that had cared and loved me for almost 30 yrs.! I was the one to administer meds to ease his pain. I bathed him. I gave him ice chips and put chap stick on his lips. All the time telling thank you for all the years of our lives together. Did I cry? Yes. But soon that "grace" I told you about would calm my tears and hurt. When he passed away, both my children and I were in the bed with him, with the rest of the family surrounding us. We played Keith Urban's "Making Memories Of Us", a song my love really felt touched his life. The passed 8 months of the struggle with the "Beast" were over. All the strife and conflict gone. Just peace and love floated in our room.
Be kind and patient with yourself. As this song says "you've been stretched to the limit". Embrace Hospice, as with their assistance you may be able to give a little to yourself, so that when time comes you will be strong and be in a place of calm, where you will be able to be the loving woman that you have always been to him in his time of need.
It's been 2 weeks now, and I miss my love terribly. And I get angry. And I'm still tired. I guess because now I have to be my own caregiver, and love and comfort myself. I am surrounded by love from family and friends, but it doesn't take away the deep loss I feel. But I am able to say that I loved him, I honored him and cared for him to the end of his journey, and somehow that gives me comfort.
Sending you hugs and best wishes,
Lucy

mswijiknyc said:

Hospice at home
He came home December 30, yesterday. I will be keeping him at home for as long as I can. We are both thinking 6 weeks or less. Thank you for the thoughts and prayers. Just trying to stay present and string for him.

I need a raise (not too bad yet. Humor is still there:))

Here
I haven't been here for awhile and am mostly lurking now. Since I went through this with my husband, I have some understanding of what you are feeling. Know my thoughts and prayers are with you. Fay

luz del lago said:

Don't apologize for being a loving woman...
About a month ago my love's Onc brought up Hospice. I had researched about it, as I knew that some day we would need and use their help. My love had been dx with extensive sclc in April 2010. He had a difficult time accepting the idea as he didn't know that they could make difficult times easier for both of us. He thought it was just about dying. For two weeks when they began to come for visits, he was doing ok. One week before he passed away, he began to feel pain, was not eating and generally not feeling well. This was about the 10th of Dec. Yes, it was a circus here at the beginning of hospice, appts. for enrollment, intros to his nurse, social worker and chaplain. I just wrote down their names and positions. Around the 17th, my love began to leave this world. We had decided a while back that it may be better for me that he pass at the hospice instead of at home. Through that weekend my precious daughter was here and was able to care for her daddy, meds, bathing, assisting in walking. We did shifts as my love began to transition and became quite restless at times. At any point that we had a question, worry or concern, hospice was a phone call away. In the middle of Sunday night his pain began to intensify and I just called them, they gave me morphine instructions and to go ahead and put him on the oxygen to help and make him more comfortable. When they first came out weeks before they had ordered and placed meds and oxygen equipment. No one believed that we would be needing these so soon. By early morning my love's nurse arrived. His pain was getting a bit stronger so she ordered the "big guns" pain meds which were delivered to our door in less than 30 minutes. I phoned family and friends and soon my close family began to arrive. The chaplain arrived. My daughter and I had not slept in over 48 hrs. With my love in no pain and resting, we were able to sleep for a few hrs., knowing that he was being taken excellent care of by his nurse, and being loved and prayed for by our family. Yes, at 8:30 pm on Monday the 20th he left this world. His final hours were pain free. Sadly, no more words from him, but the whole 2 days before he repeatedly said how much he loved and adored me. Loved our children and grandbaby. As he took his last breaths, our room was filled with love and a calm. Yes we all cried, yes our hearts were breaking. I am so glad that a greater power made the decision for my love to pass in his home, in our bed. The bed that we loved in, shared in, argued in and spent many beautiful hours of our lives in. Nothing could have been more natural. And now I feel so much comfort and love in my bed. It is a very special place for me now, and I have not felt uneasy or traumatized by it. Of course, this has been right for me, and may not be for anyone else.
I want to share with you what happened to me the last 3 days of his life. I, too, was over-stressed, not being appreciated at times, missing the joy that was our life before the "Beast" entered. But on those last days something came over me. The adrenaline, energy, grace from God, call it what you like, took every negative thought and feeling away. I was being given the honor and gift to be the one to care and love this man that had cared and loved me for almost 30 yrs.! I was the one to administer meds to ease his pain. I bathed him. I gave him ice chips and put chap stick on his lips. All the time telling thank you for all the years of our lives together. Did I cry? Yes. But soon that "grace" I told you about would calm my tears and hurt. When he passed away, both my children and I were in the bed with him, with the rest of the family surrounding us. We played Keith Urban's "Making Memories Of Us", a song my love really felt touched his life. The passed 8 months of the struggle with the "Beast" were over. All the strife and conflict gone. Just peace and love floated in our room.
Be kind and patient with yourself. As this song says "you've been stretched to the limit". Embrace Hospice, as with their assistance you may be able to give a little to yourself, so that when time comes you will be strong and be in a place of calm, where you will be able to be the loving woman that you have always been to him in his time of need.
It's been 2 weeks now, and I miss my love terribly. And I get angry. And I'm still tired. I guess because now I have to be my own caregiver, and love and comfort myself. I am surrounded by love from family and friends, but it doesn't take away the deep loss I feel. But I am able to say that I loved him, I honored him and cared for him to the end of his journey, and somehow that gives me comfort.
Sending you hugs and best wishes,
Lucy

Hugs to you
Lucy,
I'm sure because of your love and the love of your kids, that your hubby was able to go in peace knowing that you'd be okay.
I am still sleeping with one of the last shirts that Tom had worn. Haven't even washed it cause I can still smell his aftershave on it. Is this crazy?? But I give you so much credit for being able to sleep in the same bed that he died in. I hate even looking at the bathroom floor where I laid him down while he was collapsing. Everything happened so fast we didn't have a chance to say goodbye.
We're lucky to have great kids, cause I'd hate to have to go through this without them, wouldn't you?? They and my 3 grandsons are what helps to keep me going. I miss Tom so much and can't believe it'll be a year in March since I lost him.
Take care and keep coming to this sight.
Carole

luz del lago said:

Don't apologize for being a loving woman...
About a month ago my love's Onc brought up Hospice. I had researched about it, as I knew that some day we would need and use their help. My love had been dx with extensive sclc in April 2010. He had a difficult time accepting the idea as he didn't know that they could make difficult times easier for both of us. He thought it was just about dying. For two weeks when they began to come for visits, he was doing ok. One week before he passed away, he began to feel pain, was not eating and generally not feeling well. This was about the 10th of Dec. Yes, it was a circus here at the beginning of hospice, appts. for enrollment, intros to his nurse, social worker and chaplain. I just wrote down their names and positions. Around the 17th, my love began to leave this world. We had decided a while back that it may be better for me that he pass at the hospice instead of at home. Through that weekend my precious daughter was here and was able to care for her daddy, meds, bathing, assisting in walking. We did shifts as my love began to transition and became quite restless at times. At any point that we had a question, worry or concern, hospice was a phone call away. In the middle of Sunday night his pain began to intensify and I just called them, they gave me morphine instructions and to go ahead and put him on the oxygen to help and make him more comfortable. When they first came out weeks before they had ordered and placed meds and oxygen equipment. No one believed that we would be needing these so soon. By early morning my love's nurse arrived. His pain was getting a bit stronger so she ordered the "big guns" pain meds which were delivered to our door in less than 30 minutes. I phoned family and friends and soon my close family began to arrive. The chaplain arrived. My daughter and I had not slept in over 48 hrs. With my love in no pain and resting, we were able to sleep for a few hrs., knowing that he was being taken excellent care of by his nurse, and being loved and prayed for by our family. Yes, at 8:30 pm on Monday the 20th he left this world. His final hours were pain free. Sadly, no more words from him, but the whole 2 days before he repeatedly said how much he loved and adored me. Loved our children and grandbaby. As he took his last breaths, our room was filled with love and a calm. Yes we all cried, yes our hearts were breaking. I am so glad that a greater power made the decision for my love to pass in his home, in our bed. The bed that we loved in, shared in, argued in and spent many beautiful hours of our lives in. Nothing could have been more natural. And now I feel so much comfort and love in my bed. It is a very special place for me now, and I have not felt uneasy or traumatized by it. Of course, this has been right for me, and may not be for anyone else.
I want to share with you what happened to me the last 3 days of his life. I, too, was over-stressed, not being appreciated at times, missing the joy that was our life before the "Beast" entered. But on those last days something came over me. The adrenaline, energy, grace from God, call it what you like, took every negative thought and feeling away. I was being given the honor and gift to be the one to care and love this man that had cared and loved me for almost 30 yrs.! I was the one to administer meds to ease his pain. I bathed him. I gave him ice chips and put chap stick on his lips. All the time telling thank you for all the years of our lives together. Did I cry? Yes. But soon that "grace" I told you about would calm my tears and hurt. When he passed away, both my children and I were in the bed with him, with the rest of the family surrounding us. We played Keith Urban's "Making Memories Of Us", a song my love really felt touched his life. The passed 8 months of the struggle with the "Beast" were over. All the strife and conflict gone. Just peace and love floated in our room.
Be kind and patient with yourself. As this song says "you've been stretched to the limit". Embrace Hospice, as with their assistance you may be able to give a little to yourself, so that when time comes you will be strong and be in a place of calm, where you will be able to be the loving woman that you have always been to him in his time of need.
It's been 2 weeks now, and I miss my love terribly. And I get angry. And I'm still tired. I guess because now I have to be my own caregiver, and love and comfort myself. I am surrounded by love from family and friends, but it doesn't take away the deep loss I feel. But I am able to say that I loved him, I honored him and cared for him to the end of his journey, and somehow that gives me comfort.
Sending you hugs and best wishes,
Lucy

thanks so much
Lucy, I am so sorry for your loss, but so glad you shared your beautiful story. It brought back my father's last days, which were much more peaceful that what had come before. His last night, I sang him hymns for long enough so that's what I remember now. It's good.

mswijiknyc said:

doors and windows
I personally am doing ok. The HHA came yesterday so that's a weight off. But I'm starting to see the decline. It hurts and scares me and makes me angry. All I can do is love him and be with him.

Had friends planning on visiting today - just told me to tell them not to come; come tomorrow. When I called them, they said next week. It's interesting to try to get across to someone that you need to see him now before he gets worse with out saying exactly that because he is sitting right beside me.

He started using his walker.

Crap.

Wish I could
April, Wish I cold say something that would help you. I feel the same fear and hurt when I see my husband decline or when he can't do something he used to do so easily. Just keep loving him and being with him. In the end, that's what matters.

Many hugs.

mswijiknyc said:

doors and windows
I personally am doing ok. The HHA came yesterday so that's a weight off. But I'm starting to see the decline. It hurts and scares me and makes me angry. All I can do is love him and be with him.

Had friends planning on visiting today - just told me to tell them not to come; come tomorrow. When I called them, they said next week. It's interesting to try to get across to someone that you need to see him now before he gets worse with out saying exactly that because he is sitting right beside me.

He started using his walker.

Crap.

crap
april, i know what you mean, about not being able to say, "you need to come now, before it's too late". much love and thoughts for you and pat! i know i don't really know you but feel that if we lived close we would be great friends. here's hoping for a good day for you both.

cheri

Sorry
I am so sorry. I can only imagine how hard this is on you. I know it sounds selfish, but it almost makes me glad my mother went so quickly and unexpectedly.. yes she had cancer(uterine) yes stage IV but she was going for treatments, we were told those treatments were working and then suddenly she was in the hospital in horrible pain and there was "nothing they could do" so they stuck her in the Palliative ICU . She didn't last the day. We can all guess the words you don't have to say them. I've said them many times .. My BIl passed away at home this past August from esoph. cancer. He refused to go to hospice..I think he was in denial till the end. He didn't want to die, who does when they are 58. My SIL took care of him at home.. but it took a toll on her even with 2 grown stepsons, her BIL and his best buddy and a few other close friends helping.. running errands, staying with him so she could work. she worked up until 2 wks before he passed... she saw the signs that his time was running out.. change in breathing, sleeping more and more, throwing up more.. I wish for a peaceful painless passing for your husband. I pray that God continues to give you strength.
Hugs, Cindy