My 88 year old mother is in Hospice care. She has been prescribed a pain medication. One side effect (said the Hospice Nurse) had caused my mother to feel that she is in more pain than she actually is (hallucination). She had gotten too much of the said pain medication built up into her system (not an actual overdose) and since then she has been in worst pain than before. The Hospice nurse since then prescribed a stronger long-lasting pain medication, a sedative, and another medication to perk her up during the day and continues using the same pain medication that caused her hallucination. I'm left with the impression that she may not be in as much pain as she thinks she is and the medications are causing her to be in a worse state than she actually is. Is it possible that they are mistaken and making her condition worse via the medications? Because a week and a half ago she was able to use her commode with assistance. Now she cannot bare being turned in bed. Before she could have a coherent conversation. Now she is in a dream-like state and muttering. I can only imagine that the only way to find out what her real status is is to find another medical program that would reevaluate her condition. This would be difficult to do wouldn't it? Or are they doing the right thing? Or perhaps I am not willing to admit to myself that my mother is dying and there is nothing that can be done about it? Also, it is hard for me to believe/understand that her condition is deteriorating this rapidly. ***I did not know if it was necessary/appropriate to include specific details of mother's illness and medications being administered.
You shouldn't post any information that would *identify* your mother, but it's fine to be specific (as specific as you're comfortable with, anyway) about her illness and treatment.
My mom was on hospice at her NH. Hospice coming in 3 days a week type of situation & augmenting the care already provided by the NH. Very different Hospice than the in unit experience with MIL. Mom on Hospice 18 long, long months; MIL 3 weeks. Very different paths to death. Hospice is an amazing resource for the patient and thier family. If this is Medicare benefit Hospice, bereavement counseling is available for you later on should you want it.
Last November I found my mother in a non-responsive state. Turned out to be due to a blood infection. She was treated for that, but they also stated that another blood infection could easily recur. They also checked on her cancer at that time: bone and liver: metastatic. A year lapsed since her last tests. I don't know off hand what stage (I will have to ask my brother) but the doctor gave her 6 months and recommended Hospice. Her second mastectomy was 4 years ago. And one year ago they asked to do a biopsy to check a suspicious 'spot' inside her left rib cage. She refused. I don't fully know why, but the last procedure left her in chronic pain and I believe she has just had enough. She has refused other treatments in the past as well, for instance, a knee replacement which has a long painful healing process.
Presently she is on two pain meds, Dilaudid and Methadone (the Dilaudid is what caused the hallucination/s). And intermittently given Lorazepam for anxiety. And Dexamethasone to perk her up during the day (which isn't working). There are a few other meds that are not used regularly except sleeping pills. They are only keeping her comfortable.
Before November last year she was only taking Hydrocodone for pain.
I am confused about her condition: I do not know the cause of the blood infection and it was the blood infection that brought her in to emergency rather than the cancer; they checked on her cancer while they were awaiting the blood test results. She was returned home and in Hospice care before they knew about the blood infection. Leaves me to wonder what is really wrong and if she is really in need of Hospice care at the moment and all these strong pain medications. I would like to see her off those pain meds to see if she might become coherent again.
BTW, this is an inquiry. I am only voicing my concerns. I understand that her condition is complex and not as cut-and-dry as I as I am stating. I do trust the doctor's and Hospice, but at the same time these institutions do make mistakes.
[My last post I had created paragraphs. After posting everything was consolidated. I hope that does not happen again. Sorry if it does.]
My mother at this time is in her home and both my brother and me are on duty caring for her around the clock (12 hour shifts). Hospice has voiced their concern that we may not last much longer (let alone 6 months - her life expectancy). We are presently considering options. But I had always imagined mother remaining at home but I no longer know what would be best for her. I know she hates hospitals and may suffer in a convalescent home. Foster Care may be better where it is more like a home environment.
Anyway, thanks for your time, insights and sharing your story. I do really appreciate it.
Sincerely, Mwb
I have been told that when cancer matastesjzes to the bones, the pain is awful but I have no direct experience. I'll let others weigh in.
I'm so sorry that your family is going through this.
If you and your brother don't have confidence in yours, speak to hospice and ask for someone to visit or at least call you to go through any questions you have. Make a list of questions, if you like. Don't hesitate - you're not complaining or arguing, you're just asking perfectly reasonable questions and you have every right to considered answers.
" do you think that there might be a combination of pain meds that would allow mom to be comfortable AND coherent, or is her disease so advanced that we can no longer hope for an alert state? ".
" Is this the right combination of meds? If Dilaudid is causing hallucinations of worse pain, should we consider weaning her off that and using something different?"
I understand the sort of incoherence that comes with watching a loved one die. I was mostly mute with dread, watching my mom in hospice, except for wanting to strangle my SIL, who is sweet and wonderful, when she'd ask what I thought of as bizarre questions of the nurses. It's not easy, and I had complete confidence in what the nurses were doing. Please try asking your questions. You have a right to be without doubts.
Your description of your mother's symptoms do suggest that she is approaching the end of her life.
At this time i would her to eat or drink very little and sleep most of the time.
Bone cancer is very very painful and any movement is very uncomfortable. If you can give a dose of medication half an hour before moving her.
Methadone dosage is very difficult to get right which is why liquid morphine is usually used in combination with a long acting narcotic.
Dilaudid is a good pain reliever but not often used these days. My personal choice and I emphases personal would be a fentynal Patch and Roxanne (liquid morphine) for breakthrough pain. It itially fentynal patches take about 24 hours to start working and they are changed every72 hours so there is no break in pain relief. There are chart for calculating doses based on previous use of similar meds.
Would you rather that mom was sleepy and pain free most of the time rather than being kept awake with an amphetamine?
You have every right to refuse any drugs or treatment you feel is not helping Mom.
I would address these concerns with the Hospice staff first thing tomorrow morning when all the proper people are available.
You have two of you providing care so you should be able to manage this care Many people do it alone which is too much. Hospice should be sending someone in 2-3 times a week or more often to assist with things like bathing. make sure you both have somewhere quite to sleep during your down time.
If all else fails change Hospice providers if there is a choice in your area.
From what you describe, she knew she was in pain and was slipping away. I'd do what Barb & Veronica suggests above and make her as comfortable as possible on her journey. Hugs.
About me (brief): This has been a crash course for me. I did not see this coming. I had thought she would be around another 5-10 years. All this is new, and came on very fast without due notice. My query obviously proves my naivety. I have never been this close to a person in this condition. Three previous deaths in the family were distant: two died after procedures (father and step-father), and one family member was in another state. I've never been in a Hospice situation until now. My mind is still in the groove of assisting a sick person to become well again. So, thank you all for your inputs.
I had already reported to our Social worker about the day nurse. And my brother asked yesterday and found out it is not a problem to change nurses - we are about to do so.
"Your description of your mother's symptoms do suggest that she is approaching the end of her life.
At this time i would her to eat or drink very little and sleep most of the time."
This was helpful to here from another source. And she has already cut way back on her own both food and water.
"Dilaudid is a good pain reliever but not often used these days. My personal choice and I emphases personal would be a fentynal Patch and Roxanne (liquid morphine) for breakthrough pain."
Igloo mentioned Fentynal also. I'll ask about this. We have Roxinol but they are not using it as a base.
"Would you rather that mom was sleepy and pain free most of the time rather than being kept awake with an amphetamine?"
I don't know. They gave her Dexamethasone to 'perk her up.' What happened was she remained in a half-wake half-sleep state and she sounded like she was talking in her sleep. We stopped using it immediately thereafter. Now she is sleepy and mostly pain free.
"You have two of you providing care so you should be able to manage this care Many people do it alone which is too much."
We are on 12 hour shifts, no days off. So far we are okay. But, Hospice is suggesting we either move her out to a Convalescence Home (I prefer Foster Home Care); they don't think we can maintain ourselves over the next several months. What we want is to keep her in her home (where she is most comfortable) and hire additional help, even a live-in. We are looking into this.
"drs overestimate a life expectancy by serious amounts - doubling or tripling it would be completely normal. They don't want to give up hope because they see death as their own defeat."
This was very comforting. And YES, last year before her blood infection she had mentioned twice about remembering her - she handed me a picture to remember her by. I put it aside because I didn't have a clue then. We are trying our best to make her comfortable.
We have asked about replacing this nurse. They said it is not uncommon and not a problem.
"I understand the sort of incoherence that comes with watching a loved one die. I was mostly mute with dread, watching my mom in hospice...."
YES! Sometimes I cannot move. And she is suddenly not-there. A week ago she would smile and wave, or ask to use the commode. This is one wild ride.
"Please try asking your questions. You have a right to be without doubts."
I will.
And yes, we have heard the same about how painful the bone cancer is. We just don't understand the sudden shift in her health. Last summer she would walk by herself with cane or walker. Go out on drives, some shopping, etc. And then, almost suddenly, she is bedridden and semi-conscious. This may take a year or two to process.
"If you and your brother don't have confidence in yours, speak to hospice and ask for someone to visit or at least call you to go through any questions you have."
More than anything it is her age. We are approximately 20 years older. She has been a hospice nurse for 5 years. Appears to know her stuff very well.
In addition, hospice sees that people are surprised by their parent's death almost always. It's going to be harder on you to go into your living room, bedroom, etc and see the place where mom died. That would be really hard if she'd suddenly had a heart attack, but this would be harder. If she suffers pain there, you are most likely going to remember that instead of all the good times you've had in that room with her. Hospice is about the whole family.
It's all about your mom's comfort now and protecting your memories of her. The end could be 6 mos, but it is highly unlikely. It could be a month or two that we are talking about. If your mom has declined so quickly from the pain meds, she is not going to be aware of where she is. Of course, in her right mind she would prefer to be at home where she knew where everything was and what to expect. But under the influence of severe pain and hearty doses of pain meds, she's not going to be aware of anything but pain or lack thereof. I think she would agree that you should rest now so that you can fully appreciate these last moments with her and talk her through the transition. That may well involve outside help in the form of the CH. Hospice has been through this before, while for most of us, it's our first rodeo, and one we wish we could miss.
I’m in New Orleans & there has been multiple hold ups and thefts from Hospice staff & those on Hospice as there is a huge market for opioids. Add that Fentanyl kinda has to be handled carefully (its readily absorbed, even its packaging has to be carefully discarded), so Hospice can decide a Fentanyl patch or lollipops or other excellent pain blocking sublinguals like Buphrenophine (Roxanne makes this) is too risky to leave for family to do so those meds get limited to in unit facility type of Hospice. So the at home patient gets other meds instead that are good but perhaps not quite a quick or deep. You get my drift?
Hospice as a Medicare benefit is self directed, which means mom (you as dpoa) can select the vendor. Like if your on Medicare you can select the MD as long as they take Medicare and have room for another Medicare patient in thier practice. If you want to totally change Hospice groups you can. I did for my mom and did it within the first 90 day initial period. Mom fell at her NH shattered a hip and bedfast from then on. First Hospice did Minimal and was pretty lax on communication with me (I live in another state). My take was that they assumed mom would die within days; I saw her couple days after the fall and knew that wasn’t happening as she asked me to get her a sandwich..... Anyways around week 5 I got names of other Hospice that went to moms NH and contacted them and picked one that had iPhone & Skype option for contact as well as email. New Hospice did the paperwork to transfer Medicaid coverage which I had to sign and we timed the switch to co-inside with mom’s next 90 day care plan meeting. Mom was on hospice 18 months so for us having Hospice that you get along with was very important. They do become an extended part of your family. The NH loved having Hospice as it’s extra hands to help (at no cost to the NH) especially for bathing, plus speciality equipment brought in (pneumatic bed, Geri bathing & regular chairs, fall monitor) and order other items, like Twin Cal liquid nutrition designed for bedfast tummy and disposable feeding bibs. Hospice is really an amazing system.
Realize though if your dear mom should need to move into a hospice in a facility, that Medicare will pay the direct Hospice part BUT the daily room & board costs are not covered by Medicare. R&B is private pay or Medicaid. A purely in-unit Hospice (as opposed to a traditional NH) could have the daily R&B less than a NH as so much is directly billable to Medicare. Please try to find this out so no surprises added upon all the other items you must juggle.
Remember to take time for yourself too.
Fentynal however only has to be changed every 72 hours so a Hospice nurse can deliver and apply the patch each time. Hopefully in a high crime area a guard is provided for nurses making visits.
Fentynal is absorbed through fat and is therefor applied to a fatty area of the body such as the upper arms or high chest above the breasts. Family members are able to manage this once instructed and as long as they don't have skin contact with the patch (either wear gloves or wash ands after touching there should be no danger to the caregiver of accidentally absorbing the medication. Roxanol is primarily used as a breakthrough medication when a patch is used. Hospice takes note of the amount of Raxanol used during the 72 hours and uses this to calculate any increase needed for the fentynal. On first application a fentynal patch takes up to 24 hours to become effective but after that if they are changed on schedule there is continuity of relief.
Well, we changed nurses, the new one starts tomorrow. We will see how this goes for now. So far the Hospice crew has been very good. I appreciate your insights in the event that we do have to change services.
Thank you everyone!
Our hospice team is very good. Our new nurse is superior. The Hospice Chaplain paid a surprise visit the other day since he was in the area - yes different traditions but supportive all the same. Mother is bathed twice a week. Physical Therapist upon request. They offer 4 hour sit-in's to relieve us, but we are on a waiting list. Initially they gave us two booklet's titled: Gone from my Sight and The Eleventh Hour by Barbra Karnes, RN. They are both comforting and insightful.
Thank you very much for your responses. It's very helpful right now - comforting.