worried sick mother
Active Member
Sam, how heartbreaking, I'm so very sorry. I know you made the right decision and just wanted to offer my support. I'm glad you found this site. Just prayed for you and your family. Keep posting
24yr old daughter on hospice homeless
- Thread starter sam ilpa
- Start date
Sister's Keeper
Active Member
You may also want to check with other hospice care providers in your area. Some do have and offer services in inpatient units.
I am so very sorry that you have to cope with this situation. Have you been able to speak to her doctors to hear her actual prognosis and the timeline the doctors are projecting? If she has weeks it would be different than if she has months or years left.
Your other children MUST be considered in every decision. If having your daughter in your home under hospice is not healthy for the young ones, then you must prioritize the young ones, period. If other relatives have other opinions, that is none of your business. They can split up to deal with her if they choose to, but that must be their choice and not yours. It is their life and their choice. Sadly, after a week or two with your daughter, they will probably regret the decision if your daughter is as disorganized and mentally ill as she seems. Please do not let your relatives/friends use their choices to make you feel bad.
I strongly suggest finding a hospice with inpatient services. it is likely that insurance or medicaid will pay for this, and it would be healthier for all considered if she would agree to this. She may want to use the hospice medications/services along with party drugs, even knowing how dangerous this is Of course you cannot change this, but it would be better for her to do this out of your home.
If her prognosis is longer than weeks, you might want to consider applying for guardianship of her, her mental status may make it something that is possible, and that could help you in getting her into an inpatient hospice or hospital program. She sounds like she needs intensive help to make her remaining time into something positive. Of course this may be a responsibility that you are not able to handle, and that is absolutely okay.
Your other children MUST be considered in every decision. If having your daughter in your home under hospice is not healthy for the young ones, then you must prioritize the young ones, period. If other relatives have other opinions, that is none of your business. They can split up to deal with her if they choose to, but that must be their choice and not yours. It is their life and their choice. Sadly, after a week or two with your daughter, they will probably regret the decision if your daughter is as disorganized and mentally ill as she seems. Please do not let your relatives/friends use their choices to make you feel bad.
I strongly suggest finding a hospice with inpatient services. it is likely that insurance or medicaid will pay for this, and it would be healthier for all considered if she would agree to this. She may want to use the hospice medications/services along with party drugs, even knowing how dangerous this is Of course you cannot change this, but it would be better for her to do this out of your home.
If her prognosis is longer than weeks, you might want to consider applying for guardianship of her, her mental status may make it something that is possible, and that could help you in getting her into an inpatient hospice or hospital program. She sounds like she needs intensive help to make her remaining time into something positive. Of course this may be a responsibility that you are not able to handle, and that is absolutely okay.
Thank you for your words and points to consider, Susiestar. I haven't talked to the doctor (who had treated her for the past 3yrs until just recently) who certified her terminally ill. I learned of the prognosis from the Hospice representative who obtained the certification. In the past, her incurable illnesses have been considered life threatening and debilitating but never terminal until last week. Hospice informed me of a 6 month timeline.
Today I do feel strongly about the decisions I've made to have the younger childrens health & safety as a priority & to not think about the choices/ opinions of the family member wanting to house her. I pray that I continue with that focus. This forum has strengthened me and I reread the community's posts to remind me of my responsibilities and what I have no power over.
She has private health insurance coverage and SSI Medicaid. Hospice was planning to help her apply for Medicare. The big question right now is what she is willing to do with her options. I've asked her via text, but she's not responding to my offers of help. In the meantime, I will find out about our options for inpatient services. She's not opioid naive, has gone months on high doses of fentanyl patches, oxymorphone, alcohol & marijuana. So yes, your comment about mixing the hospice medications with- other drugs crossed my mind. But I know I have no control over her misuse. As far as guardianship, I've thought of it once and will need to learn more about it. I can't think about her being out there right now because I will probably crumble. Very grateful for this redirection.
Today I do feel strongly about the decisions I've made to have the younger childrens health & safety as a priority & to not think about the choices/ opinions of the family member wanting to house her. I pray that I continue with that focus. This forum has strengthened me and I reread the community's posts to remind me of my responsibilities and what I have no power over.
She has private health insurance coverage and SSI Medicaid. Hospice was planning to help her apply for Medicare. The big question right now is what she is willing to do with her options. I've asked her via text, but she's not responding to my offers of help. In the meantime, I will find out about our options for inpatient services. She's not opioid naive, has gone months on high doses of fentanyl patches, oxymorphone, alcohol & marijuana. So yes, your comment about mixing the hospice medications with- other drugs crossed my mind. But I know I have no control over her misuse. As far as guardianship, I've thought of it once and will need to learn more about it. I can't think about her being out there right now because I will probably crumble. Very grateful for this redirection.
So my daughter had the hospice social worker (sw) call me to say she's not feeling well and doesn't have a safe place to be on the hospice pain medications. She wants to come home. I let the sw know that I couldn't allow her back in the house with-my minor kids. She said the only in-patient hospice in our area is a 2 week stay facility and not appropriate for her. The sw said that if we couldn't house her then she would find a place for her. She also mentioned a lock box for the medications which doesn't prevent my daughter from having someone drop off drugs to her. The sw also asked if I wanted her to speak to my 9 year old daughter about coping. I did feel defensive during the conversation. The sw wants me to give my daughter another opportunity. I told her that I didn't think I could risk another opportunity. I did look into guardianship. Texas has some specific laws about obtaining medical care (specifically mentioning inpatient and outpatient psychiatric care ) for a ward. I can contact Adult protective services too. I'm feeling some anxiety thinking of her on the streets and having a professional advocate for my daughter to come home. I need to collect my thoughts and remind myself of my responsibilities. I know this is not the worst heartbreak I'll feel
Sam, I am also in awe of your strength, and I know it still feels bad too. You did a very difficult thing today........be especially nurturing and kind to yourself.
I've learned from reading on this forum, that Social Services will initially ask if we will take our adult kids, and can indeed apply some pressure, even using guilt.....however, as the SW mentioned, SHE will find a place for your daughter.
We all walk through this one step at a time......and on many, many occasions, without our interference or help, resources find their way to our children.
Prayers sent for you and for your daughter.........
I've learned from reading on this forum, that Social Services will initially ask if we will take our adult kids, and can indeed apply some pressure, even using guilt.....however, as the SW mentioned, SHE will find a place for your daughter.
We all walk through this one step at a time......and on many, many occasions, without our interference or help, resources find their way to our children.
Prayers sent for you and for your daughter.........
It's good that your daughter is willing to work with sw.
Of course she wants to come home. This is the cycle of our difficult adult children. They hate to be in our homes because we have rules so they leave to live life on their terms which always becomes unmanageable and then they want to come home to feel safe and secure, until they hate being there and they leave again.
Yours is more complex than most because your daughter is so ill.
I admire your strength and resolve in standing firm that she cannot come home.
This is encouraging.
Of course she wants you to give her another opportunity, it would make her job easier. What the sw is not seeing is that you have given your daughter "another' and "another" opportunity.
Unless someone has been in our shoes, they just do not understand that we as parents can only take so much. It's easy for an outsider to look in and say "I would do this or that" or "I would never allow my child to be homeless" I would give these people a week in any one of our homes to deal with what we have all dealt with before they would run screaming from the house in defeat. You just as I, did not "allow" our adult children to be homeless. Our children have chosen that life for themselves. They have put their drug use above the love of family.
We, the parents here on this site have fought long and hard to save our children from going down a destructive path. We have come to realize that we do not have the power to save them, we only have the power to save ourselves.
((HUGS)) to you Sam.
New Leaf
Well-Known Member
Sam, you are an amazing woman.
The SW will advocate another chance, another opportunity with focus on your daughters wishes, not taking into consideration repercussions for you and your family, your minor children, or even hearing your story? There is something very lacking in that...... to put it lightly...unprofessional, even condescending .... so again, you are left to stand your ground and defend your right to a peaceable home, versus the horrible reality that your daughter was out of control in your house, left there of her own accord, now homeless, terminally ill and not feeling well. Of course she would want to "come home".
What a terrible thing for you Sam. I am so sorry for how impossibly difficult and unfair this whole situation is. I am seeing the imagery of the Edvard Munch painting " The Scream" and remembering how many times I silently screamed in my own mind at the unbelievable insanity of it all.
Outsiders do not have a clue.
This is much much more than explaining to a nine year old about "coping". You are not trying to protect your young children from the reality of terminal illness.
You are making sure they have a safe and peaceful home.
I would be on the defensive as well, maybe even teeth gritting and hackles raised, with the thought going round and round my head "Hello Ms. stranger SW, You have NO CLUE what we have been through..........otherwise you would not even be asking me this........"
I am feeling indignant at the conversation.
Coping. Huh.
Of course the SW should find your daughter a place, that is her job.
Who knows what may transpire down the road, as you all navigate this day to day. But this day, with all that has happened, is not a time for your 24 year old to walk through that proverbial revolving door.
There are resources out there. A place for your daughter aside from your home, where you could go be with her, when you choose.
Neutral ground.
Your home is your sanctuary.
One thing I have fought for, past the enabling, past those awful pangs of guilt and grief of saying no more....... is my right to come home.
My right to come home. To have the place I worked hard for to feel like home.
Home to peace, home to my sanctuary.
After years and years, it was not home, I didn't want to be there.
A real home for my son, who I was surely in danger of losing.........to the absurdity of trying over and over to help and house sisters who had no intention of following rules......simple, sensible, ways of living that showed consideration for the rest of the family.
Our home was turned in to a war zone. We would never know what to expect, always on edge. Enough was enough.
Go in peace, go with God, find your way.
Out they went. Out there.
A certain peace fell over the household. A breathing time.......
It does not make the alternative any easier to swallow. The knowing they are out there in this degraded substance abusing world, choosing terribly.........the effort it takes to live with that knowledge and keep keeping on despite our deepest fears.
There is a feeling of peace in the home, but there is also that damn ache.
This is not selfishness we are talking about.....it is self preservation.
It is not a decision easily made......
It is a whole new thing to "cope" with. Not knowing where or how they are, then knowing, truly, I don't know what's worse?
Coping?
Huh.
Every parent and sibling here on CD has put new meaning to that word, beyond what anyone could ever imagine.
Coping.
For every astonished look upon an "advocates" face, I say......."You try it".
Take a walk in our shoes.
It is hell to deal with.
Pure insidious never ending dripping water torture. Tried over and again to "fix" it, at the expense of everyone else.
Nothing worked, because our beloved d cs will do what they choose to, what they want to, despite the affect on loved ones.
Forgive my rambling. I am tired of those who would judge without understanding.
Our responsibility is to care for our minor children and ensure their well being and safety in their own home.
They should be able to come home to peace and respite, not a ticking time bomb.
It is not that you would not help your terminally ill daughter, Sam. All of your posts are a testimony to that heartache that only a mother in your position would know. You would and have done everything in your power to help her.
But, she has to want to help herself.
She has a SW, a good thing. It is a start. Resources. Good. I pray that SW finds a place, for your sake, peace of mind, and your daughters safety.
You are a wonderful person Sam. A loving, kind and strong mother. Don't you ever let outsiders, well meaning family members, SW's or anyone else make you feel any different.
You have given your all, and still are. Love comes in many, many different forms. Love at times, as hard as it may be, says "no". Says hold on a second, no more nonsense, feeling of entitlement and overrunning my home. I love you, but no, you cannot live here. It is not healthy for you, or anyone else.
Oftentimes, that becomes the catalyst for change. Becomes the chance for our d cs to take the reins and recognize their responsibility for their own lives. I am thinking of my own two, really, their being in my home is just as detrimental to them as it is for us. That old pattern just keeps repeating itself. They seem to regress. Or squirm and create havoc to force an ultimatum.
Someone has to break free from it.
I think that is love. Recognizing that, and having the courage to say no. No. More.
These are very very difficult circumstances you are in.
Please take good care of yourself. Lean upon your higher power. Take time to rebuild and replenish your spirit.
Know that all here are pulling for you. You are not alone.
Prayers going up for you, your family and your daughter.
(((Hugs)))
Leafy
The SW will advocate another chance, another opportunity with focus on your daughters wishes, not taking into consideration repercussions for you and your family, your minor children, or even hearing your story? There is something very lacking in that...... to put it lightly...unprofessional, even condescending .... so again, you are left to stand your ground and defend your right to a peaceable home, versus the horrible reality that your daughter was out of control in your house, left there of her own accord, now homeless, terminally ill and not feeling well. Of course she would want to "come home".
What a terrible thing for you Sam. I am so sorry for how impossibly difficult and unfair this whole situation is. I am seeing the imagery of the Edvard Munch painting " The Scream" and remembering how many times I silently screamed in my own mind at the unbelievable insanity of it all.
Outsiders do not have a clue.
This is much much more than explaining to a nine year old about "coping". You are not trying to protect your young children from the reality of terminal illness.
You are making sure they have a safe and peaceful home.
I would be on the defensive as well, maybe even teeth gritting and hackles raised, with the thought going round and round my head "Hello Ms. stranger SW, You have NO CLUE what we have been through..........otherwise you would not even be asking me this........"
I am feeling indignant at the conversation.
Coping. Huh.
Of course the SW should find your daughter a place, that is her job.
Who knows what may transpire down the road, as you all navigate this day to day. But this day, with all that has happened, is not a time for your 24 year old to walk through that proverbial revolving door.
There are resources out there. A place for your daughter aside from your home, where you could go be with her, when you choose.
Neutral ground.
Your home is your sanctuary.
One thing I have fought for, past the enabling, past those awful pangs of guilt and grief of saying no more....... is my right to come home.
My right to come home. To have the place I worked hard for to feel like home.
Home to peace, home to my sanctuary.
After years and years, it was not home, I didn't want to be there.
A real home for my son, who I was surely in danger of losing.........to the absurdity of trying over and over to help and house sisters who had no intention of following rules......simple, sensible, ways of living that showed consideration for the rest of the family.
Our home was turned in to a war zone. We would never know what to expect, always on edge. Enough was enough.
Go in peace, go with God, find your way.
Out they went. Out there.
A certain peace fell over the household. A breathing time.......
It does not make the alternative any easier to swallow. The knowing they are out there in this degraded substance abusing world, choosing terribly.........the effort it takes to live with that knowledge and keep keeping on despite our deepest fears.
There is a feeling of peace in the home, but there is also that damn ache.
This is not selfishness we are talking about.....it is self preservation.
It is not a decision easily made......
It is a whole new thing to "cope" with. Not knowing where or how they are, then knowing, truly, I don't know what's worse?
Coping?
Huh.
Every parent and sibling here on CD has put new meaning to that word, beyond what anyone could ever imagine.
Coping.
For every astonished look upon an "advocates" face, I say......."You try it".
Take a walk in our shoes.
It is hell to deal with.
Pure insidious never ending dripping water torture. Tried over and again to "fix" it, at the expense of everyone else.
Nothing worked, because our beloved d cs will do what they choose to, what they want to, despite the affect on loved ones.
Forgive my rambling. I am tired of those who would judge without understanding.
Our responsibility is to care for our minor children and ensure their well being and safety in their own home.
They should be able to come home to peace and respite, not a ticking time bomb.
It is not that you would not help your terminally ill daughter, Sam. All of your posts are a testimony to that heartache that only a mother in your position would know. You would and have done everything in your power to help her.
But, she has to want to help herself.
She has a SW, a good thing. It is a start. Resources. Good. I pray that SW finds a place, for your sake, peace of mind, and your daughters safety.
You are a wonderful person Sam. A loving, kind and strong mother. Don't you ever let outsiders, well meaning family members, SW's or anyone else make you feel any different.
You have given your all, and still are. Love comes in many, many different forms. Love at times, as hard as it may be, says "no". Says hold on a second, no more nonsense, feeling of entitlement and overrunning my home. I love you, but no, you cannot live here. It is not healthy for you, or anyone else.
Oftentimes, that becomes the catalyst for change. Becomes the chance for our d cs to take the reins and recognize their responsibility for their own lives. I am thinking of my own two, really, their being in my home is just as detrimental to them as it is for us. That old pattern just keeps repeating itself. They seem to regress. Or squirm and create havoc to force an ultimatum.
Someone has to break free from it.
I think that is love. Recognizing that, and having the courage to say no. No. More.
These are very very difficult circumstances you are in.
Please take good care of yourself. Lean upon your higher power. Take time to rebuild and replenish your spirit.
Know that all here are pulling for you. You are not alone.
Prayers going up for you, your family and your daughter.
(((Hugs)))
Leafy
Thank you jetsam Tanya M and "recoveringenabler for your supportive words. For a moment there I began to lose sight. Recoveringenabler, You pointed out the social worker's tactics/ strategies/ job and reminded me of the sw's own words that she'll find her a place to live - I'm most grateful for you for that. I couldn't "see" that on my own with- all these emotions. I am especially focusing on your peace-giving words:
We all walk through this one step at a time......and on many, many occasions, without our interference or help, resources find their way to our children.
New leaf, i am still taking in your comments. if you are rambling, please don't apologize and please continue with- it. Your words are healing waters raging from flood gates feeding my soul.
I'm blessed by being able to be a part of this strong insightful community. I consider this community one of my biggest blessings. I read and reread all the comments and continue to gain and refuel from it. Each time finding something I didn't before. This morning, My prayers and positive energy are for your children, our children.
We all walk through this one step at a time......and on many, many occasions, without our interference or help, resources find their way to our children.
New leaf, i am still taking in your comments. if you are rambling, please don't apologize and please continue with- it. Your words are healing waters raging from flood gates feeding my soul.
I'm blessed by being able to be a part of this strong insightful community. I consider this community one of my biggest blessings. I read and reread all the comments and continue to gain and refuel from it. Each time finding something I didn't before. This morning, My prayers and positive energy are for your children, our children.
stressedmama
Active Member
Sam, just catching up. I am so sorry for all you are going through. What a difficult situation to be in. I can't even imagine. But your strength and resolve is so impressive. Sending hugs and prayers.
jetsam
Active Member
Leafy, so many of your words ring true! yes I would challenge any one of those who look, with that downward glance ,that judgmental frown , or the raised eyebrow (that without words ,conveys a thought that we were inept at raising our children, and that we are cold callous subhuman beings ).walk in my shoes for just one week...then we will talk!, because I know they would pull every hair out of their heads and run down the street shrieking as if they had witnessed a horror movie! Only here can we vent and ask for the understanding and compassion we so desperately need! free of judgement and discrimination. To be who we are , all of us vulnerable,sensitive, caring human beings who just seek the peace and happiness that has eluded us for so so long. To everyone here i know that you all walk in my shoes every day and my arms encompass you all in a warm heartfelt hug.
Thank you community of strong parents for the support and sharing your history. I've been on auto pilot all day and meditating(trying to). The most difficult time is when I'm going to bed or I'm in a moment of transition/rest. The tears come without warning I'm rereading your words of acknowledgement support and heartbreaks and then I send y'all prayers and don't feel so alone and am able to refocus somewhat. Grateful for for the companionship in this forum.
pacific ocean
Member
sam, thank you for stopping by on my thread leaving kind words. I just read your post and want to tell you how sorry I am to know what you have been going through right now. My prayers are with you and your family. Sending you big hugs from the other side of the world.
SeekingStrength
Well-Known Member
Sam,
I am so very sorry.
Forgive me if I missed this, but have you checked with this hospice to see if there is a hospice house in your state? If not with this hospice, perhaps another one?
I have been with hospices for over 10 years as a volunteer and know that different providers offer different services. Patients are often released from hospice. Please stay with us and keep us posted.
I am hoping you can find a hospice facility for your daughter.
I am so very sorry.
Forgive me if I missed this, but have you checked with this hospice to see if there is a hospice house in your state? If not with this hospice, perhaps another one?
I have been with hospices for over 10 years as a volunteer and know that different providers offer different services. Patients are often released from hospice. Please stay with us and keep us posted.
I am hoping you can find a hospice facility for your daughter.
Hi Seeking Strength, thank you for your comment. If I become involved in her care again, I'm definitely looking into this more. there is one hospice in our county that is currently "housing" for those needing a few weeks of hospice care and at capacity. Since I am not "cooperating/assisting" the goal of her caseworker, I've been kinda left out of the loop and reminded that she's an adult and can't disclose info etc etc. I rvcd a couple of text messages from the case worker asking if I have contact info for family/friends as they are having trouble contacting my daughter. Last week she made a comment that she hadn't been on her pain medications / mind altering rxs for a week which to me means she's no longer receiving hospice. The Hospice Nurse did explain to us that if she sought pain medications or curative care she would be "taken off" hospice and then could go back on if appropriate. She's been to ER for disease pain mgmt, bronchitis, seizure fall and stitches since October (the month she went into hospice care) . Currently, my daughter is now staying a few hours away from where we live and I don't think that she's thought about medical care/hospice.
BusynMember
Well-Known Member
This is heartbreaking.
I am so very sorry for you and your daighter.
I am so very sorry for you and your daighter.
Copabanana
Well-Known Member
Sam: There are no words to express how sorry I am. Because I have a son who has been homeless and mentally ill with a chronic illness for which he is indifferent about receiving treatment, this is my nightmare. The one think I believe I could never face, but realize I may. Any parent may.
She told me "well, it seems like you are not ready for hospice."
On the contrary, I said, I think you might consider if you are appropriate to work in hospice care, if you are unwilling to hear anybody's voice except your own.
Banish the guilt. I can see it clearly. There are millions and millions of people who die as indigents. Hospitals cannot turn them back into the street if nobody accepts them. There was a few day period when I did not accept my mother back, because I believe she had not been provided the necessary treatments. It was not lack of love or care for my mother.
They have no moral power over you and no legal power either.
Your story illustrates the position that all of us are in. We love children who hurt themselves and hurt others. Nothing ever diminishes our love for them, at heart. But each of us faces having to decide about limits and boundaries. The reality for each of us, is we fear that our children will stay alive, every day. We do that because we know the ever lurking reality we face that our situation will be your own.
I sometimes have a fantasy that should my child die before me, I would bring him home and all of the love that I have felt for him would return in that time, and that his love for me would return too, and all our love would illuminate all of the darkness in which we have lived. It is that, a fantasy.
Your daughter knows you love her. She has always known. My son too knows I love him. That is the beginning and the end of the story.
Life is about love but it is also about realities to be faced. Sometimes it feels like the horror of reality is so great that it will kill us and we wish it would. I have gone through a period like this. With great guilt and responsibility thrown into the mix.
You are going through such an ordeal, a trial by fire. And you have been unflinching in your commitment to do the right thing, by everybody.
You are doing every single thing a loving mother would do.
You are standing strong for your daughter and your family and yourself. I so admire you for how you stay in the present and handle everything as it comes, investigating options, open to all, and doing the best you can. Nobody could do better.
This is bullshxt. My mother went on hospice the day before she died and the hospice troupe came to the house. I felt very pressured by one person who believed she was g-d himself.
She told me "well, it seems like you are not ready for hospice."
On the contrary, I said, I think you might consider if you are appropriate to work in hospice care, if you are unwilling to hear anybody's voice except your own.
Banish the guilt. I can see it clearly. There are millions and millions of people who die as indigents. Hospitals cannot turn them back into the street if nobody accepts them. There was a few day period when I did not accept my mother back, because I believe she had not been provided the necessary treatments. It was not lack of love or care for my mother.
They have no moral power over you and no legal power either.
Your story illustrates the position that all of us are in. We love children who hurt themselves and hurt others. Nothing ever diminishes our love for them, at heart. But each of us faces having to decide about limits and boundaries. The reality for each of us, is we fear that our children will stay alive, every day. We do that because we know the ever lurking reality we face that our situation will be your own.
I sometimes have a fantasy that should my child die before me, I would bring him home and all of the love that I have felt for him would return in that time, and that his love for me would return too, and all our love would illuminate all of the darkness in which we have lived. It is that, a fantasy.
Your daughter knows you love her. She has always known. My son too knows I love him. That is the beginning and the end of the story.
Life is about love but it is also about realities to be faced. Sometimes it feels like the horror of reality is so great that it will kill us and we wish it would. I have gone through a period like this. With great guilt and responsibility thrown into the mix.
You are going through such an ordeal, a trial by fire. And you have been unflinching in your commitment to do the right thing, by everybody.
You are doing every single thing a loving mother would do.
You are standing strong for your daughter and your family and yourself. I so admire you for how you stay in the present and handle everything as it comes, investigating options, open to all, and doing the best you can. Nobody could do better.
