I'm just so sorry. For me, hospice was like an enormous load lifted off me, because I felt I was no longer responsible for keeping my parents going. My mother hated flying because she said she felt like she had to "keep the plane up in the air," and that's how I felt until hospice was brought in.
Once they came on board, I didn't have to keep the plane up in the air, and we were all on the same page knowing it was going to land soon.
Don't get me wrong, I was still exhausted, particularly with my dad who was dying of cancer and I was caring for him and my mother with dementia all by myself. I was a staggering, sleepless mess,tand I finally called hospice and told them "I can't do this anymore." Within two hours a nurse arrived, and someone was with my dad from then until he died the next day. I was able to take a nap and was sleeping when the nurse said he was starting to go. I was relaxed, he was relaxed, and it was peaceful for everyone.
As others have said, don't sit there just waiting. Do you best to live normally. Go to the grocery store if you need to. Take a walk. Pay the bills. Watch TV. These are all acknowledgements that no matter what happens or when, life does indeed go on.
Don't put your life on hold during this time. Keep living it, because it's important for you who will go on.
I went practically everyday to see my mom in hospice.
One day I asked her aide if mom expected us to see her daily. She said, “Your mom is always happy to see you but she hasn’t ever said that she expects you to be here day and night. She has told me that she wants her children to live their lives and see her when they can.
It’s so hard watching a parent slowly fade away. Take time for yourself when you need a physical or emotional break. I brought a book with me to read when my mom was sleeping. She didn’t expect us to continually engage in conversation.
Towards the end she was unconscious and for me this was the hardest time of all.
I am so sorry that you are struggling with this. I did as well and it is okay. We all process these things differently. My younger brother had a really hard time seeing mom in her final days. My older brother didn’t have as hard of a struggle. When my older brother pressured my younger brother to visit more, I asked him to stop because he couldn’t handle it. My older brother thought that he would regret not being there and I kept telling him that he would not regret it.
I didn’t want to be present when my mother died. I couldn’t have taken watching her take her last breath. It would have freaked me out. My older brother wanted to be there and I am glad that he was. It was important to him. I was there shortly before and I am so grateful that I didn’t see my mom die.
You have to do what you’re comfortable with. Don’t be pressured by anyone else about what to do. This is your decision. Go as often as you feel comfortable with.
Hospice was a comfort to my husband and our family. After he was admitted into hospice, his medications eased his excruciatingly unbearable pain. During the two and a half months that his care was managed by hospice, hospice through Medicare provided his incontinence products, oxygenator, high-backed wheelchair, twice a week RN visits, CNA visits, and medications. Hospice also provided spiritual and emotional support for my husband and our family. Prior to hospice, I was on edge 24/7 waiting for the next call to the ER in the hospital. Pain ruled my husband's life. It was torture. Because my husband was so miserable and there was so little we could do to help him, I developed a whole-body rash. After he was admitted to hospice, our family took advantage of my husband's time under hospice care by having conversations with him about our favorite memories together, reading out loud his favorite short stories, playing his favorite music, and reminding him of all the reasons we loved him and all the things he did to help make our lives better. We did not know whether he heard us, but we always assumed that he did. It was therapeutic for us and hopefully comforting to him. Thanks to hospice, my husband's last few months were as peaceful and painless as possible. My advice is to embrace the help and capitalize on the time left for your loved one. Hugs
End Of Life is stressful . I Placed My Brother into Hospice around Columbus Day weekend . I Went to Cape Cod and Prayed at My Moms grave yard site and asked her " To Help him Pass " Afterwards there was a Giant rainbow . I knew when I saw Him it was time for Morphine - he had spasms and giant tumors and The cancer had spread to his brain. This was discussed with the cancer doctor and Psychiatrist . I called the social worker and we called hospice and the Morphine was administered . When I saw him Saturday Morning He said " It Hurts " He was in Pain. He passed Sunday Morning on October 22, 2017 . He only complained once That Saturday Morning . I had been taking care of him the past 1 and a half years because our Mother had died and he had schizophrenia . It was important to me that he did Not suffer . His room Mate said to me " He asked for a drink of water and then passed peacefully . I wanted to let you Know . " and I said " That you " That was important that he had a peaceful Passing .
Thank you for sharing, KNance. This is what I pray for MIL when that time comes, that she passes with no pain and suffering, last breath here, and first breath in Heaven. And I am glad for you that his roommate let you know that he passed so peacefully. God bless and comfort you as you move through his absence.
Barb, Mom has been in hospice for awhile now. She is not on medication anymore- none of them. Not even her insulin. It's a blessing because it was such a struggle to get her to take them. This was a decades long problem. After several hospital stays, consults, specialists, and me begging her PCP for help here we are. I am so tired. I don't know if I have the strength left to finish the task. I have run out of gas. It is so hard to sit at her bedside.
Then please don't just "sit and wait for her to pass." Keep yourself busy, and keep your moms surroundings as joyful as possible. Death is part of life and some folks take longer in their dying process than others. Just make sure that your mom knows it's ok for her to leave this world for the next and that you're going to be ok. Sometimes that's all they need to hear so they can move on. My late husband was under hospice care for the last 22 months of his life, so yes I do understand how very stressful waiting for someone to die is, but I also know how important it is for us that aren't dying(yet)to live and enjoy our lives the very best we can despite our circumstances. Make sure that you've said all you need to say to your mom before she dies as you don't want to have any regrets, and just enjoy whatever time you may have left with her. May God bless you and keep you.
Hospice can take hours, days, weeks, months. It isn't a set timeline, and for me, I need to know what's happening today, tomorrow, etc.
With Hospice, it's a guessing game every day.
My MIL is on Hospice. 6 months now and she's 'worse' but not by a ton. We were told initially she had 3-4 weeks, at most. She's proven them wrong. Dh and his sibs are her 24/7 go-to's. Some days she's wanting FT care, somedays she fights the 'kids' over everything. It's really, really taking its toll on all of us (and I am not involved, barely on the periphery of this crazy).
I don't have any words of wisdom at all. I just feel your pain.
My sweet dad was on Hospice at his EOL. It only lasted less than a month and we were able to keep the care in home. It seemed like a long time, but was not. The situation with my MIL is something else altogether. She is refusing her walker (so we're mentally preparing for a fall) and she's barely eating--and not taking any meds but her antianxiety ones. Amazing that she is still here, and absolutely miserable.
When she finally goes, I am afraid that the only emotion we will all feel will be relief. The grieving has all already happened.
Wishing I had more patience, but I don't. I'm sick of putting her first, over and over. Being honest, I think a lot of people get to that point.
Dear Midkid58, That is where I am right now. Most of the grieving is done. I too am tired of having to put her first, over and over. I have to work so hard in the last 9 months to get my mom in hospice that I am in compassion fatigue. A few months ago I had to do a sort of "granny dump" on my mom. It was that bad. I had her transported from assisted living to the local ER. She was not well that day and the ALF was concerned about her breathing. This was after the week long hospital stay where the palliative care doctor said nothing wrong here we can't help she doesn't need anything. She is just "fine". The ER doc was very upset because "Your mom was just here". So I told her that there was hundreds of years of medical experience here and they could put their heads together and figure it out. I walked out and left her there. The nurse said "You can't leave we need your help." My response was "She is considered to be legally competent. You can handle it. She won't bite." I was shaking in my boots. A week later she landed on hospice. Her PCP (Dr. Princess) was not helpful during this time and was very upset with me. I told Dr. Princess if she was uncomfortable she could hand my parents off to someone with more experience. I could go on but I am tired of the fight...
It is stressful but, in my circumstance, hospice at least provided someone that I could speak with about what to expect. I saw my mom declining and was scrambling around frantically to help her, along with her physicians. Once I realized she had “failure to thrive” (the most generic diagnosis you will ever hear), and called hospice, I had someone that I could speak with that provided wonderful guidance. It was still very stressful but at least I had someone beside me on the last part of my mom’s life.
In my case, hospice was not accurate on the time we had. They predicted a month and she died in a few days,
But, this caregiving, end of life journey is stressful. I don’t think there is any way around that.
I started hospice care for Mom 2 months ago, not sure if she would be here in 2 weeks. She rebounded with the improved level of care, but now is going downhill slowly. I work full time and visit daily. I don't live nearby, about an hour away, but I go because this is my choice. My sibs make their choices for their reasons. In the meantime, I am still working full time and tearing apart my house to prepare to move rather far away. Mom knows this was always the plan, and has said that we should go when we are ready. We will, and so will she. Vel, you have to live your life. That is what a loving parent wants. If the parent wasn't so loving, that's even more of a reason to get on with your life. Visit when you can, talk about positive things, then go home. Ask them to call when they think it is near the end. That will give you time to get there to be with her if that is your choice. Keep an overnight bag with you in the meantime (I do) so that if it is a long wait you can be comfortable.
“you have to live your life. That is what a loving parent wants. If the parent wasn't so loving, that's even more of a reason to get on with your life.”
Vel, my mom was only on hospice for about 48 hours. And on the second afternoon, my dear, dear SIL said to me "why is this taking so long?".
I was thinking it, but she was smart and brave enough to say it out loud!
We started playing music for my mom. Opera arias, Rogers and Hammerstein, stuff from her childhood. My sister in law started up a "conversation" with my dad, who had been dead for 10 years, telling him it was time to come get mom.
Mom seemed to get more peaceful and we had an afternoon of tears and laughter in equal proportion.
Is anyone there with you?
Talk to your mom about good memories and play her some music on your phone. And don't forget to drink water!
or the wine... what ever gets you through .. the night....
AMEN
Glad to hear someone had support through the night... It's hard sometimes... and then again... that's what is supposed to be sometimes... sometimes it just needs to be a peaceful one to one.... That is okay too....
Once they came on board, I didn't have to keep the plane up in the air, and we were all on the same page knowing it was going to land soon.
Don't get me wrong, I was still exhausted, particularly with my dad who was dying of cancer and I was caring for him and my mother with dementia all by myself. I was a staggering, sleepless mess,tand I finally called hospice and told them "I can't do this anymore." Within two hours a nurse arrived, and someone was with my dad from then until he died the next day. I was able to take a nap and was sleeping when the nurse said he was starting to go. I was relaxed, he was relaxed, and it was peaceful for everyone.
As others have said, don't sit there just waiting. Do you best to live normally. Go to the grocery store if you need to. Take a walk. Pay the bills. Watch TV. These are all acknowledgements that no matter what happens or when, life does indeed go on.
Don't put your life on hold during this time. Keep living it, because it's important for you who will go on.
One day I asked her aide if mom expected us to see her daily. She said, “Your mom is always happy to see you but she hasn’t ever said that she expects you to be here day and night. She has told me that she wants her children to live their lives and see her when they can.
It’s so hard watching a parent slowly fade away. Take time for yourself when you need a physical or emotional break. I brought a book with me to read when my mom was sleeping. She didn’t expect us to continually engage in conversation.
Towards the end she was unconscious and for me this was the hardest time of all.
I am so sorry that you are struggling with this. I did as well and it is okay. We all process these things differently. My younger brother had a really hard time seeing mom in her final days. My older brother didn’t have as hard of a struggle. When my older brother pressured my younger brother to visit more, I asked him to stop because he couldn’t handle it. My older brother thought that he would regret not being there and I kept telling him that he would not regret it.
I didn’t want to be present when my mother died. I couldn’t have taken watching her take her last breath. It would have freaked me out. My older brother wanted to be there and I am glad that he was. It was important to him. I was there shortly before and I am so grateful that I didn’t see my mom die.
You have to do what you’re comfortable with. Don’t be pressured by anyone else about what to do. This is your decision. Go as often as you feel comfortable with.
Wishing you peace during this difficult time.
V.
" To Help him Pass " Afterwards there was a Giant rainbow . I knew when I saw Him it was time for Morphine - he had spasms and giant tumors and The cancer had spread to his brain. This was discussed with the cancer doctor and Psychiatrist . I called the social worker and we called hospice and the Morphine was administered . When I saw him Saturday Morning He said " It Hurts " He was in Pain. He passed Sunday Morning on October 22, 2017 . He only complained once That Saturday Morning . I had been taking care of him the past 1 and a half years because our Mother had died and he had schizophrenia . It was important to me that he did Not suffer . His room Mate said to me " He asked for a drink of water and then passed peacefully . I wanted to let you Know . " and I said " That you " That was important that he had a peaceful Passing .
Mom has been in hospice for awhile now. She is not on medication anymore-
none of them. Not even her insulin. It's a blessing because it was such a struggle
to get her to take them. This was a decades long problem. After several hospital stays, consults, specialists, and me begging her PCP for help here we are. I am so tired. I don't know if I have the strength left to finish the task. I have run out of gas.
It is so hard to sit at her bedside.
Death is part of life and some folks take longer in their dying process than others. Just make sure that your mom knows it's ok for her to leave this world for the next and that you're going to be ok. Sometimes that's all they need to hear so they can move on.
My late husband was under hospice care for the last 22 months of his life, so yes I do understand how very stressful waiting for someone to die is, but I also know how important it is for us that aren't dying(yet)to live and enjoy our lives the very best we can despite our circumstances.
Make sure that you've said all you need to say to your mom before she dies as you don't want to have any regrets, and just enjoy whatever time you may have left with her.
May God bless you and keep you.
With Hospice, it's a guessing game every day.
My MIL is on Hospice. 6 months now and she's 'worse' but not by a ton. We were told initially she had 3-4 weeks, at most. She's proven them wrong. Dh and his sibs are her 24/7 go-to's. Some days she's wanting FT care, somedays she fights the 'kids' over everything. It's really, really taking its toll on all of us (and I am not involved, barely on the periphery of this crazy).
I don't have any words of wisdom at all. I just feel your pain.
My sweet dad was on Hospice at his EOL. It only lasted less than a month and we were able to keep the care in home. It seemed like a long time, but was not. The situation with my MIL is something else altogether. She is refusing her walker (so we're mentally preparing for a fall) and she's barely eating--and not taking any meds but her antianxiety ones. Amazing that she is still here, and absolutely miserable.
When she finally goes, I am afraid that the only emotion we will all feel will be relief. The grieving has all already happened.
Wishing I had more patience, but I don't. I'm sick of putting her first, over and over. Being honest, I think a lot of people get to that point.
That is where I am right now. Most of the grieving is done. I too am tired of having to put her first, over and over.
I have to work so hard in the last 9 months to get my mom in hospice that I am in compassion fatigue. A few months ago I had to do a sort of "granny dump"
on my mom. It was that bad. I had her transported from assisted living to the local ER. She was not well that day and the ALF was concerned about her breathing. This was after the week long hospital stay
where the palliative care doctor said nothing wrong here we can't help she doesn't need anything. She is just "fine". The ER doc was very upset because "Your mom was just here". So I told her that there was hundreds of years of medical experience here and they could put their heads together and figure it out.
I walked out and left her there. The nurse said "You can't leave we need your help." My response was "She is considered to be legally competent.
You can handle it. She won't bite." I was shaking in my boots. A week later she landed on hospice. Her PCP (Dr. Princess) was not helpful during this time and was very upset with me. I told Dr. Princess if she was uncomfortable she could hand my parents off to someone with more experience. I could go on but I am tired of the fight...
In my case, hospice was not accurate on the time we had. They predicted a month and she died in a few days,
But, this caregiving, end of life journey is stressful. I don’t think there is any way around that.
My prayers are with you.
GREAT advice.
I was thinking it, but she was smart and brave enough to say it out loud!
We started playing music for my mom. Opera arias, Rogers and Hammerstein, stuff from her childhood. My sister in law started up a "conversation" with my dad, who had been dead for 10 years, telling him it was time to come get mom.
Mom seemed to get more peaceful and we had an afternoon of tears and laughter in equal proportion.
Is anyone there with you?
Talk to your mom about good memories and play her some music on your phone. And don't forget to drink water!
AMEN
Glad to hear someone had support through the night... It's hard sometimes... and then again... that's what is supposed to be sometimes... sometimes it just needs to be a peaceful one to one.... That is okay too....