I am currently caring for my 67 year old mother who is in the final stages of her fight with multiple myeloma. I thought it could be of some benefit to periodically post on her condition to help those also facing this awful disease.
Mom was diagnosed on 2010 and went through a series of treatments, including clinical trials at UCSF and Mayo Clinic. She did not have a stem cell transplant. This June 2014 it was decided that treatment was no longer effective and Mom was given no more than 6 months to live. In September we moved her in with us and I have been her primary caregiver, along with hospice. It has been a stressful, sad, and challenging situation for the family (we have two young children), but it has been healing to talk with her and spend her final days together.
20 days ago Mom stopped eating and takes very few fluids. She was declining rapidly and hospice told us that it was highly unlikely she would make it to Thanksgiving. In fact, during Thanksgiving day, we wondered hour by hour if she would make it. Then, two days later, she has suddenly started talking a bit more, is restless, won't sleep, and in the last day or so has drank more than she has in 3 weeks.
Tonight she told me she doesn't want to sleep due to nightmares and not to turn off the TV, even if she falls asleep. We are all baffled, including hospice, as to how she went from the brink of death to watching TV all day. Is this normal? Now we wonder if she will make it to Christmas, though that would be 41 days of no food (assuming she doesn't eat again).
The sad part of this is that she wants to die. She told her nurse yesterday that she is depressed each morning when she wakes up realizing that she is still alive. Even with promethazine [Phenergan] she is depressed a lot now.
So no food for 20 days, minimal fluids, nausea, restlessness, completely bedridden (she wears depends) and depressed. How long can she go on? I just hope when it is her time it is calm and peaceful.
I will update again as the situation professes, but would love feedback from those who have been through this. Thank you for listening.
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Re: End of life - mom's story
Hi Worried In Oregon,
I think I may have posted to you before, but I did go through a similar situation as a caregiver to my mother-in-law 25 years ago. She had stomach cancer, and it became a palliative situation, and she eventually passed away from that. She lived with us in our home for the last year of her life, and we also had young children.
My husband and I had lots of family and community support, but it was still a very difficult time. She was too ill to really do too much, and because of the cancer, couldn't eat much either. She was very brave and masked her pain, she rarely complained.
I used to try to get her to drink Ensure, or milkshakes, anything with calories and a bit of protein. She loved our family dog, and the two spent a lot of time together when the rest of us were busy.
I know though that this was the best situation for her to be in, and apparently most patients would like to be at home in this sad situation.
Hope that helps!
I think I may have posted to you before, but I did go through a similar situation as a caregiver to my mother-in-law 25 years ago. She had stomach cancer, and it became a palliative situation, and she eventually passed away from that. She lived with us in our home for the last year of her life, and we also had young children.
My husband and I had lots of family and community support, but it was still a very difficult time. She was too ill to really do too much, and because of the cancer, couldn't eat much either. She was very brave and masked her pain, she rarely complained.
I used to try to get her to drink Ensure, or milkshakes, anything with calories and a bit of protein. She loved our family dog, and the two spent a lot of time together when the rest of us were busy.
I know though that this was the best situation for her to be in, and apparently most patients would like to be at home in this sad situation.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: End of life - mom's story
So sorry to hear about your mother.
It is really hard and stressful being a caregiver. Sounds like you have your hands full. I hope you are resting, and taking in healthy foods during this difficult time. At least 30 minutes to an hour per day exercising, reading, or doing something you enjoy away from the situation is helpful also.
It was a mentally and physically exhausting time for me being a primary care giver for several years. My father's code status was changed from Do Not Resuscitate to Comfort Measures Only during his last days dealing with pneumonia and multiple myeloma in 2011. He was given small does of morphine and Ativan (lorazepma) when it appeared that he was in pain and agitated or anxious. Zofran (ondansetron) caused less side effects than Phenergan for him.
Blood pressure, pulse, respiratory rate and pulse oximetry readings all started dropping his last 24 hours. It was a mostly peaceful time for us, considering the circumstances, and he seemed to be calmer the last 48 hours.
Keep us updated if you can.
Best Wishes, Margo
It is really hard and stressful being a caregiver. Sounds like you have your hands full. I hope you are resting, and taking in healthy foods during this difficult time. At least 30 minutes to an hour per day exercising, reading, or doing something you enjoy away from the situation is helpful also.
It was a mentally and physically exhausting time for me being a primary care giver for several years. My father's code status was changed from Do Not Resuscitate to Comfort Measures Only during his last days dealing with pneumonia and multiple myeloma in 2011. He was given small does of morphine and Ativan (lorazepma) when it appeared that he was in pain and agitated or anxious. Zofran (ondansetron) caused less side effects than Phenergan for him.
Blood pressure, pulse, respiratory rate and pulse oximetry readings all started dropping his last 24 hours. It was a mostly peaceful time for us, considering the circumstances, and he seemed to be calmer the last 48 hours.
Keep us updated if you can.
Best Wishes, Margo
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3334 - Name: Margo
- Who do you know with myeloma?: myself, father
- When were you/they diagnosed?: Myself - Feb 2013, Father - Sept 2003
Re: End of life - mom's story
Thank you both for the kind responses. It has been a strange few days with Mom so I thought it was time for a quick update.
As I mentioned Mom has been very restless, not sleeping and having a moments of real thirst, thought she doesn't drink much. Yesterday she was talking about hanging on until Christmas and what options she has when my family leaves for an international holiday in February. She wanted to eat yesterday as well but since she cannot swallow well I gave her a Popsicle which she enjoyed.
Last evening she finally went to sleep and she has been sleeping ever since. She doesn't wake when I giver her the oral morphine either. It is a deep sleep with very shallow breathing and some apnea. She hasn't had any liquids since yesterday afternoon. So now I believe we are in another downward spiral. She is mentally ready for the end and I think the family is too, but it is still very hard to watch. I am hoping she keeps sleeping and can drift away now.
As I mentioned Mom has been very restless, not sleeping and having a moments of real thirst, thought she doesn't drink much. Yesterday she was talking about hanging on until Christmas and what options she has when my family leaves for an international holiday in February. She wanted to eat yesterday as well but since she cannot swallow well I gave her a Popsicle which she enjoyed.
Last evening she finally went to sleep and she has been sleeping ever since. She doesn't wake when I giver her the oral morphine either. It is a deep sleep with very shallow breathing and some apnea. She hasn't had any liquids since yesterday afternoon. So now I believe we are in another downward spiral. She is mentally ready for the end and I think the family is too, but it is still very hard to watch. I am hoping she keeps sleeping and can drift away now.
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Worriedinoregon
Re: End of life - mom's story
Worried in Oregon-
Your mother has been so fortunate to be able to spend her last days with you, your family and the dog. During the last couple of days of my husband's life as he was dying from lung cancer he began to "sleep" almost non-stop. He had moments when he was conscious and lucid, but they became infrequent. He also had stopped eating and drinking. When I would try to give him a sip of water he would clamp his teeth tight so I couldn't give him anything. It was obvious that he was in pain, but I couldn't get the morphine into him because of the clamping of his jaw. The hospice nurse told me to tell him that it was 12 year old Scotch. When I did that his mouth flew open and I was able to give him the morphine.
His breathing also became very slow and shallow with periods of no breathing. When that started he passed very quietly that night.
I pray that your mother goes very quietly and peacefully. Know that you have provided your mother with the very best that you could give her. Much love to all of you as you experience your mother's final transition.
Nancy in Phila
Your mother has been so fortunate to be able to spend her last days with you, your family and the dog. During the last couple of days of my husband's life as he was dying from lung cancer he began to "sleep" almost non-stop. He had moments when he was conscious and lucid, but they became infrequent. He also had stopped eating and drinking. When I would try to give him a sip of water he would clamp his teeth tight so I couldn't give him anything. It was obvious that he was in pain, but I couldn't get the morphine into him because of the clamping of his jaw. The hospice nurse told me to tell him that it was 12 year old Scotch. When I did that his mouth flew open and I was able to give him the morphine.
His breathing also became very slow and shallow with periods of no breathing. When that started he passed very quietly that night.
I pray that your mother goes very quietly and peacefully. Know that you have provided your mother with the very best that you could give her. Much love to all of you as you experience your mother's final transition.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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