Discussion Board Forums Supportive, Palliative & Hospice Care SENSITIVE-Dreaming & Talking

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  • #44743
    cherbourg
    Member

    Lainey,

    I’m holding you and Teddy close in my heart and prayers. Remember when you feel down, that you and Teddy discussed the move to the Hospice facility.

    You’ve always done what’s right for Teddy and you will continue. These coming days are the most stressful but the most precious.

    Sending love and hugs to you both.

    Pam

    #44742
    tommy
    Member

    Dear Lainy, I don’t post often but I visit everyday. I am so sorry for you and your husband Teddy. I only hope I can be as strong and honorable as you when it is time for my Judy to go home. Thank you for being here for me to lean on and learn from. Tommy

    #44741

    Thank you ladies for helping me understand what I will be seeing and trying to do in the future. I have learned so much from this site and it is not all “education” so much is comforting knowledge of how to cope and how to do so many things. I do not know how others handle disease without a site and online friends who know the pain and frustration you are dealing with.

    Bless you Lainy and missingwayne, I know it is so hard and you are both so brave and capable. Your thoughts, information and posts have been helpful to so many. Thank you and all of the others who post.

    #44740
    missingwayne
    Member

    Lainy, I am so glad to hear from you. I never even got it when they moved Wayne to hospice. Even before burial, I was waiting for him to sit up and just say I was kidding. Wayne had so much fluid build up, that he never looked thin, one time they took off ll liters of fluid which was 24 lbs., another time 16 liters which was 40 lbs.

    My couselor said that our lives were so intangled with each other that you couldn’t split us up. We were married for 35 years, he had a above knee amputation in 1990 and open heart surgery in 1999. I was his caregiver and best friend. We didn’t need anyone else we had each other and now, I have my dogs.

    It still feels like when I get home he should be there.

    I had heard about hospice, but this was my first real experience. Everyone that does this work are special people, they are God’s angels. We were only in patient for 27 hours, but they made it bariable. My Mom had hospice that came to the nursing home, but that was only for a week.

    As my counselor they have to have a special calling, I believe from God.

    God will look over you and Teddy, but if you need help don’t wait so long to get couseling like I did, I was at the point of ending it all. The couselor I use, uses a sliding scale, my income dropped 75% when God called Wayne home.

    God be with you and keep you tight in his hands.

    #44739
    lainy
    Member

    Thank-you Kimmie. Hospice is on there way and the decision I am sure will be made to move him today. He is going to be so upset but its for the best. I feel like today is the day he is dying! Sorry everyone. Will try to post tomorrow or tonight!

    #44738
    kimmie
    Member

    Lainy,

    I’ve been away from the board since before Thanksgiving. It was a tough time for our family not having Mom here for the holiday, and I’ve been keeping my mind busy with work and Christmas preparation, not much internet time.

    But I wanted to share what we experienced… What you describe sounds very similar to what my mother did the two weeks or so before she died. The confusion was first, which actually started when we were still on the family cruise. Once we were back home and she was in her comfy hospital bed, she slept a lot that first day, then more confusion, babbling, talking coherently but not making a lot of sense, calling out “Daddy.” Later that week she was staring more, almost like asleep with her eyes open. Agitation increased, she kept telling us to get her out of bed so she could go sit in the chair, which would’ve been impossible due to her weakness. By Friday, she spent most of her time asleep, which could have partially been due to all the medication. She died late Sunday afternoon, and we didn’t see any bluish signs until an hour or two before, and even then it was just her fingernail beds. Also that last day her hands and feet were cold.

    I don’t want to make anyone sad or worried, I just thought sharing our experiences may help someone reading now or down the road.

    #44737
    lainy
    Member

    Hello MissingWayne. I have been reading your posts and I just wish I could come right over, give you some hugs and share a cup of tea (I don’t like coffee). When I first read you were going for counseling I was so happy as I knew they would help and now I am happy they have. It is going to take some time. I have been prepared and ready for this and so far I am doing good. The hardest is today, when I will talk to Hospice about taking him to their facility. That is really facing the fact he will not be here soon. He is sleeping round the clock now, not eating, and yes, he has done all those hand movements and dreaming of others who have passed. What makes this harder is that he doesn’t seem to feel he is dying. He blames the medication for his sleeping and nausea.
    We made a deal in the beginning that I would keep him here as long as I could and that time is ending. I am a little gal and even though he is little now I just cannot handle him physically. I also am a little old Grandma of 70 and I am getting very tired. Don’t get me wrong I would do it all over again for him, it has been a very precious time.
    Do you think that because your husband was handicapped that you also miss the dependency he had on you?
    About the picking at the clothes I was told that is the “death roll”. Teddy has been doing it for 2 weeks now. This is some little stubborn Sicilian! I tell you.
    I also have the set of books from Hospice and yes, Teddy fits the description.
    I am ready,not happy about it, but so far he is as peaceful as he could be and that is all I asked for.
    My wish for you is to feel so much better and please keep visiting us often! We care.

    #44736
    missingwayne
    Member

    Lainy,

    My husband passed away nine months ago. We were only in hospice for 27 hours. The nurse ask my daughter and I if we had received the blue book yet, we said no and he brought us two copies. It is a small book only about 16 pages long, but tells what to expect from months to hours before death.

    As we looked through the book we could see nearly all the things that had already happened. One of the things is pulling at their clothing or bed sheets, pulling them from side to side, even looking under them. Also, he would reach up with his arm as to touch something, bring it back down and look into his hand and shake his head, he did this for several days. The last day he slept mostly, until the gurgle, a noise if you hear it you will never forget it. He gurgled for the last hours of life on earth.

    My advice is to find a couselor when you can, the couselor will seem like your best friend. Things that I can’t talk about even with my daughter who was also with me at the time when Jesus called him home, I can talk to her about it. It is very difficult to talk of that moment with anyone. My couselor has gone through alot of rough times with me in the last five months, she doesn’t give me answers she guides me to help find them. I was ready to give up and thought about ended the pain, and she talks me back to life.

    My Mom passed away last week, guess who shows up at the funeral home, you guessed my couselor, she wanted to check on me to see how I was doing. No one knew who she was, just me, but on another day that I could have gone all to pieces, she was there.

    Individual counseling is the best, I went to group for 6 weeks, it is hard to confide in a group, everyone takes grief in a different way. I always thought I was strong, I had to be, Wayne had been disabled for 22 years, but when it came down to it, I was like a new born kitten.

    #44735
    slittle1127
    Member

    Lainy – During my dad’s last hours, he held conversations with people he knew who had gone on before him and it was the most beautiful and peaceful experience for all of us. (I know I posted before, but wanted to add this) You know that my thoughts and prayers are with you. Blessings, Susan

    #44734
    legerashley
    Member

    Lainy, I am praying for you and your family. stay strong and patient. =)

    #44733
    legerashley
    Member

    Lainy, my mother did the same. They say its natural for someone to do this as they are dying. I would catch my mother gazing, I just thought of it as her looking at her new place in heaven. She also said that her dad would come to see her. Try not to question there thoughts, my mom took it as insult like we thought she was crazy. lol. its a beautiful thing.

    #44732
    slittle1127
    Member

    Lainy – I think I have mentioned that Randy has had numerous visits with angels and he has talked to them for up to an hour and a half at one time. He hasn’t talked in his sleep much lately. He has had more energy but is seriously agitated and angry. My aunt did not have blue nails or lips until the last few hours. My thoughts and prayers are with you. I think of you every day. I know you will hold Teddy close. Please tell him we are thinking of him and love him. Blessings, Susan

    #44731
    jennifers
    Member

    Thinking and praying for you and Teddy, Lainy – I hope you both have a few hours of quiet, dreamless sleep tonight.

    Lots of love.

    Jen

    #44730
    lainy
    Member

    Many, many thanks Pam. I remember asking you to ahve your dad watch for Teddy. Yes, my gut is telling me about 2 weeks more. I am so praying that he slips away like your dad. After what you told me I am thinking maybe I can be strong enough to handle this at home. No one ever mentioned a fever, perhaps I overlooked that in the Hospice booklet. Thank you so very much, Pam.
    Sometimes I think all of you on this Board are hand picked by a higher power!!!

    #44729
    pam
    Member

    Hi Lainy, remember that my dad recently past away. I told him days before he passed that he would have a new coffee shop buddy, Teddy, to solve world problems with in the near future.
    Teddy sounds a lot like where my Dad was weeks before he past away. We did not see blue coloration until hours before he died. He was, however, very jaundice so the coloration was hard to detect. My dad’s vitals were pretty good until a week before he died, too. He never pulled at his bed covers but he
    halluated and asked where my mom was several times. Adivan was the aniexty medication we gave him. It really worked well. My dad became so weak until he went into a coma until about eight days before he died. The congestion started as he went into the coma. We gave him congestion medication around the clock too. It helped to crush the aniexty and congestion medications when he could not longer swallow. We put them in his mouth with drops of water. I dont know if the Hospice nurse has told you, but most cancer patients will run fever closer to death. My dad did but we were able to uncover him to keep it down. The fever stayed low grade off and on for a couple of days. He kept his pain patch
    on and had liquid morphine around the clock.
    I don’t know if any of this helps, but my sister and I wanted to know when it
    would be his time. It is only natural to want to know! Our Hospice nurse said
    for us not to feel guilty about this. It was our protective nature and not

    wanting him to be in pain or be in distressed. I can honestly say he was comfortable. The only time he was semi alert was when he was given a bed bath. That was hard for him but necessary for him to rest. We just loved and reassured him that we would take excellent care of him. He was my dad, but I can’t imagine what you are going through with your husband. You are one brave amazing lady! Just know you are so special and you will have wonderful memories of your love for Teddy. I will be thinking of you in the upcoming weeks. Pam

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