Thanks doll. I appreciate that. And it’s true, there is no straight line. This morning she woke up in a good mood, was able to walk to the bathroom with my help and spent three hours outside with her aide. She hasn’t eaten much, but at least she’s not collapsing. I spend a lot of time throwing my hands up in the air mumbling, “I don’t know, I just don’t know.” I’ve gotten a lot of support here and elsewhere from my community and that is incredible. Thank you for being part of that community.
Both my Dad and an elderly cousin who had cancer..., in the last months were lolling heads, open mouth sleeping in chairs, minimal if any appetite. The doctor for palliative-end of life care who did a home visit with the cousin, said sleeping is the body trying to divert energy to keep itself going—in his case battling cancer.
I don't really like googling things, but as one lady in the carer forum says Google-ing symptoms for end of life, and videos is informative.
At around 6 months before Dad passed (of course we didn't know it then) we were SO tired, no sleep or just a couple of hours here and there, we HAD to get overnight support in the house. We were SO lucky that there is a local charity 'Hospice at home' that has trained nurses and homecare support people. They couldn't plan or offer support 'on request' only tell us the day they had availability if they could offer us night support that night...not exactly easy to manage...BUT we got to the point where we just had to get sleep somehow.
Can the hospice people give you overnight support at home? The more support you can get at home the better but I realise that's a tall order given your last article. Safety, Sleep, minimising stress and being able to curate moments of joy were our priorities...DM me if your'd like more thoughts. xoxo
I could get overnight care, and I've looked into it from time to time, but to be honest, I'm not working, so I can sleep during the day if I need to. And I really value my alone time at night. I lived alone for 40 years and loved it. It was a big adjustment to have Mom AND and aide here all day. The idea of giving up the privacy of my nights, well, the trade off isn't worth it. Yet.🩵
I truly feel for you and your situation as this is almost word for word what I experienced with my mom in the last months of her life. We had a long talk with Hospice and how we handled my mom's eating was to ask if she wanted food, to give her what she wanted until she was done and not to force food on her. We offered her sips throughout the day. She loved her Boost (choc flavored) and this is mostly what she subsisted on. Choking and aspirating food became a definite fear as her ability to swallow became less and less. It was hard at first as this was truly letting go of any idea that she was going to "get better". My younger brother (who had no involvement in her care) asked me if I was going to just starve her. But Hospice spoke with him and got him to understand. My husband also struggled with this and he was active in her care. But he's a fixer. From the time she stopped eating any significant amount in January, she lasted until May 3. I became comfortable giving her morphine to help with the fear and agitation she experienced. She became bed bound at this point as her brain stopped talking to her body and she couldn't walk, She also developed a form of rigidity and her whole body would go stiff. Caring for her in bed took 2 people. I opted out of respite care when my husband and I left to go visit my daughter. Between the Visiting Angels caregiver, Hospice and my older brother, they provided 24 hour care. Thank goodness my mother always slept through the night. She became very sweet in these last months and loved listening to music and being read to. I found books of hers that were from her childhood and she recognized them. Once I let go of the feeding issue, life with her became much easier. It was a hard journey to get there though.
Oh wow. Thank you for sharing all of this. My mom is so far along she frequently does not hear us when we speak, or see us, or feel us touch her. Then sometimes she does. She flutters between this plane and another, has a third state - not awake, not asleep, but something else. I’ve stopped pushing the food. I give her until she turns her head or falls asleep, and insist on eyes open and some kind of interaction. That means very little nutrition. Her regular aide has admitted “stuffing” her, which I used to do as well, pushing her to finish everything. She’s going to be stopping that. You know, it’s such a hard, counter-intuitive stance to take. And we’re Jewish, where like many cultures food equals love. Withholding food is withholding love. It’s all so convoluted. Thanks again for sharing such a personal journey. 💙🩵
A few thoughts: You have so earned a respite, and it might give you the clarity you seek about next steps. It doesn't sound like she'll have much awareness , even in a new place; or her response might be to recede into sleep.
Only you can decide when it's "time" to stop feeding her, but it might help to have someone else see what her 24-hour rhythm looks like. Given her written directive, will a hospice facility feed her if she's not asking for food...? You might want to clarify with them whether they follow your wishes or the letter of the directive.
If discontinuing food, I've read that it's best--less painful, more efficient--to discontinue fluids as well. It doesn't sound like she's experiencing hunger or thirst. My stepfather was lucid when he chose to stop eating, but he kept drinking, and that apparently just prolonged the end.
I am thinking of you and sending love and patience. <3
You know what it is, she'll eat if we put the spoon to her mouth. It feels like deciding when the right time to put a cat or dog down is. When you're keeping them alive out of selfishness and when it's the kindest thing to do. If we didn't literally put food in her mouth she'd never ask. Sigh. I never wanted to be this much of a grown up. Thanks for the advice about food and fluids. I've heard that.
It's a little easier with a pet to decide whether they have "quality of life"; easier to separate yourself and your emotions from their experience. What would your mom say if 65-year-old her was observing this dilemma? It's so tough--when the directives are written, it seems like they will cover every situation, like we will intuitively know how to interpret them, but that is clearly not the case. Kindness and selfishness are also not mutually exclusive... being a super-grownup really sucks.
Good point (about 65 year old ma), I have a memory I know can’t be true, but it’s mine none the less. Her mom had breast cancer for ten years, she waited until everything was taken care of (her own father, my ggrandfather) settled in a nursing home and then she just let go. The doctors were going to revive her, and here’s the part I’m sure I made up from stories, I remember my mother throwing herself over her mother’s body and yelling at the doctors to leave her alone, don’t you dare touch her. I know Elayne (Ma) didn’t want this, we’d discussed it at length and had a plan, then the universe took her ability to follow through with plans or even remember them, away. I have a lot of thinking to do and this much I know - no matter what I do, I won’t get out of this guilt free. Not whether I should or shouldn’t feel guilty about anything but that’s just the way it works. I’m gonna feel guilty over what I did or didn’t do, no matter what i do, or don’t do.
Jodi! Yes. But would you listen to the advice if someone offered it? This has got to be the toughest thing ever. I remember how hard it was when my dad was dying, but his situation was different. I had him admitted to hospice (in home) a week before he died. At that point, we all knew it was time. And I was taught how to administer morphine to help ease his way. I had no qualms about doing it. It was time. Your writing, your introspection are extraordinary. I feel so fortunate to know you and read your beautiful work.
I do listen. I listen to everyone. And read everything. I'm as ready as I ever will be to say goodbye. What I'm faced with now is figuring out if I'm doing the right thing, or if I'm prolonging the inevitable unnecessarily. Bless you that you were able to administer the morphine. I'd have no issue with that either. We have a right to die with dignity, without needless pain and fear.💙🩵 Thanks for reading mama.
I agree about our right to die with dignity. Would it work for you to see if maybe you could send her to respite for a few days, for you? So that you could have some space to think, breathe, and feel without being on call 24/7. Give yourself a break. Maybe that will allow you to find some more clarity about all of this. My feeling is that whatever you do next, will be the next right thing.
That's what I looked into and I just couldn't get comfortable with sending mom to a nursing home, even for a few nights. She slept through a night and I caught up, so the sleep deprivation has been addressed. And I settled on an aide that is not great, but is good enough. The constant will she or won't she of her dementia journey is just exhausting. thanks for looking after me.
Hello Jodi,
Your writing is exquisite, powerful and teaches me so much about leaning in, holding humor and remembering self care alongside hard realities.
Thank you.
"It just occurred to me that she has never had a sense of direction, so I shouldn’t be surprised that her decline is anything but a straight line."
This line says so much.
I'm in awe and send big hugs and full permission to find a way to rest.
I know it is not easy. I am often on all day. I wrote last night from 11 PM to 4 AM as this is what fuels me beyond the day to day.
Thanks doll. I appreciate that. And it’s true, there is no straight line. This morning she woke up in a good mood, was able to walk to the bathroom with my help and spent three hours outside with her aide. She hasn’t eaten much, but at least she’s not collapsing. I spend a lot of time throwing my hands up in the air mumbling, “I don’t know, I just don’t know.” I’ve gotten a lot of support here and elsewhere from my community and that is incredible. Thank you for being part of that community.
Jodi, I am so glad to hear this and yes I want to support you. Sending love and rest.
Hello hon. First BIG hugs for you and your Ma.
Both my Dad and an elderly cousin who had cancer..., in the last months were lolling heads, open mouth sleeping in chairs, minimal if any appetite. The doctor for palliative-end of life care who did a home visit with the cousin, said sleeping is the body trying to divert energy to keep itself going—in his case battling cancer.
I don't really like googling things, but as one lady in the carer forum says Google-ing symptoms for end of life, and videos is informative.
At around 6 months before Dad passed (of course we didn't know it then) we were SO tired, no sleep or just a couple of hours here and there, we HAD to get overnight support in the house. We were SO lucky that there is a local charity 'Hospice at home' that has trained nurses and homecare support people. They couldn't plan or offer support 'on request' only tell us the day they had availability if they could offer us night support that night...not exactly easy to manage...BUT we got to the point where we just had to get sleep somehow.
Can the hospice people give you overnight support at home? The more support you can get at home the better but I realise that's a tall order given your last article. Safety, Sleep, minimising stress and being able to curate moments of joy were our priorities...DM me if your'd like more thoughts. xoxo
I could get overnight care, and I've looked into it from time to time, but to be honest, I'm not working, so I can sleep during the day if I need to. And I really value my alone time at night. I lived alone for 40 years and loved it. It was a big adjustment to have Mom AND and aide here all day. The idea of giving up the privacy of my nights, well, the trade off isn't worth it. Yet.🩵
Yes the privacy is to be treasured
I miss that
I wish u a healthy balance
Ahhh, yep I can see that. xoxo
I truly feel for you and your situation as this is almost word for word what I experienced with my mom in the last months of her life. We had a long talk with Hospice and how we handled my mom's eating was to ask if she wanted food, to give her what she wanted until she was done and not to force food on her. We offered her sips throughout the day. She loved her Boost (choc flavored) and this is mostly what she subsisted on. Choking and aspirating food became a definite fear as her ability to swallow became less and less. It was hard at first as this was truly letting go of any idea that she was going to "get better". My younger brother (who had no involvement in her care) asked me if I was going to just starve her. But Hospice spoke with him and got him to understand. My husband also struggled with this and he was active in her care. But he's a fixer. From the time she stopped eating any significant amount in January, she lasted until May 3. I became comfortable giving her morphine to help with the fear and agitation she experienced. She became bed bound at this point as her brain stopped talking to her body and she couldn't walk, She also developed a form of rigidity and her whole body would go stiff. Caring for her in bed took 2 people. I opted out of respite care when my husband and I left to go visit my daughter. Between the Visiting Angels caregiver, Hospice and my older brother, they provided 24 hour care. Thank goodness my mother always slept through the night. She became very sweet in these last months and loved listening to music and being read to. I found books of hers that were from her childhood and she recognized them. Once I let go of the feeding issue, life with her became much easier. It was a hard journey to get there though.
Oh wow. Thank you for sharing all of this. My mom is so far along she frequently does not hear us when we speak, or see us, or feel us touch her. Then sometimes she does. She flutters between this plane and another, has a third state - not awake, not asleep, but something else. I’ve stopped pushing the food. I give her until she turns her head or falls asleep, and insist on eyes open and some kind of interaction. That means very little nutrition. Her regular aide has admitted “stuffing” her, which I used to do as well, pushing her to finish everything. She’s going to be stopping that. You know, it’s such a hard, counter-intuitive stance to take. And we’re Jewish, where like many cultures food equals love. Withholding food is withholding love. It’s all so convoluted. Thanks again for sharing such a personal journey. 💙🩵
A few thoughts: You have so earned a respite, and it might give you the clarity you seek about next steps. It doesn't sound like she'll have much awareness , even in a new place; or her response might be to recede into sleep.
Only you can decide when it's "time" to stop feeding her, but it might help to have someone else see what her 24-hour rhythm looks like. Given her written directive, will a hospice facility feed her if she's not asking for food...? You might want to clarify with them whether they follow your wishes or the letter of the directive.
If discontinuing food, I've read that it's best--less painful, more efficient--to discontinue fluids as well. It doesn't sound like she's experiencing hunger or thirst. My stepfather was lucid when he chose to stop eating, but he kept drinking, and that apparently just prolonged the end.
I am thinking of you and sending love and patience. <3
You know what it is, she'll eat if we put the spoon to her mouth. It feels like deciding when the right time to put a cat or dog down is. When you're keeping them alive out of selfishness and when it's the kindest thing to do. If we didn't literally put food in her mouth she'd never ask. Sigh. I never wanted to be this much of a grown up. Thanks for the advice about food and fluids. I've heard that.
It's a little easier with a pet to decide whether they have "quality of life"; easier to separate yourself and your emotions from their experience. What would your mom say if 65-year-old her was observing this dilemma? It's so tough--when the directives are written, it seems like they will cover every situation, like we will intuitively know how to interpret them, but that is clearly not the case. Kindness and selfishness are also not mutually exclusive... being a super-grownup really sucks.
Good point (about 65 year old ma), I have a memory I know can’t be true, but it’s mine none the less. Her mom had breast cancer for ten years, she waited until everything was taken care of (her own father, my ggrandfather) settled in a nursing home and then she just let go. The doctors were going to revive her, and here’s the part I’m sure I made up from stories, I remember my mother throwing herself over her mother’s body and yelling at the doctors to leave her alone, don’t you dare touch her. I know Elayne (Ma) didn’t want this, we’d discussed it at length and had a plan, then the universe took her ability to follow through with plans or even remember them, away. I have a lot of thinking to do and this much I know - no matter what I do, I won’t get out of this guilt free. Not whether I should or shouldn’t feel guilty about anything but that’s just the way it works. I’m gonna feel guilty over what I did or didn’t do, no matter what i do, or don’t do.
I'm so sorry. I understand how that's inescapable, in spite of all you've done.
Jodi! Yes. But would you listen to the advice if someone offered it? This has got to be the toughest thing ever. I remember how hard it was when my dad was dying, but his situation was different. I had him admitted to hospice (in home) a week before he died. At that point, we all knew it was time. And I was taught how to administer morphine to help ease his way. I had no qualms about doing it. It was time. Your writing, your introspection are extraordinary. I feel so fortunate to know you and read your beautiful work.
I do listen. I listen to everyone. And read everything. I'm as ready as I ever will be to say goodbye. What I'm faced with now is figuring out if I'm doing the right thing, or if I'm prolonging the inevitable unnecessarily. Bless you that you were able to administer the morphine. I'd have no issue with that either. We have a right to die with dignity, without needless pain and fear.💙🩵 Thanks for reading mama.
I agree about our right to die with dignity. Would it work for you to see if maybe you could send her to respite for a few days, for you? So that you could have some space to think, breathe, and feel without being on call 24/7. Give yourself a break. Maybe that will allow you to find some more clarity about all of this. My feeling is that whatever you do next, will be the next right thing.
I appreciate this conversation very much
The deep listening
Thank you
That's what I looked into and I just couldn't get comfortable with sending mom to a nursing home, even for a few nights. She slept through a night and I caught up, so the sleep deprivation has been addressed. And I settled on an aide that is not great, but is good enough. The constant will she or won't she of her dementia journey is just exhausting. thanks for looking after me.
Sure. And if you change your mind or figure out a way to get a little break, you're always welcome at Casita Nan.