It’s so hard when a loved one goes on hospice. I remember when my late father went on hospice. It was a relief to concentrate on comfort care for him (he was ready) but it’s a turning point and it’s emotional.
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.
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....
My dad went on hospice nine days ago. My family doesn’t like the nurse after an extended painful process getting a Foley catheter placed. My sister the surgeon finally got mad enough to tell him to move over and she’d do it. The hospice says they don’t have an alternative nurse to send so my other sister is looking into transferring hospices.
I don’t usually consume caffeine but had six cups of coffee trying to help last night. The whole family are sleepless wrecks from filling in.
You did the best you could for your mother at that time. Give yourself the credit you deserve and let go of all the grief expressed as "guilt". Let. It. Go. you have a life to live.
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...
I was a sleepwalker as a child but almost never as an adult — until Mom was in hospice and I sleepwalked twice that week. It was probably the most stressful experience of my life. You are doing the right thing, but the waiting is intolerable. Take care of yourself and give yourself some grace. Use this time to give her some peace, even if it's a bunch of flowers she can't really see. Hospice is a good thing, and you will realize this as time goes on. There's nothing left to do but make things as comfortable as possible.
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.
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.
Hospice is about " quality of life" for the patient in the midst of a " life limiting illness". Hospice is not about dying; while yes, patients on hospice care are generally admitted with ' a life expectancy of 6 months or less', and,some are admitted to hospice with only days or hours to live. EOL is always a stressful time for family and moreso for some than others. There should be hospice staff support for family to help prepare and cope during this fragile and holy time for the patient ( and the family). A lot of misperceptions about hospice and a patient death. It is not unusual for some family to not be able to keep vigile at the dying bedside; this does not mean that death can nor should be hastened. Please seek grief support or other counseling to further assist you towards healing. Even the most " peaceful" EOL, carries with it some trauma for loved ones. Practice good self care now.
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'm right there with you. I want to be there at the last moment, but there is only so much vigil I can handle. While I sit, I play games on my phone. For me, the hardest thing is wanting her to be out of pain, but knowing how much I will miss her.
It's stressful b/c your Mom is dying and you don't want to accept that. Your fretting and stress will not prevent her eventual death. Hospice or not, you want to provide the best and safest care you can arrange.
Yes, if it were more readily available to those who choose to have more say in their EOL. It is in Switzerland, but with the fee, travel and temporary lodging/food, it's a pricey process. (Still, it's a one-time cost and less than a 3 month stay in an ALF or NH, depending on area of residence).
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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
I have to ask... What did you expect? With or without Hospice you .. w .. a.. i.. t and then you w .. a .. i .. t some more. Hospice will provide the supplies and support you need but they are not there 24/7 in person. If yo need one you can request a Volunteer to sit with her while you go out for a bit. As she gets closer to End of Life there are Vigil Volunteers that will stay with her. (Hospice has a philosophy that no one dies alone so in a home or a facility there can/will be a trained Hospice Volunteer) If you are stressed, uneasy, unsure please talk to the Hospice Nurse, Social Worker and or Chaplain.
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.”
I don't know!! My mother is under hospice care for about 8 months and she is doing well. Hospice doesn't actually mean loss of life. It means someone stepped in and is making her life more bearable. It varies from patient to patient. I worry myself sick about her delusional state and I've just got to step back and let her live through her dreams/things that DON'T HAPPEN ( impossible)! If you know the end is near, go through the necessary information you need. Fill in the necessary paperwork needed and make sure her funeral arrangements are made and paid for. I've been stressed for a long time and I await the call. I'm happy she's happy and I don't burden myself with what will be. She's going when it's time and I will rejoice for her because she doesn't deserve the prolonging of life. You can't do anything but go with the flow. It hurts but remember, they hurt more! Peace be with you!
My mother was in hospice for 6 months and improved enough to go back to a care home. There was no way I could have stayed by her side for 6 months. I have a full-time job, kids and a house to care for. Yes, it was stressful as I was always waiting for "the call" but there was nothing else I could do but wait. My brother who lives in a different state came out once for a few days, but he had to return home as well. My Dad was in hospice for a few weeks before he passed away. Even then I couldn't just sit by his side the entire time due to other commitments so visited when I could. You never know when someone will pass, but I have found that hospice nurses are very aware when someone is close and can try to ensure you are there. I don't know your circumstances, but I agree that sometimes it is not an option to just sit and wait for someone to pass.
HI Vel, Even before reading more about your situation, I felt I was the one asking the same question. My husband and I have been caring g for his 96yr old narcissistic grandmother for 5 yrs. She lives in her own home and is able to have private care 24/7 but we manage just about everything though she 'thinks' she is in control. She has been on hospice for 3yrs and 5 mo! We have been thru so many caregivers and while she declines a little bit every month or 2 its very small. She had a heart attack last yr right before her 95th bday. Then in the last few months she has started having TIAs (ministrokes) this week she has had 3...her caregivers call and text me often about either how docile she is or how mean she is.... then I get on the phone to try to placate every one....Its exhausting!! I pray that things with your loved one are better than the misery our grandmother is in. We finally decided about a yr and a half ago that she could not control us so we have st r pped back a bit. We also cared for my husband's 94 yr old grandmother that was on hospice for 2 months and passed away peacefully this passed June....my prayers are with you and your family.
It’s a very difficult time.. these bodies can take a lot, until they just can’t.. I think this applies to the spirit as well as the body. Mom graduated out of hospice 3 times. The third time, she went to heaven. It’s ok to step away for a bit. This is why hospice can be so helpful. You need to gather strength to help your mom get through this, and of course you as well. Hospice is there to help not just the patient, but also the family…
Can you elaborate on what exactly is stressing? I mean, you KNEW the passing would be traumatic, I am assuming. But what specifically is distressing for you just now?
I'm so sorry you're going through this
Thinking of you.
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.
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....
I don’t usually consume caffeine but had six cups of coffee trying to help last night. The whole family are sleepless wrecks from filling in.
I should have moved he then... but I also had my aunt there too.... and they were together for a bit....
I finally figured out why mom was moved..... I AM AN IDIOT...
MOM could not talk... no speech to stand up for herself.....
she could not say what the f... was wrong with this situation..... TV.... 24/7.....
i am so sorry mom..... I did not do her justice at all....
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...
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 .
It is not unusual for some family to not be able to keep vigile at the dying bedside; this does not mean that death can nor should be hastened. Please seek grief support or other counseling to further assist you towards healing. Even the most " peaceful" EOL, carries with it some trauma for loved ones.
Practice good self care now.
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.
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What did you expect?
With or without Hospice you .. w .. a.. i.. t and then you w .. a .. i .. t some more.
Hospice will provide the supplies and support you need but they are not there 24/7 in person.
If yo need one you can request a Volunteer to sit with her while you go out for a bit.
As she gets closer to End of Life there are Vigil Volunteers that will stay with her. (Hospice has a philosophy that no one dies alone so in a home or a facility there can/will be a trained Hospice Volunteer)
If you are stressed, uneasy, unsure please talk to the Hospice Nurse, Social Worker and or Chaplain.
GREAT advice.
My brother who lives in a different state came out once for a few days, but he had to return home as well.
My Dad was in hospice for a few weeks before he passed away. Even then I couldn't just sit by his side the entire time due to other commitments so visited when I could.
You never know when someone will pass, but I have found that hospice nurses are very aware when someone is close and can try to ensure you are there. I don't know your circumstances, but I agree that sometimes it is not an option to just sit and wait for someone to pass.
Even before reading more about your situation, I felt I was the one asking the same question. My husband and I have been caring g for his 96yr old narcissistic grandmother for 5 yrs. She lives in her own home and is able to have private care 24/7 but we manage just about everything though she 'thinks' she is in control. She has been on hospice for 3yrs and 5 mo! We have been thru so many caregivers and while she declines a little bit every month or 2 its very small. She had a heart attack last yr right before her 95th bday. Then in the last few months she has started having TIAs (ministrokes) this week she has had 3...her caregivers call and text me often about either how docile she is or how mean she is.... then I get on the phone to try to placate every one....Its exhausting!! I pray that things with your loved one are better than the misery our grandmother is in. We finally decided about a yr and a half ago that she could not control us so we have st r pped back a bit. We also cared for my husband's 94 yr old grandmother that was on hospice for 2 months and passed away peacefully this passed June....my prayers are with you and your family.
I think this applies to the spirit as well as the body.
Mom graduated out of hospice 3 times. The third time, she went to heaven.
It’s ok to step away for a bit. This is why hospice can be so helpful. You need to gather strength to help your mom get through this, and of course you as well.
Hospice is there to help not just the patient, but also the family…
I mean, you KNEW the passing would be traumatic, I am assuming. But what specifically is distressing for you just now?