What do I ask a pain / palliative care specialist to help my Mum?
July 22, 2018 2:49 AM Subscribe
My elderly mother is at the end of her life, desperately frail, with multiple competing diseases and injuries. She is in absolute agony, treated inadequately. We have an appointment with a palliative care / pain specialist tomorrow, to which I'll escort her. But… what do I say/ask to get the outcome I want - a comfortable end of life for my mother, overseen by the pain specialist or an external palliative care agency, not the nursing home, or her general practitioner. (OK with nursing home implementing, but no faith at all in the GP at this point.) Snowstorm follows.
What I want
I want her suffering eased effectively and to know that someone other than the kind but ineffective nursing home, and the useless and unsympathetic GP are in charge of it. I will pay and do pretty much anything within my means. She gave me life, the least I can do is pursue every avenue possible to ease her death.
My questions
I am just so upset and on my absolute last nerve after weeks of hearing my mother in distress, while managing a funeral, probate, legal and financial affairs, on top of a fairly intense job, my own health issues… I just can't think straight at this point.
What do I ask this pain specialist for? I literally have no idea. What words, or script, do I need to use to get what I want this to happen? How do I navigate the difficulties with my Mother's communication - described below? And what can I reasonably expect of a pain / palliative care specialist?
Pain
My mother, 80, has had rheumatoid arthritis for 35+ years and has severe contractus in her hands. They are completely clawed and she has been unable to use a pen for some time, and unable to feed herself for about year. Before entering high-level nursing care three years ago, she had had nine (NINE!) falls, resulting in various fractures, including, finally, fractured ribs and a fractured pelvis. As far as I'm aware, these injuries have never actually healed fully and my mother's rheumatoid arthritis is still active. She also has severe osteoarthritis and is basically bent double as her spine has crumbled. She is paralysed on one side from a stroke, and in her legs and other side from the arthritis. An infection six months ago has left her unable to speak other than to say 'yes', 'no' and 'help'. She has a tiny amount of movement in her right hand which she can *sometimes* use to activate a special soft/sensitive touch buzzer the nursing home have found for her. She also has a number of pressure sores. (These are treated and she is turned / moved regularly, but nonetheless, they are open ulcers and very painful.)
She has begun vomiting in the morning - before any of the narcotic painkillers mentioned below are given, and in fact since before they were prescribed this time.
My father's death
My Dad died three weeks ago. Of course my mother is grieving him - they were partners for 45 years and inseparable, especially when they entered nursing care together. When he fell and had a heart attack (simultaneously - he never woke up and honestly, had as good a death as you could wish for), my mother was admitted to hospital with him so they would not be separated, stayed in the same room as him, and 24 hours later they were both discharged back to their nursing home for my father to die, with palliative care in the form of a morphine pump. Staff at the nursing home placed them in the same room so my mother could be with my father at all times. She and I were both with him when he died, very gently stopping breathing about two days after coming 'home'. This has been very, very physically hard on her - ambulance transfers, a day and night in a large public hospital where somehow all she received to eat was one serve of Ensure, then days of sleeplessness as my father died beside her. Since my father's death, her pain has escalated to the point where it is extreme. The day of the funeral was also very physically taxing - wheelchair taxi to church, cemetary, wheelchair over rough ground at cemetary, wheelchair taxi back to wake, walk from wake to home over bumpy footpaths. She was shattered.
I think there is a tendency for the nursing home staff to conflate her emotional distress with her physical distress. However. My mother and father, while utterly co-dependent had a tremendously volatile and tempestuous relationship and fought loudly, and viciously for their entire married lives, including in the nursing home, until quite recently when my mother stopped being able to speak and a certain calm descended. My father had vascular dementia which, while pretty well managed, made him tremendously difficult and wearing for my mother to be around. She also refused to actually admit that he had dementia (?!) and insisted that he was just being difficult. Denial was definitely not just a river in Egypt in our family. She is also able to say yes/no to 'are you in pain?' (Almost always 'yes') or 'are you sad about dad?' which gets a more mixed 'no… yes.'
Causes of pain
The pain is worst when she is being moved - transferred from recliner chair to bed, or bed to wheelchair. When we have an ambulance transfer or wheelchair taxi ride, she is in agony - lots of bumps on the roads and a lot of jolting about. She will usually need to spend the next day in bed. However, she is in pain in her recliner, or in bed. The recliner is a special medical one sourced by her occupational physio therapist and is super soft and comfy. The bed has a medical air mattress to alleviate pressure on her joints and soft tissues, and can be adjusted so she is sitting up / down to various degrees. She is still in pain and crying out. Sometimes she needs to be positioned in the recliner or bed and this is very painful too.
Communication and Cognition
The GP has told me that she's just 'not there' and has limited cognitive function and that I’m seeing my mother as she was. I just don't think that's true. I'm under no illusion about my mother's level of impairment and won't, for example, be asking her for investment advice any time soon. However, she can answer yes and no to questions, and indicate preferences. E.g. Do you want me to put the photos here? ("No, no") or here? (Yes,yes.) Are you in pain? (YES YES YES) If I touch you, can you tell me where it hurts? (Yes). I got 'yesses' to shoulders, arms, hands and head.' and a 'no' to tummy, legs and feet. Plus, for better or worse, I've known my mother for 45 years. She is tremendously diminished, but she is still in there, the core of her personality - tough, uncompromising - intact. She is still, to a degree, even able to enjoy life. She loves receiving visits from friends (although tires quickly), focuses on photos when shown them, can giggle at jokes (and in the right places, multiple times, to different people, so I don't think this is a coincidence or a learned response to tone). She will let me feed her favourite dark chocolate and sips of coffee even when she is very distressed. She finds prayer comforting. She is *there*, not some absent vegetable.
Current treating staff
The nursing home are kind and sympathetic, but essentially passive. The nurses look in on her regularly, but especially at night when staff are fewer, she can the fifth person ringing a buzzer or crying out, and will have to wait - and wait - for pain relief. Sometimes the nurses are all attending to an emergency on another ward, so no one can even hear her cry out or press the buzzer. She can't effectively communicate when she is in pain or advocate for her own relief. Her GP, is, at best, passive. He does not check in on her at the nursing home, and the nursing home rarely raise anything with him. When I came to see him to ask for a referral to the pain specialist, his initial response was that he wasn't aware she'd been in pain and to be annoyed that I wanted to go straight to a specialist rather than let him treat her first. He had been on leave for three weeks following my Dad's death, and I saw him at the first opportunity. She had been receiving treatment (Endone as needed) from the palliative care doctor at the large public hospital my father was treated at, and it took three weeks for a picture to crystallise for me that this really was NOT working. He wrote on her referral that he was not aware she was in pain, which absolutely beggars belief given the symptoms I've listed above, all of which he is aware of and pre-date my father's death, altho with less severity. The treatment he has prescribed between this visit, and the pain specialist appointment has not worked, and he has not responded to phone calls from the nursing home in the interim. I am… not impressed.
I flag this because if there is going to be improved treatment, it will need to be me pursuing it, and ensuring it happens. Everyone is very happy to do these things once I've organised them, but will not organise anything themselves.
Current medication
When she has had exacerbations of pain before - much less than this - the GP's only solutions have been endone and fentanyl patches. Her rheumatic pain generally was treated with a combination of coedine / paracetamol. The endone was OK but not particularly effective, and fentanyl turned her into a drooling zombie. (I literally thought she was having a stroke, but no, she was… on the nod.) She is currently wearing a narcotic patch (not fentanyl this time, I will have the medication list with me at the visit tomorrow) and receiving Endone 'as needed'. Which, of course, she can't communicate unless a nurse stops in and asks. Which happens mostly… but sometimes doesn't. She is *still* having breakthrough pain. The patch also seems (to me) to be making her quite unwell. She is literally grey, sweating a lot, and much less engaged/responsive - without seeming to have much relief.
Context
My mother was *extremely* high functioning before she became unwell. As a child topped her state (in Australia) in her exams, had a long and successful career, was creative, energetic, a voracious reader, highly opinionated and articulate. She was a real fighter. Moreover she has always had a tremendously high pain tolerance, living with rheumatoid arthritis for years without slowing down. During the cracked ribs episode she was insisting it didn't hurt. (And indeed, despite a scan that showed the cracks, I never even saw her flinch.) She did take low dose codeine paracetamol - but still. She is very definitely of the mindset that feelings, crying, and pain are weakness, and not to be shown. So when my mother says she is in pain, and is crying out 'no, no, no' like a child being tortured, I believe she is in actual and severe pain, not, for example, grieving my father, or in emotional distress.
Me
I'm an only child, I live interstate and for reasons to do with my husband's health (another complex story) cannot move back to my home state. (Climate and health care not OK for his particular set of issues.) I can, however, fly up as needed to take her to appointments, and will do this. My mother was, as well as an amazing person, was a tremendously difficult person, but she moved heaven and earth to help my father and I when we were both, at separate times, seriously unwell. Regardless, I wouldn't leave a stranger by the side of the road in this state without doing everything possible to help them, let alone the person who gave me life. I am her Enduring Power of Attorney, and the substitute decision maker on her Advanced Health Care Directive. (Thank god she still had capacity to draw up and sign these documents with her solicitor when she first went into care.)
Religion, Assisted Dying and Prolonging Life
My mother is a devout Catholic, her priest visits her and is a good, kind man. A lay chaplain also visits to provide Communion. I'm a rock solid atheist but more than happy to say as many Rosaries as she likes if it will help. (And it does seems to, so I have been doing that, plus high rotation of 'Gods Bookmark'.) A trip to Dignitas or similar would NOT be something my mother would wish for, so please don't suggest that. As far as prolonging life goes, I have until now, asked the nursing home to treat any infection in the home, rather than admitting her to hospital. I am confident this would have been my mother's wish while my father were alive. Now he is gone, I am thinking about changing that to 'do not treat - make comfortable' and letting nature take its course. I am as sure as I can be that any treatment, should she survive it, will further worsen her condition and quality of life, and that this is not what she would wish for.
Extra Care, Death Doulas etc
Death doulas aren't really a thing where I am, at least not by this name. I'm in Brisbane Australia if anyone knows of any private service that could hire though, let me know. She receives extra care / companionship visits already from an excellent agency, but they are aged care workers / carers, not medical professionals.
Resources
My mother and I are well resourced enough to pay for any treatment needed, plus we are in Australia where healthcare is reasonable and affordable. This can't be in-home though - she needs high-level nursing care at this point i.e. two person assist, RN on duty, GP on call. I can pay for a palliative care nurse or service to visit her in the nursing home - if that is even a thing? I don't know. The home is familiar now too, and I wouldn't want to destabilise her.
Help AskMe. This is the worst time of my life (although nothing compared to my mother's suffering) and I just don't know what to do or say at this appointment tomorrow to get the best result for her.
What I want
I want her suffering eased effectively and to know that someone other than the kind but ineffective nursing home, and the useless and unsympathetic GP are in charge of it. I will pay and do pretty much anything within my means. She gave me life, the least I can do is pursue every avenue possible to ease her death.
My questions
I am just so upset and on my absolute last nerve after weeks of hearing my mother in distress, while managing a funeral, probate, legal and financial affairs, on top of a fairly intense job, my own health issues… I just can't think straight at this point.
What do I ask this pain specialist for? I literally have no idea. What words, or script, do I need to use to get what I want this to happen? How do I navigate the difficulties with my Mother's communication - described below? And what can I reasonably expect of a pain / palliative care specialist?
Pain
My mother, 80, has had rheumatoid arthritis for 35+ years and has severe contractus in her hands. They are completely clawed and she has been unable to use a pen for some time, and unable to feed herself for about year. Before entering high-level nursing care three years ago, she had had nine (NINE!) falls, resulting in various fractures, including, finally, fractured ribs and a fractured pelvis. As far as I'm aware, these injuries have never actually healed fully and my mother's rheumatoid arthritis is still active. She also has severe osteoarthritis and is basically bent double as her spine has crumbled. She is paralysed on one side from a stroke, and in her legs and other side from the arthritis. An infection six months ago has left her unable to speak other than to say 'yes', 'no' and 'help'. She has a tiny amount of movement in her right hand which she can *sometimes* use to activate a special soft/sensitive touch buzzer the nursing home have found for her. She also has a number of pressure sores. (These are treated and she is turned / moved regularly, but nonetheless, they are open ulcers and very painful.)
She has begun vomiting in the morning - before any of the narcotic painkillers mentioned below are given, and in fact since before they were prescribed this time.
My father's death
My Dad died three weeks ago. Of course my mother is grieving him - they were partners for 45 years and inseparable, especially when they entered nursing care together. When he fell and had a heart attack (simultaneously - he never woke up and honestly, had as good a death as you could wish for), my mother was admitted to hospital with him so they would not be separated, stayed in the same room as him, and 24 hours later they were both discharged back to their nursing home for my father to die, with palliative care in the form of a morphine pump. Staff at the nursing home placed them in the same room so my mother could be with my father at all times. She and I were both with him when he died, very gently stopping breathing about two days after coming 'home'. This has been very, very physically hard on her - ambulance transfers, a day and night in a large public hospital where somehow all she received to eat was one serve of Ensure, then days of sleeplessness as my father died beside her. Since my father's death, her pain has escalated to the point where it is extreme. The day of the funeral was also very physically taxing - wheelchair taxi to church, cemetary, wheelchair over rough ground at cemetary, wheelchair taxi back to wake, walk from wake to home over bumpy footpaths. She was shattered.
I think there is a tendency for the nursing home staff to conflate her emotional distress with her physical distress. However. My mother and father, while utterly co-dependent had a tremendously volatile and tempestuous relationship and fought loudly, and viciously for their entire married lives, including in the nursing home, until quite recently when my mother stopped being able to speak and a certain calm descended. My father had vascular dementia which, while pretty well managed, made him tremendously difficult and wearing for my mother to be around. She also refused to actually admit that he had dementia (?!) and insisted that he was just being difficult. Denial was definitely not just a river in Egypt in our family. She is also able to say yes/no to 'are you in pain?' (Almost always 'yes') or 'are you sad about dad?' which gets a more mixed 'no… yes.'
Causes of pain
The pain is worst when she is being moved - transferred from recliner chair to bed, or bed to wheelchair. When we have an ambulance transfer or wheelchair taxi ride, she is in agony - lots of bumps on the roads and a lot of jolting about. She will usually need to spend the next day in bed. However, she is in pain in her recliner, or in bed. The recliner is a special medical one sourced by her occupational physio therapist and is super soft and comfy. The bed has a medical air mattress to alleviate pressure on her joints and soft tissues, and can be adjusted so she is sitting up / down to various degrees. She is still in pain and crying out. Sometimes she needs to be positioned in the recliner or bed and this is very painful too.
Communication and Cognition
The GP has told me that she's just 'not there' and has limited cognitive function and that I’m seeing my mother as she was. I just don't think that's true. I'm under no illusion about my mother's level of impairment and won't, for example, be asking her for investment advice any time soon. However, she can answer yes and no to questions, and indicate preferences. E.g. Do you want me to put the photos here? ("No, no") or here? (Yes,yes.) Are you in pain? (YES YES YES) If I touch you, can you tell me where it hurts? (Yes). I got 'yesses' to shoulders, arms, hands and head.' and a 'no' to tummy, legs and feet. Plus, for better or worse, I've known my mother for 45 years. She is tremendously diminished, but she is still in there, the core of her personality - tough, uncompromising - intact. She is still, to a degree, even able to enjoy life. She loves receiving visits from friends (although tires quickly), focuses on photos when shown them, can giggle at jokes (and in the right places, multiple times, to different people, so I don't think this is a coincidence or a learned response to tone). She will let me feed her favourite dark chocolate and sips of coffee even when she is very distressed. She finds prayer comforting. She is *there*, not some absent vegetable.
Current treating staff
The nursing home are kind and sympathetic, but essentially passive. The nurses look in on her regularly, but especially at night when staff are fewer, she can the fifth person ringing a buzzer or crying out, and will have to wait - and wait - for pain relief. Sometimes the nurses are all attending to an emergency on another ward, so no one can even hear her cry out or press the buzzer. She can't effectively communicate when she is in pain or advocate for her own relief. Her GP, is, at best, passive. He does not check in on her at the nursing home, and the nursing home rarely raise anything with him. When I came to see him to ask for a referral to the pain specialist, his initial response was that he wasn't aware she'd been in pain and to be annoyed that I wanted to go straight to a specialist rather than let him treat her first. He had been on leave for three weeks following my Dad's death, and I saw him at the first opportunity. She had been receiving treatment (Endone as needed) from the palliative care doctor at the large public hospital my father was treated at, and it took three weeks for a picture to crystallise for me that this really was NOT working. He wrote on her referral that he was not aware she was in pain, which absolutely beggars belief given the symptoms I've listed above, all of which he is aware of and pre-date my father's death, altho with less severity. The treatment he has prescribed between this visit, and the pain specialist appointment has not worked, and he has not responded to phone calls from the nursing home in the interim. I am… not impressed.
I flag this because if there is going to be improved treatment, it will need to be me pursuing it, and ensuring it happens. Everyone is very happy to do these things once I've organised them, but will not organise anything themselves.
Current medication
When she has had exacerbations of pain before - much less than this - the GP's only solutions have been endone and fentanyl patches. Her rheumatic pain generally was treated with a combination of coedine / paracetamol. The endone was OK but not particularly effective, and fentanyl turned her into a drooling zombie. (I literally thought she was having a stroke, but no, she was… on the nod.) She is currently wearing a narcotic patch (not fentanyl this time, I will have the medication list with me at the visit tomorrow) and receiving Endone 'as needed'. Which, of course, she can't communicate unless a nurse stops in and asks. Which happens mostly… but sometimes doesn't. She is *still* having breakthrough pain. The patch also seems (to me) to be making her quite unwell. She is literally grey, sweating a lot, and much less engaged/responsive - without seeming to have much relief.
Context
My mother was *extremely* high functioning before she became unwell. As a child topped her state (in Australia) in her exams, had a long and successful career, was creative, energetic, a voracious reader, highly opinionated and articulate. She was a real fighter. Moreover she has always had a tremendously high pain tolerance, living with rheumatoid arthritis for years without slowing down. During the cracked ribs episode she was insisting it didn't hurt. (And indeed, despite a scan that showed the cracks, I never even saw her flinch.) She did take low dose codeine paracetamol - but still. She is very definitely of the mindset that feelings, crying, and pain are weakness, and not to be shown. So when my mother says she is in pain, and is crying out 'no, no, no' like a child being tortured, I believe she is in actual and severe pain, not, for example, grieving my father, or in emotional distress.
Me
I'm an only child, I live interstate and for reasons to do with my husband's health (another complex story) cannot move back to my home state. (Climate and health care not OK for his particular set of issues.) I can, however, fly up as needed to take her to appointments, and will do this. My mother was, as well as an amazing person, was a tremendously difficult person, but she moved heaven and earth to help my father and I when we were both, at separate times, seriously unwell. Regardless, I wouldn't leave a stranger by the side of the road in this state without doing everything possible to help them, let alone the person who gave me life. I am her Enduring Power of Attorney, and the substitute decision maker on her Advanced Health Care Directive. (Thank god she still had capacity to draw up and sign these documents with her solicitor when she first went into care.)
Religion, Assisted Dying and Prolonging Life
My mother is a devout Catholic, her priest visits her and is a good, kind man. A lay chaplain also visits to provide Communion. I'm a rock solid atheist but more than happy to say as many Rosaries as she likes if it will help. (And it does seems to, so I have been doing that, plus high rotation of 'Gods Bookmark'.) A trip to Dignitas or similar would NOT be something my mother would wish for, so please don't suggest that. As far as prolonging life goes, I have until now, asked the nursing home to treat any infection in the home, rather than admitting her to hospital. I am confident this would have been my mother's wish while my father were alive. Now he is gone, I am thinking about changing that to 'do not treat - make comfortable' and letting nature take its course. I am as sure as I can be that any treatment, should she survive it, will further worsen her condition and quality of life, and that this is not what she would wish for.
Extra Care, Death Doulas etc
Death doulas aren't really a thing where I am, at least not by this name. I'm in Brisbane Australia if anyone knows of any private service that could hire though, let me know. She receives extra care / companionship visits already from an excellent agency, but they are aged care workers / carers, not medical professionals.
Resources
My mother and I are well resourced enough to pay for any treatment needed, plus we are in Australia where healthcare is reasonable and affordable. This can't be in-home though - she needs high-level nursing care at this point i.e. two person assist, RN on duty, GP on call. I can pay for a palliative care nurse or service to visit her in the nursing home - if that is even a thing? I don't know. The home is familiar now too, and I wouldn't want to destabilise her.
Help AskMe. This is the worst time of my life (although nothing compared to my mother's suffering) and I just don't know what to do or say at this appointment tomorrow to get the best result for her.
My mother had ALS and a lot of this is familiar. In terms of communication: can she blink on command? If so, consider getting an alphabet board where you point to each letter one at a time and she blinks when you get to the letter she wants and allows her to spell out words. Extremely tedious but may give her the ability to communicate more than yes or no. Unfortunately, ultimately my mother was completely “locked-in” (unable to communicate at all), and it still makes me sick to think about. Anything you can do to give your mother more of an ability to communicate would help.
As for the pain, I agree with the poster above that she may have to sacrifice some of her cognition/sharpness for adequate pain relief.
Above all, keep up the good work fiercely advocating for her with medical professionals. Don’t take no for an answer. It’s those who don’t have someone like you who slip through the cracks and don’t get the care they need or deserve at the end of life.
posted by amro at 4:46 AM on July 22, 2018
As for the pain, I agree with the poster above that she may have to sacrifice some of her cognition/sharpness for adequate pain relief.
Above all, keep up the good work fiercely advocating for her with medical professionals. Don’t take no for an answer. It’s those who don’t have someone like you who slip through the cracks and don’t get the care they need or deserve at the end of life.
posted by amro at 4:46 AM on July 22, 2018
I am not sure how it translates to Australia but, at least in the US, this sounds like the type of situation tailor-made for hospice care, also called palliative care. In the US, hospice care can be implemented in a facility, not strictly at home. They have WAY more flexibility with administering pain meds to alleviate very high pain levels. There are many services that are available only under hospice care. In short, they are amazing.
Please forgive if this doesn't exactly match hospice policy in AU, but a quick search shows some type of palliative care available. Also, forgot to mention that they are wonderful about treating based on the patient's wishes. They have no agenda in that regard.
Sending wishes for comfort to you both across the many miles from the US.
posted by Ginesthoi at 6:16 AM on July 22, 2018 [6 favorites]
Please forgive if this doesn't exactly match hospice policy in AU, but a quick search shows some type of palliative care available. Also, forgot to mention that they are wonderful about treating based on the patient's wishes. They have no agenda in that regard.
Sending wishes for comfort to you both across the many miles from the US.
posted by Ginesthoi at 6:16 AM on July 22, 2018 [6 favorites]
Seconding hospice care. If there are inpatient hospice facilities, she sounds like an excellent candidate.
posted by chesty_a_arthur at 6:42 AM on July 22, 2018
posted by chesty_a_arthur at 6:42 AM on July 22, 2018
TL:DR: I fully support hospice care, if it is an option.
It seems like your mother and my mother would have been peas in a pod. My relationship with my mother was often fraught - I was the child on which she took out her frustrations, so as much as I deeply loved her, she also caused me harm/hurt. My mom died last year from heart disease but had concurrent dx of breast cancer, diabetes, and dementia. Before she became unable to advocate for herself she was so bright and deeply engaged. Quick mind. Medically, she was opposed to medication, including those that might have benefited her. For example, she took only Tylenol for pain management following her total knee replacement because she felt anything else would dull her. She ended up receiving hospice care for roughly four years before she died at age 71.
Related to the task before you, I encourage you to follow your gut if you are compelled to help make her comfortable rather than treating disease that is not curable and is actively killing her. My own opinion after helping my mother through to her death is that trying to treat incurable disease at what is pretty obviously the end of a person's life seemed mean, and useless to make her keep hanging in there hoping for a return to better health. Hers was not a better health situation, hers was a get through this chapter and on to the next one.
Before she progressively lost her understanding and words she had already signed a medical Power of Attorney and a DNR (do not resuscitate, she did not want treatment to prolong her life) said the two things she was scared of specifically related to dying were being 1.alone and 2.in pain w/out relief. When she spent time in the hospital there was a patient advocate who was helpful in explaining options, what to do and how to do it. At the point her health rapidly declined we five children took shifts so she would not be alone but in retrospect, most importantly, we also were ferocious about advocating for her pain management.
We ferociously advocated for her ongoing pain management. There was not much else we could do to comfort her but we /could/ remind anyone remotely involved with her care that this was hers and is our collective most important concern, and we regularly Terms of Endearmented on her behalf, though (for the most part) a less scream-y version.
Fentanyl patches can be, and were for my mother, cut down into smaller sizes, and this + frequency was overseen by the hospice nurse. The dosage may be slightly less accurate, but the hospice team advocated giving enough medication without being too much for the current circumstances. Pain relief without zombification. It was exactly the right thing for my mom. They oversaw her regular diabetes and heart medications, added in meds to help manage pain, then gradually reduced/removed all other medications that were not needed for her health preservation, shifted to focusing solely on her pain management.
Also related: Your mom's declining health and imminent death are of course of primary importance, but I really, really encourage you to build a support system nest for yourself if at all possible. I cannot fathom how I myself could have managed all the things that required management. If it is possible, have a person(s) who can be the soft spot you can fall into. Friends or extended family, local grief support, etc. if there is such a thing nearby. You know how when you travel by air they do the safety lecture before the airplane takes off, and they talk about if there is a loss of cabin pressure the oxygen masks will drop from overhead? Every time that speech is given the unwavering reminder to passengers is that we should put on our own mask before helping others. THAT. I encourage you to do that.
The hospice org who helped my mom also have visiting chaplains of all faiths for spiritual support, special interest volunteers (music, art, etc.), service animals volunteers who came 1 or 2x/week just to chat. Hospice also provided all the equipment needed to help her be comfortable - different walkers and wheelchairs as her mobility declined, soft pads, support wedges, incontinence products, wheelchair and bed alarms, etc.
The most valuable-to-her-children service hospice provided for my mom was the hospice social worker. Each of them over the four years knew all the ins/outs, and most importantly they had connections to resources we didn't even know existed. A knowledgeable, competent, compassionate social worker is gold.
My heart goes out to you with all this stuff you've had to deal with, and in such rapid, overlapping succession. I hope your mother has a brief, safe, comfortable passing, and that you also can have some semblance of peace throughout.
posted by mcbeth at 9:16 AM on July 22, 2018 [3 favorites]
It seems like your mother and my mother would have been peas in a pod. My relationship with my mother was often fraught - I was the child on which she took out her frustrations, so as much as I deeply loved her, she also caused me harm/hurt. My mom died last year from heart disease but had concurrent dx of breast cancer, diabetes, and dementia. Before she became unable to advocate for herself she was so bright and deeply engaged. Quick mind. Medically, she was opposed to medication, including those that might have benefited her. For example, she took only Tylenol for pain management following her total knee replacement because she felt anything else would dull her. She ended up receiving hospice care for roughly four years before she died at age 71.
Related to the task before you, I encourage you to follow your gut if you are compelled to help make her comfortable rather than treating disease that is not curable and is actively killing her. My own opinion after helping my mother through to her death is that trying to treat incurable disease at what is pretty obviously the end of a person's life seemed mean, and useless to make her keep hanging in there hoping for a return to better health. Hers was not a better health situation, hers was a get through this chapter and on to the next one.
Before she progressively lost her understanding and words she had already signed a medical Power of Attorney and a DNR (do not resuscitate, she did not want treatment to prolong her life) said the two things she was scared of specifically related to dying were being 1.alone and 2.in pain w/out relief. When she spent time in the hospital there was a patient advocate who was helpful in explaining options, what to do and how to do it. At the point her health rapidly declined we five children took shifts so she would not be alone but in retrospect, most importantly, we also were ferocious about advocating for her pain management.
We ferociously advocated for her ongoing pain management. There was not much else we could do to comfort her but we /could/ remind anyone remotely involved with her care that this was hers and is our collective most important concern, and we regularly Terms of Endearmented on her behalf, though (for the most part) a less scream-y version.
Fentanyl patches can be, and were for my mother, cut down into smaller sizes, and this + frequency was overseen by the hospice nurse. The dosage may be slightly less accurate, but the hospice team advocated giving enough medication without being too much for the current circumstances. Pain relief without zombification. It was exactly the right thing for my mom. They oversaw her regular diabetes and heart medications, added in meds to help manage pain, then gradually reduced/removed all other medications that were not needed for her health preservation, shifted to focusing solely on her pain management.
Also related: Your mom's declining health and imminent death are of course of primary importance, but I really, really encourage you to build a support system nest for yourself if at all possible. I cannot fathom how I myself could have managed all the things that required management. If it is possible, have a person(s) who can be the soft spot you can fall into. Friends or extended family, local grief support, etc. if there is such a thing nearby. You know how when you travel by air they do the safety lecture before the airplane takes off, and they talk about if there is a loss of cabin pressure the oxygen masks will drop from overhead? Every time that speech is given the unwavering reminder to passengers is that we should put on our own mask before helping others. THAT. I encourage you to do that.
The hospice org who helped my mom also have visiting chaplains of all faiths for spiritual support, special interest volunteers (music, art, etc.), service animals volunteers who came 1 or 2x/week just to chat. Hospice also provided all the equipment needed to help her be comfortable - different walkers and wheelchairs as her mobility declined, soft pads, support wedges, incontinence products, wheelchair and bed alarms, etc.
The most valuable-to-her-children service hospice provided for my mom was the hospice social worker. Each of them over the four years knew all the ins/outs, and most importantly they had connections to resources we didn't even know existed. A knowledgeable, competent, compassionate social worker is gold.
My heart goes out to you with all this stuff you've had to deal with, and in such rapid, overlapping succession. I hope your mother has a brief, safe, comfortable passing, and that you also can have some semblance of peace throughout.
posted by mcbeth at 9:16 AM on July 22, 2018 [3 favorites]
In the US, hospice care is for-profit and not-for-profit, and I recommend the not-for-profit, if possible.
With the nursing home, I recommend going on full angry demanding mode. Don't worry about being reasonable, just push hard for better care.
This is so hard. Your Mom is lucky to have you.
posted by theora55 at 9:19 AM on July 22, 2018
With the nursing home, I recommend going on full angry demanding mode. Don't worry about being reasonable, just push hard for better care.
This is so hard. Your Mom is lucky to have you.
posted by theora55 at 9:19 AM on July 22, 2018
Oh dear, you are going through a really rough time, and being so alone with all the questions is terrible. You will manage, and remember, you are doing the best you can.
As everyone else seems to be saying: you need hospice care, and the specialist will help you with that. Hospice care can be at a hospice or at home, and it seems that your mother needs it at home, since moving her is so agonizing.
Unfortunately, even doctors who are used to dealing with old and dying patients know very little about palliative care, so you are right to focus on the specialist. I'm sure they will give you much better advice.
One of my aunts was at a hospice for several months before she died, and it was very good for her. My dad was at the same hospice on and off for the last two months, with hospice care at home when he wanted to be there. He really appreciated the care there, not least the hospice pastor. If there is a Catholic hospice near you, that might be helpful.
When my gran died, she wanted to come home, and she wanted me to be there and manage it. This is maybe more comparable to your situation. Luckily, you mother is already home, because that last transportation was horrible. I took a leave, here you can get up to six months leave to care for a dying relative, I only used a week. And then I found a private specialist nurse to help me. From the hospice care I got a special bed, and all the relevant medicine, and I made the bed with her favorite sheets. The nurse helped with administering the medicine, washing my gran, and generally making sure she was never in pain. Here, the public service is almost the same and they actually came by every day regardless of the private nurse, but I was so exhausted from the preceding years (which were similar to yours) that I needed full-time support, not just several times a day.
What I did during those last days was control the visitors and make food that she asked for but never ate. One nurse from the hospice told me to stop cooking because the food would be bad for her, but I kept on, knowing she wouldn't really eat it. I've since learnt that the sense of smell is one of the last things you loose and that she may have felt the smells of cooking were safe and homely in a good way. The visitors were all of our huge family, and some came with good intentions, some with less savory motives. I made sure everyone got their five minutes with her, but that the kind-hearted people got some more. Everyone got space and time to sit and talk with each other outside of her room.
There are things I regret. But after loosing a number of close and dear relatives over the last 15 years, I've also realized that you die as you live. My granddad was a warrior who refused to die, and he died fighting. It was painful and terrible to watch. My stepmother was the kindest and most generous person I've ever met, and she died at home surrounded by loved ones, after weeks of caring friends visiting and helping. My gran was a strict and lonely woman, and regardless of what I did to soften her last days because I loved her, her fraught relationships with other people formed the last days. I did sit alone with her during the last hours (actually most of the last week), doing what I could to make her feel safe letting go.
Good luck with it all. This will be hard, but it will pass. I'm sure you will miss her for ever, but I know from experience that doing the right thing, however hard it is, will help you through the hardest times. And you are already doing that.
posted by mumimor at 2:18 PM on July 22, 2018 [1 favorite]
As everyone else seems to be saying: you need hospice care, and the specialist will help you with that. Hospice care can be at a hospice or at home, and it seems that your mother needs it at home, since moving her is so agonizing.
Unfortunately, even doctors who are used to dealing with old and dying patients know very little about palliative care, so you are right to focus on the specialist. I'm sure they will give you much better advice.
One of my aunts was at a hospice for several months before she died, and it was very good for her. My dad was at the same hospice on and off for the last two months, with hospice care at home when he wanted to be there. He really appreciated the care there, not least the hospice pastor. If there is a Catholic hospice near you, that might be helpful.
When my gran died, she wanted to come home, and she wanted me to be there and manage it. This is maybe more comparable to your situation. Luckily, you mother is already home, because that last transportation was horrible. I took a leave, here you can get up to six months leave to care for a dying relative, I only used a week. And then I found a private specialist nurse to help me. From the hospice care I got a special bed, and all the relevant medicine, and I made the bed with her favorite sheets. The nurse helped with administering the medicine, washing my gran, and generally making sure she was never in pain. Here, the public service is almost the same and they actually came by every day regardless of the private nurse, but I was so exhausted from the preceding years (which were similar to yours) that I needed full-time support, not just several times a day.
What I did during those last days was control the visitors and make food that she asked for but never ate. One nurse from the hospice told me to stop cooking because the food would be bad for her, but I kept on, knowing she wouldn't really eat it. I've since learnt that the sense of smell is one of the last things you loose and that she may have felt the smells of cooking were safe and homely in a good way. The visitors were all of our huge family, and some came with good intentions, some with less savory motives. I made sure everyone got their five minutes with her, but that the kind-hearted people got some more. Everyone got space and time to sit and talk with each other outside of her room.
There are things I regret. But after loosing a number of close and dear relatives over the last 15 years, I've also realized that you die as you live. My granddad was a warrior who refused to die, and he died fighting. It was painful and terrible to watch. My stepmother was the kindest and most generous person I've ever met, and she died at home surrounded by loved ones, after weeks of caring friends visiting and helping. My gran was a strict and lonely woman, and regardless of what I did to soften her last days because I loved her, her fraught relationships with other people formed the last days. I did sit alone with her during the last hours (actually most of the last week), doing what I could to make her feel safe letting go.
Good luck with it all. This will be hard, but it will pass. I'm sure you will miss her for ever, but I know from experience that doing the right thing, however hard it is, will help you through the hardest times. And you are already doing that.
posted by mumimor at 2:18 PM on July 22, 2018 [1 favorite]
I'm sorry I can't advise you specifically on issues in Australia. My father died recently in hospice care at his home in the US. He had cancer and an estimated life expectancy that made hospice a permissible choice. At the time of his diagnosis we heard that there were 2 pathways we could decide between because he, at 88 and diagnosed with advanced metastatic cancer, he chose not to pursue treatment.
Hospice focused only on symptoms and comfort. They would address issues arising only from cancer, including pain and personal hygiene. They had an in-patient hospice facility, but it was difficult to gain access and was mainly used for patients who were impossible to cope with at home or who could not stay in a nursing facility because they were unmanageable - think abusive, violent late-stage Alzheimers, or they were in such terrible pain that they needed IV pain medication. Home care did not allow any IV pain medications. In addition, they did not cover anything NOT RELATED to the cancer. Any other issues he had to pursue with other doctors at his own expense (not something it sounds like is an issue in your Australian health system). My dad got a urinary tract infection in hospice, but got antibiotics from them only because he had a catheter. (He had bladder cancer). Had he not needed a catheter, he would have needed to get treated by his own physician at his own expense.
There was another choice - Palliative care. The focus was divided because it was meant for people who were not necessarily going to die soon, and treatment of any medical issue was pursued according to the patient and family. So a sinus infection would be treated, for example. There was MUCH less support offered, but the purpose of palliative care is patient comfort, not anticipated decline and death. Severe RA with contractures would be in this category. They might start with an air-flow bed to prevent bedsores, for example. Pain control is manifestly their mission. This is often thought of as another word for hospice, but it actually is different.
If I were in your shoes I'd call the brightest and best doctors you know and ask them who they would recommend who focuses on palliative care. I'd then ask them to facilitate setting up an appointment for a conversation with one or more of these doctors and ask them what they would recommend. Follow up on those recommendations. You're in a situation where you know what your mother needs, but not how to get it to happen.
You have discovered that although kindness is important, it isn't everything. The nurses in your mother's facility may not have much experience with patients who are in as much chronic pain as your mother is, and they might be very happy to have someone with more experience intervene on her behalf.
And please be kind and understanding with yourself. Your mother's pain is not your fault. I'm an only child, too, and know how responsible I felt for his dying experience. You just lost your father and are grieving, too. Please accept my deep condolences and know that every effort, every frustration, every tear you shed, would make your mother proud.
posted by citygirl at 2:58 PM on July 22, 2018
Hospice focused only on symptoms and comfort. They would address issues arising only from cancer, including pain and personal hygiene. They had an in-patient hospice facility, but it was difficult to gain access and was mainly used for patients who were impossible to cope with at home or who could not stay in a nursing facility because they were unmanageable - think abusive, violent late-stage Alzheimers, or they were in such terrible pain that they needed IV pain medication. Home care did not allow any IV pain medications. In addition, they did not cover anything NOT RELATED to the cancer. Any other issues he had to pursue with other doctors at his own expense (not something it sounds like is an issue in your Australian health system). My dad got a urinary tract infection in hospice, but got antibiotics from them only because he had a catheter. (He had bladder cancer). Had he not needed a catheter, he would have needed to get treated by his own physician at his own expense.
There was another choice - Palliative care. The focus was divided because it was meant for people who were not necessarily going to die soon, and treatment of any medical issue was pursued according to the patient and family. So a sinus infection would be treated, for example. There was MUCH less support offered, but the purpose of palliative care is patient comfort, not anticipated decline and death. Severe RA with contractures would be in this category. They might start with an air-flow bed to prevent bedsores, for example. Pain control is manifestly their mission. This is often thought of as another word for hospice, but it actually is different.
If I were in your shoes I'd call the brightest and best doctors you know and ask them who they would recommend who focuses on palliative care. I'd then ask them to facilitate setting up an appointment for a conversation with one or more of these doctors and ask them what they would recommend. Follow up on those recommendations. You're in a situation where you know what your mother needs, but not how to get it to happen.
You have discovered that although kindness is important, it isn't everything. The nurses in your mother's facility may not have much experience with patients who are in as much chronic pain as your mother is, and they might be very happy to have someone with more experience intervene on her behalf.
And please be kind and understanding with yourself. Your mother's pain is not your fault. I'm an only child, too, and know how responsible I felt for his dying experience. You just lost your father and are grieving, too. Please accept my deep condolences and know that every effort, every frustration, every tear you shed, would make your mother proud.
posted by citygirl at 2:58 PM on July 22, 2018
I'm so glad you are getting to meet with a palliative specialist.
I'm not sure how things work in Australia, but here in the US I would specifically focus on treating the physical discomforts: what can we try to reduce pain and nausea? And if these things don't work, how can I follow up with you to get adequately treated? And what do I do if I encounter any resistance from the GP?
I would also ask for a referral to a social worker and if they have something like a nurse case manager. These are the folks who can help with strategizing about and possibly coaching the nursing home staff and other more social issues.
I would consider hospice as well. My mother is on hospice now and she gets much more attention - nurse visiting, a chaplain and social worker for my dad.
posted by latkes at 7:10 AM on July 23, 2018
I'm not sure how things work in Australia, but here in the US I would specifically focus on treating the physical discomforts: what can we try to reduce pain and nausea? And if these things don't work, how can I follow up with you to get adequately treated? And what do I do if I encounter any resistance from the GP?
I would also ask for a referral to a social worker and if they have something like a nurse case manager. These are the folks who can help with strategizing about and possibly coaching the nursing home staff and other more social issues.
I would consider hospice as well. My mother is on hospice now and she gets much more attention - nurse visiting, a chaplain and social worker for my dad.
posted by latkes at 7:10 AM on July 23, 2018
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posted by t0astie at 3:25 AM on July 22, 2018