Medical Forum / Diseases and Disorders / Alzheimer's / March 2004
At home with Hospice
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Video Event - 27 Feb 2004 02:16 GMT Hello, I just wanted to let you all know that my mom is getting the best care from my family & hospice. Hospice also provided her with a hospital bed, wheelchair, pads, diapers, boost. My mom lost her strength to walk, after all the tests in the hospital. She was walking on her own, slowly, before I brought her in. And she walked around the nurses station, everyday, up until the stress test. Now she's too weak to stand on her feet. She still insists on getting up, which "we dance", I call it, holding her close & carrying her from the bed to her wheelchair or recliner. She told me that she's dying. She asked me if I could show her the way. I told her, "yes, I'll be right beside you all the way and then Jesus will show you the rest of the way". I said, that "I understand HE's waiting for you, when you are ready to go to him. I will be okay. I'm strong and I'll look after Arthur, (her husband of 20 years), when you are ready". I feel so blessed to have this time with her. There are so many beautiful moments that we're sharing together, that will last me my lifetime. I'll share again with you, soon. Sonja
turkey in the straw - 27 Feb 2004 04:15 GMT Sonja, Your post brought tears to my eyes.What a awesome person you must be.Barb
Gwen Love - 27 Feb 2004 04:59 GMT Sonja, I'm so glad you and your mom are sharing beautiful moments together. Gwen
 Signature =========================================================================== ==== Laughing at our mistakes can lengthen our own life. Laughing at someone else's can shorten it. - Cullen Hightower =========================================================================== =====
| Hello, | I just wanted to let you all know that my mom is getting the best care [quoted text clipped - 15 lines] | I'll share again with you, soon. | Sonja Dennis P. Harris - 27 Feb 2004 06:32 GMT > She told me that she's dying. > She asked me if I could show her the way. it certainly sounds like hospice was the correct choice, then.
i'll keep all of you in my prayers...
dancertm - 27 Feb 2004 15:22 GMT >> She told me that she's dying. >> She asked me if I could show her the way. > >it certainly sounds like hospice was the correct choice, then. > >i'll keep all of you in my prayers... One of the greatest gifts one can offer another human being, especially a parent, is to be with them for the sacred, noble act of dying. The biggest fear people have is dying alone, and actually there is a religious ministry of very nice folks who dedicate a portion of their lives doing this for others (you can google Sacred Dying Ministry). The women who founded it visited my church one day and they started a chapter.
I've already done t his act with my mom, and now I'm taking care of dad. My mom was not AD, but lung cancer, but she was in home hospice. You are doing the right thing, and it sounds as though the way you're doing it is healthy, and coming from the best side possible. When she does die, it will be natural, and you will know you helped her with dignity, you will not feel guilt, and the grace you receive will eventually outweigh the momentary sadness.
Hugs.
Video Event - 29 Feb 2004 04:09 GMT Thank you all. We went to the sacred dying ministry foundation website and it was very helpful. We have a new subject and would appreciate your input. My sister wants to bring over the grandkids, (9 & 6 yrs old) to see mom. Mom is just out of it. She feels uneasy with too much activity or too many people around. We've talked about bringing one child into the room at a time. The 6 yr old granddaughter wants to read grandma a book. The 9 yr old grandson wants to see her before she dies. We were wondering if it would be better for them to remember her as she was, not as she is now? How do you prepare the kids to say goodbye? Sonja & Family
Dennis P. Harris - 29 Feb 2004 05:43 GMT > My sister wants to bring over the grandkids, (9 & 6 yrs > old) to see mom. Mom is just out of it. She feels uneasy with too much [quoted text clipped - 3 lines] > We were wondering if it would be better for them to remember her as she > was, not as she is now? How do you prepare the kids to say goodbye? sometimes children are wiser than adults! i think they should be given the opportunity, but you need to prepare them for the fact that grandma might not understand the book or know who they are, but that if she was healthy she'd be very grateful for their visit. i would try to keep the time relatively short.
children need to learn not only that death is natural, but how to deal with the grief, how to offer sympathy to others, and how to participate in the social rituals that pay tribute to the dying person and the things they did in their life. hospice really tries to help families work through all of this, and helps the patient die with dignity in a loving atmosphere.
i think it's a shame this society tries to keep children from learning about death, which is a natural part of life and living. i'm glad that my family never tried to be protective in that way.
we also learned about caring for ill and elderly relatives and about how to respond when a neighbor or friend dies (in a small town, the first thing you do is take them food, offer your condolences, and ask what else you can help with).
Adelle D. Stavis, Esq. - 01 Mar 2004 03:30 GMT I want to echo what everyone has said.
We have included my two children ever since my grandmother died when my (older child) Rebecca was five. She insisted on being brought back into the room to say goodbye, saying it felt important. None of us had words to fully explain why. But she felt it was the place she should be and the thing she should do. When a child feels that empathetic and strong, I think it would be a mistake to undermine it by saying no.
By including your children, you teach them not only about the full cycle of life. You teach them about their own resilience. You teach them about the solidarity and support of family and love. And you teach them about honor and respect, for the dying, for the survivors, and for themselves.
 Signature Adelle D. Stavis, Esq. Remove the c in my name for me to see your reply
> > > My sister wants to bring over the grandkids, (9 & 6 yrs [quoted text clipped - 26 lines] > town, the first thing you do is take them food, offer your > condolences, and ask what else you can help with). Video Event - 02 Mar 2004 18:29 GMT Thank you all for your input and support. You were all so right. The children came to see Grandma and brought the pictures they drew to express their love. They were both quiet and respectful. Her granddaughter read her green eggs and ham. All the pieces just seem to be naturally fitting together. I would like to share a letter I wrote to my dear friends here with all of you dear friends, too. Saved e-mail message From: VideoEvent@webtv.net (Video Event) Date: Sun, Feb 29, 2004, 1:07pm To: videoevent@webtv.net Subject: My mom My dear friends, My mom is very frightened to be left alone. And while she's sleeping, I don't want to wake her, by talking on the phone. It's just much easier for me to communicate with you by forwarding my letters. After my mom was transported home from the hospital, she was so weak, I didn't know if she could make it more than 2 weeks. Her speech was barely a whisper and her words mostly didn't make much sense. When she asked to be moved, I picked her up, but her feet would just drag underneath her. Slowly, she began to regain her strength. She began drinking water, boost & yogurt smoothies. She was able to swallow her pills. She began eating apple sauce, pudding, bananas, cottage cheese. She kept progressing. She was able to communicate her words & thoughts clearly. We began to have hope that she was getting better. She began to eat ravenously, (for her appetite) two mornings in a row, and a dinner. Solid foods; bits of chicken, pasta, quesadilla. She had no problem swallowing anymore. She would say hurry, hurry; wanting me to just shovel the food into her. "More. Hurry. Hurry". Two mornings in a row. She has never shoveled food, even before her alzheimers. She has always chewed each tiny bite forever. As she became physically stronger, her emotional anxiety returned. And it was 7:30pm, when the phone rang and it was the Reverend from hospice wanting to come visit her. I told him that she's really afraid right now with her alzheimers and asked if we could reschedule for Tuesday. As I got off the phone, mom asked who it was. She told me to have him come now. During the time, we were waiting for him to arrive, she asked me to have him bless our family, our home, and to bless her. She kept repeating "Lord, Jesus", over and over again. This went on for several minutes. Then she opened her eyes and said, "where is he?" I said, "He's here with you, now, surrounding you and I with His Love as He always has." She probably meant the Rev. And the doorbell rang. I said, "That's the Reverend., arriving now. He's a man of God". I opened the front door and Reverend Doug walked in. And right behind him, a wild bird followed him into the house. It was a beautiful bird. It flew past Rev. Doug into the den and turned down the hall, towards moms room, and hit into the cabinets. I ran towards mom's room, closed her door, and ducked, as this bird kept swooping by me, trying to fly, but kept running into her bedroom door. It finally tired, flying through the house and happened to fall into my kitchen sink, where Rev. Doug swooped it up into a cloth and released it. He was in awe of how beautiful this bird was. I was in awe, too. He sat down on the bed with my mom and held her hands. I can't even remember the most beautiful prayer he gave her and our family. I'll ask him for it Tuesday. The only marks I could find in the house, left by the bird, were on her bedroom door. I told mom that God sent this bird to her as His messenger of peace in answer of her prayers. The next morning, I woke up to my mom standing on her own two feet, bedside the bed! She had enough strength to lift herself up, slide off my high bed onto her own two feet and wasn't even leaning on the bed to support herself! It was her talking that waked me. When we made our usual rounds to her lazyboy, wheelchair, everywhere, that day, I could feel her carrying herself, walking. She was so much stronger. And she kept telling me she wanted to move. She said she wanted to dance with me. I thought she meant she just wanted to move from the bed to the lazyboy, because when I pick her up I say "we're dancing". She said, "no, I don't want to go to the chair, I want to dance with you". So I turned on the sinatra, and WE DANCED!!! In hindsight, I wish I hadn't persuaded her not to overdo it, that day. I didn't realize, then, this gift. The nurse came, because she's been experiencing nausea & abdominal pain, off and on. She wouldn't take any foods or liquids and gagged just trying to drink water. Our worst fear for her is a blockage from the tumor. After examining her, the nurse reassured us that she's not experiencing abdominal pain. Her nausea is caused by her extreme anxiety. Her dymentia is causing even more fear & anxiety. She prescribed her ativan, which is really helping her anxiety, now. She said my mom knows a lot more than we do about what's going on right now. My mom has been telling us about these people all around her, since the end of the year. The faces she see's. She, literally, points them out. She's not afraid of them anymore. She says she doesn't know them. They are asking her to come with them. Arthur thinks they're angels. I do too, and I think those angels are her mother, son, aunt, and all her loved ones waiting for her. I think she just doesn't recognize them, YET. love, Sonja
Mare - 10 Mar 2004 16:24 GMT Hi Sonja, What a beautiful letter. My Mom also sees people and has sort of conversations with them. It's scary and comforting at the same time. Mare
Thank you all for your input and support. You were all so right. The children came to see Grandma and brought the pictures they drew to express their love. They were both quiet and respectful. Her granddaughter read her green eggs and ham. All the pieces just seem to be naturally fitting together. I would like to share a letter I wrote to my dear friends here with all of you dear friends, too.
Saved e-mail message
From: VideoEvent@webtv.net (Video Event) Date: Sun, Feb 29, 2004, 1:07pm To: videoevent@webtv.net Subject: My mom My dear friends, My mom is very frightened to be left alone. And while she's sleeping, I don't want to wake her, by talking on the phone. It's just much easier for me to communicate with you by forwarding my letters. After my mom was transported home from the hospital, she was so weak, I didn't know if she could make it more than 2 weeks. Her speech was barely a whisper and her words mostly didn't make much sense. When she asked to be moved, I picked her up, but her feet would just drag underneath her. Slowly, she began to regain her strength. She began drinking water, boost & yogurt smoothies. She was able to swallow her pills. She began eating apple sauce, pudding, bananas, cottage cheese. She kept progressing. She was able to communicate her words & thoughts clearly. We began to have hope that she was getting better. She began to eat ravenously, (for her appetite) two mornings in a row, and a dinner. Solid foods; bits of chicken, pasta, quesadilla. She had no problem swallowing anymore. She would say hurry, hurry; wanting me to just shovel the food into her. "More. Hurry. Hurry". Two mornings in a row. She has never shoveled food, even before her alzheimers. She has always chewed each tiny bite forever. As she became physically stronger, her emotional anxiety returned. And it was 7:30pm, when the phone rang and it was the Reverend from hospice wanting to come visit her. I told him that she's really afraid right now with her alzheimers and asked if we could reschedule for Tuesday. As I got off the phone, mom asked who it was. She told me to have him come now. During the time, we were waiting for him to arrive, she asked me to have him bless our family, our home, and to bless her. She kept repeating "Lord, Jesus", over and over again. This went on for several minutes. Then she opened her eyes and said, "where is he?" I said, "He's here with you, now, surrounding you and I with His Love as He always has." She probably meant the Rev. And the doorbell rang. I said, "That's the Reverend., arriving now. He's a man of God". I opened the front door and Reverend Doug walked in. And right behind him, a wild bird followed him into the house. It was a beautiful bird. It flew past Rev. Doug into the den and turned down the hall, towards moms room, and hit into the cabinets. I ran towards mom's room, closed her door, and ducked, as this bird kept swooping by me, trying to fly, but kept running into her bedroom door. It finally tired, flying through the house and happened to fall into my kitchen sink, where Rev. Doug swooped it up into a cloth and released it. He was in awe of how beautiful this bird was. I was in awe, too. He sat down on the bed with my mom and held her hands. I can't even remember the most beautiful prayer he gave her and our family. I'll ask him for it Tuesday. The only marks I could find in the house, left by the bird, were on her bedroom door. I told mom that God sent this bird to her as His messenger of peace in answer of her prayers. The next morning, I woke up to my mom standing on her own two feet, bedside the bed! She had enough strength to lift herself up, slide off my high bed onto her own two feet and wasn't even leaning on the bed to support herself! It was her talking that waked me. When we made our usual rounds to her lazyboy, wheelchair, everywhere, that day, I could feel her carrying herself, walking. She was so much stronger. And she kept telling me she wanted to move. She said she wanted to dance with me. I thought she meant she just wanted to move from the bed to the lazyboy, because when I pick her up I say "we're dancing". She said, "no, I don't want to go to the chair, I want to dance with you". So I turned on the sinatra, and WE DANCED!!! In hindsight, I wish I hadn't persuaded her not to overdo it, that day. I didn't realize, then, this gift. The nurse came, because she's been experiencing nausea & abdominal pain, off and on. She wouldn't take any foods or liquids and gagged just trying to drink water. Our worst fear for her is a blockage from the tumor. After examining her, the nurse reassured us that she's not experiencing abdominal pain. Her nausea is caused by her extreme anxiety. Her dymentia is causing even more fear & anxiety. She prescribed her ativan, which is really helping her anxiety, now. She said my mom knows a lot more than we do about what's going on right now. My mom has been telling us about these people all around her, since the end of the year. The faces she see's. She, literally, points them out. She's not afraid of them anymore. She says she doesn't know them. They are asking her to come with them. Arthur thinks they're angels. I do too, and I think those angels are her mother, son, aunt, and all her loved ones waiting for her. I think she just doesn't recognize them, YET. love, Sonja
turkey in the straw - 01 Mar 2004 05:04 GMT Whats new with my mom is albuterol,oxegyn,antibiotics.
dancertm - 29 Feb 2004 14:59 GMT >Thank you all. We went to the sacred dying ministry foundation website >and it was very helpful. We have a new subject and would appreciate [quoted text clipped - 6 lines] >was, not as she is now? How do you prepare the kids to say goodbye? >Sonja & Family I'd say let them see her. Let the little one read (who knows how much a person can hear yet not respond). Let them talk to her but ask they keep their voices low. Bring them in one by one if you're worried about too much activity. Children will follow your lead.
The day my mom passed, in home hospice, the hospice nurse came by as part of her regular visit to change the bedding, and do some things. It was a day my niece, age 10 was normally at my parents home after school. My niece, with the help of the hospice nurse bathed my mother, and changed her sheets, and her diaper. Mom was comatose at this time.
It was later that evening around 10:30pm she died. So, the last act her grand daughter performed was one of charity and caring for the sick. There was no need to explain anything to her, she saw the near death person laying in the bed helpless.
It's been 4 years now since, and she's not had any ill effects. She's now a normal obnoxious 14 year old!
Be strong and compassionate, morn letter, and well...and then move to the happy thoughts, the shared times, and past loved one live forever.
hugs..
anthony.
Evelyn Ruut - 29 Feb 2004 16:11 GMT > Thank you all. We went to the sacred dying ministry foundation website > and it was very helpful. We have a new subject and would appreciate [quoted text clipped - 6 lines] > was, not as she is now? How do you prepare the kids to say goodbye? > Sonja & Family Sonja, everthing that is born, also dies.
You have received good advice.
Don't baby the kids too much or they will never grow up. They are wiser than we think they are and stronger and more capable of understanding than we think they are.
Let them understand in advance that it is normal when our bodies grow old and break down that death is natural and a release after a long and productive life. Whatever religious belief your family adheres to should be reinforced, especially that dying is natural and that ultimately it is time to go home.
Especially make them understand that she may not be conscious or remember them, but that it isn't personal.
Death is a process not an event.
Allowing them to be part of it will help them to sort out her departure.
 Signature Evelyn
(To reply to me personally, remove sox)
Songbird - 01 Mar 2004 01:42 GMT > Thank you all. We went to the sacred dying ministry foundation website > and it was very helpful. We have a new subject and would appreciate [quoted text clipped - 6 lines] > was, not as she is now? How do you prepare the kids to say goodbye? > Sonja & Family Both my grandmothers died before I was born, and my grandfathers and one pair of great-grandparents lived until I was in my 20s.
However, I was close to another set of great-grandparents who died when I was 6 and 9. In both cases, the illnesses were brief - less than a week, and I was told very little. I was not taken to the funeral or funeral home nor was there any other way for me to say "goodbye." It was as if my parents thought I was too young to understand the concept at all or to love in a meaningful way. I remember being very bewildered by it all, and especially upset that I could not see Mamie, who died when I was 9 and was the only grandmotherly figure I had in my life. She had a brain hemorrhage and lived a few days in ICU. My parents told me the hospital wouldn't allow it, but then they didn't take me to the funeral either, so I think they had an issue as well.
As a result, death became even more foreign and scary to me. In high school, I lost several friends to accidents, and I always refused to attend the funerals or visitations and hated myself for doing so. Finally, as a senior in high school, I told my parents I should go to a funeral before I *had* to go to a funeral. My dad is a minister, and the next time someone in the church died (an older man I did not know), he got me out of school to be the acolyte. It was very hard for me emotionally, but it helped that I had a "job" to do. Little did I know that 10 days later I would be sitting with the family at the funeral of the father of my boyfriend and his sister, my best friend.
In short -- let the kids set the pace. Explain what they will see and how Mom may respond (or not respond). I think one at a time makes good sense, and if possible, your sister should have some uninterrupted time with each one immediately afterwards to address any questions or concerns the kids may have. It's good for them to be able to see death as a necessary stage of life, and to be given the opportunity to say goodbye and to express their love. Plus, it tells them they are full-fledged members of the family who also play a role in loving and supporting each other, and I think that is important for kids to know. It's impossible to know how much your mom will recognize or take in, but I think love is always perceived at some level.
Your mom is obviously well-loved and fortunate to have a family that is thinking so deeply about how to care best for her.
Songbird
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