After the fall(1)

Jane Smith

Hi all, and hope you are as well as is possible.

I’m sorry to say that my mother fell on April 17 and fractured her hip. We will not pursue surgery and she is now bed bound. Due to the pain it causes, they cannot get her out of bed and only move her as is needed for care/hygiene.  Obviously it’s been very stressful and I am just now checking in here. 

For background, my mother is in later stage dementia (probably Alzheimer’s?) and before this fall was completely ambulatory. She is still surprisingly verbal. She is in a memory cafe unit at a facility near me. She has been on hospice since May 2020.  She had Covid last August when her facility had an outbreak.  She lost a lot of weight with Covid but otherwise recovered well. She started losing weight and falling more the past few months.  I knew eventually she would sustain an injury from a fall, and well, here we are. 

She has lived at her facility for six years and I could not ask for better care or kinder staff.  Hospice has also been useful.

She already had a hospital bed and now has an alternating air pressure mattress thingy.  She is on morphine for the pain, as well as Tylenol with codeine and/or ibuprofen. We have discontinued most of her other meds; there are a couple that we are tapering down.  Her wonderful, amazing, superb neurologist has had to discharge her from his care, but made it clear I am to call him anytime for advice or just to talk.  

She is eating (being fed, which is another story), and drinking.  We placed a Foley catheter as she suddenly became unable to void her bladder, which apparently can cause a lot of discomfort and distress.  A catheter comes with risks and is invasive, but I felt it was more important to relieve her discomfort. 

I have now gone from seeing her in person only once since March 7, 2020, to seeing her nearly every day.  The facility had just opened up for scheduled half hour visits on a limited basis, but immediately allowed me into the building (with no restrictions on length of visit, bless them) and I now have special dispensation to visit any time day or night, as often as I wish, for as long as I wish, and can even stay there if I want to.

So, not actively dying, but suddenly so much closer. 

The pamphlets and such that hospice have provided me are incredibly vague and insultingly devoid of actual medical information. I have not wanted to fall down an Internet black hole, so please, can anyone point me towards some specific and medical information about not just actively dying and actual end-of-life, but whatever it is you call what she’s doing now?

Any assistance would be gratefully appreciated. 

Thank you all for listening. 

(Also, please feel free to ask questions or for clarification.  I’m exhausted and my brain is a sieve so I have no doubt left out important information-inadvertently, I assure you!)

Iris L.

"Hard Choices for Loving People" is a book you can purchase and is also available in pdf online.  You will have to search for it.  It may answer some questions.  Also, there are several threads on the main Caregiver board about late stage PWDs and hip fractures.

Iris

M1

So sorry Jane. This happened to Licketys mother recently, you may want to find her posts. You were absolutely right about the catheter, she needs it now. I hope she's not in too much pain.  No one can give you a precise timeline, but I would be surprised if she lingers very long.  Wishing you well.

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zauberflote

Jane, I am so sorry you've had to face the choice you have. We faced the exact same situation with our mom, 8 months before she died at 92. Her femur neck sheared, causing her to fall. The "gentle giant" aide carried her back to her bed, beginning the process of displacement of the fracture which led to her being a poor candidate for pinning. We elected the opposite course of action to yours, and went with partial replacement. She was "out", blessedly on pain meds (demerol?), and both our hospice and the hospital staff helped us work through our choices. We decided that Mom would be (or would have been, as her pre-dementia self) comfortable with the risk of not making it through surgery. She ultimately healed and recovered very well, but a week in the hospital does dementia no favors. 

When it came to her last weeks, she was wheelchair-bound, probably mostly being fed and definitely enjoying her food and drink, but otherwise really frail, mostly zoned out/in another world, but responsive appropriately, with normal vitals per hospice. Then one day she seemed to have a stroke, then she either aspirated food or caught a bug (Mid-Feb 2020 so Covid was around but it wasn't that), and in the space of a few days (not including any active dying...) was gone, surprising hospice, staff, and us by her sudden departure. She had this horrendous deep barking cough, which was calmed by the hospice morphine+ativan, and spent her time sleeping or "speaking" to her memories. We didn't force food or drink, and she didn't ask. After a few days/nights of that, with her body functions clearly shutting down, she left one noontime between half-hourly bed checks. 

A friend's mother followed the same course as yours after a fall that did not damage her, but took away her ability to know what legs are for. She lasted about 2 weeks. She was 96. 

A third person to report on is the woman in the room next to Mom's. She was bedbound with only trips to the dining room when Mom moved in, lost the ability to be transferred to a wheelchair and was offered food/drink in bed, and my impression was that after a time she didn't care to eat, and that she slept non-stop for several months before passing. I never knew her age, but she was very frail and could have been 85 or 105 (somebody there was!).

I think the reason the Barbara Karnes-authored hospice booklets we had are so sparse with specific medical details is at least two-fold. One, bluntly put, is the author writes for the lowest common denominator of caregivers. The second is that dementia persons who are dying don't usually write their memoir of how they died. A possible third reason is that our hospice nurses know what there is to be known, and a good one will be open to discussion on the medical aspects of dying. 

That Hank Dunn book is worth its weight in gold. Very easy read, and worth re-reading. Another, Being Mortal by Atul Gawande (a physician whose father seemed to be living forever) is longer, but very very engaging. 

This is a difficult time. Take what rest you can, and keep us posted. 

Jane Smith

Thank you all for your kind replies and great suggestions and advice. 

I’ll try to reply more personally later but am exhausted after work, errands, visiting my mother and whatever else I did today.

I do have a copy of the Hank Dunn book and on your advice, dug it out and dusted it off. I remember it being approachable for me when I read it some time ago.  That is a very good suggestion. 

She seemed stable again this evening. Like Sunday, she was very chatty, not agitated, and no signs of pain or discomfort I could discern. I’ll take it. 

Thank you all so much. 

Jane Smith

Hello all, and thank you again for reading. 

It’s been another long day and I’m tired but have an update, and some questions.

Yesterday I told hospice and the facility that I want them to stop hand feeding her three meals a day. We had already stopped her Ensure supplements. I am sorry to say that hospice has not followed up with me about this, but I have had plenty of conversation with the facility about this. Their policy is that they cannot “withhold” food from a resident, but they will allow what they call “comfort feeding,” where food is available and offered, and if food is declined or she seems uninterested, they will give her something like ice cream or pudding rather than whatever is on offer in the dining room.

She is still drinking;the morphine definitely gives her a dry mouth and possibly also thirst. (If the hospice nurse would talk to me more I might know!)

I am also unhappy to report that she has her first pressure sore.  I did not know it could happen so fast. I am further unhappy that when I went to the facility today, the nurse manager said, hospice nurse said she would call you yesterday about your mom’s wound, and of course guess what?  I know it makes no difference but I was irritated.( I hope it wasn’t the hospice nurse deliberately withholding information because she disagrees with my decision about stopping feeding?  Surely she would not be so unprofessional.  I am hoping she was just busy.  I should not spend time theorizing in advance of the facts.)

I’m exhausted.  It was a long day (doctor’s appointment, accountant appointment for my mother’s taxes, bank, grocery, haircut, meeting the music therapist at the facility and visiting my mother, a phone call with my therapist and phone calls with two family members). Work tomorrow will be restful by comparison!

Thanks for listening

King Boo

Hi Jane,

This is a most difficult period you are going through.  I remember feeling like I was in suspended animation - moving forward with 'best as can be' decision making all within the framework of comfort care and hospice.   And spending some energy wishing it were all over. 

When time was up, things go quickly.  

I have no experience with palliative care of a hip fracture so I will leave that to others to address.  We had two separate hip fractures during our dementia journey but they occured more mid-stage and had surgical intervention.

It is not realistic to ask hospice to withold hand feeding.  Hospice will not do this.   The fact that Mom is still stimulable for some limited oral intake is an indicator that she is still capable of eating even if she has lost the motor coordination to self feed.  

Perhaps if you realize that hospice directives go very much with the patient's flow it will help.  That is, regular care staff must be educated not for force food on a patient.   Signs of this include pocketing food in the cheek, or holding food in the mouth without a swallow.  If food is introduced and the patient stimulable to swallow, assisted feeding is still indicated.  A patient should not have food put in their mouth if they are not awake.   

I would make sure regular care staff has this information to offer food, monitor what is done.  My regular care staff for my LO tended to get hysterical when his intake was down (they form attachments too).  I had the hospice nurse speak with the main caregivers so they could identify a productive offering of food which was swallowed, vs. unproductive feeding.

Don't discount the comfort and enjoyment of food, it is still possible.  My LO was clearly about to begin active dying but the day before ate a whole lot of Yoplait yogurt and his favorite flavor of chocolate ice cream.  And wanted more!

As to bedsores and skin breakdown - for the hospice patient, this most likely reflects the physiological shut down of the body and they occur very, very easily.  It's not something that staff could have prevented, most likely.  At this point, it's probably about managing it rather than curing it. I don't know if hospice can consult with a wound care nurse or if it is in their scope of practice.  Certainly wound care can be palliative, you don't want it to progress any more than it has to.  You can ask if this is an indicator of the time your Mom has left; if I remember correctly, there is a particularly high incidence of skin breakdown in the final weeks.  

Your description of hospice literature struck a chord.  I remember feeling somewhat similar.  After years and years of researching best clinical/medical practices for my LO - the hospice information seemed very, very basic.  Especially for clinical me.

But in retrospect, it was really adequate.  For the time to learn about how dying happens, what the changes in my family member meant and most importantly for me to expect it so I wasn't frightened and could gracefully accompany my LO in their final days - well, the gooney, ridiculously skinny pamphlets - had the simplified focus of what was needed.

I am sorry, these are difficult days.  Try and just 'be' in the moment, as much as possible.  There's a lot of pain, but a lot of healing that can come forth from this in the future.

M1

Hi Jane. What a day. Yes, morphine and all narcotics can cause dry mouth-and bad constipation. Sorry about the bedsore, but I agree it was unavoidable-they can't reposition her because of the fracture.  

Sounds to me that you are at the point for very simple focus, where her comfort is all that matters. Is she comfortable becomes the only relevant question.  

Glad you posted. Hope tomorrow is more manageable.

JJAz

Jane,

Make sure that they are turning your Mom every 2 hours, even with the inflating mattress.  It's difficult with a hip fracture, but the skin needs to breathe.  Keep in mind that if you're dissatisfied with Hospice, you are allowed to bring in a different Hospice company.  I believe you're allowed two companies per approved period of time.  All Hospice is not created equal.

Blessings,

Jamie

Jane Smith

Thank you all for reading and posting. Jamie, m1, king boo, Iris, Victoria, Zauberflote, anyone I missed out there, plus everyone reading, please know you’re appreciated. 

There is so much good information here on the boards. Thank you. I am definitely posting to vent and to get advice and support, but also in the hopes that someone else might benefit from something I post. 

I think most of my frustration with hospice is not at all about the care, but about the communication, administrative stuff, and staff turnover.  I realize the latter is unavoidable, especially with staffing issues related to Covid.

Thankfully I am very happy with her current hospice nurse (T), even if her texting style took some adjusting on my part. I can work with her. 

The music therapist (C), who is also the grief coordinator, has been extra helpful and supportive ever since the beginning and there was only one unhappy interaction with her, which unfortunately was Thursday of this week, and I will write about it later.   King Boo, it was about those wretched pamphlets!!  (Incidentally, or actually not incidentally, your response to me about that was most helpful and I am grateful and will try to find time to write more about it.)

The social worker, H, is brand new and the third or maybe fourth social worker assigned to my mother. I lost count. I would categorize all of them as useless at best and upsetting and intrusive/obstructive at worst.  The hospice nurse has had to do several things the social worker should have taken care of, but did not.

The chaplain they assigned, Pastor K, is complicated. I don’t have time for complicated. I had a couple of phone calls with him early on and at first he seemed pretty good but I soon realized that talking to him made me tired, made me feel like I could not be honest, and frankly, I did not like hearing about his amateur acting career, the book he is writing, or a bunch of other stuff.  In some of his personal comments to and about me, he was just barely this side of patronizing/inappropriate/something, although it’s clear to me that he did not intend that and I’m sure thought he was complimenting me.  I eventually asked that he not call me again but he continued to call. I do not answer or return his calls or listen to his voicemails. Last week he was in the building when I was there with my mother and he knocked on the door, opened it, and talked to me, although he stayed in the doorway. I was much too tired, upset, and worried about my mom to throw him out.  I was also raised to be polite (by that woman dying in that bed right there) and it’s hard for me to be direct sometimes. I did not stand up and I said the barest minimum of words and he eventually stopped talking and left, but not before he told me how good my mother looked and well she was recovering. Oy vey, and uff da, as they say. Hospice nurse T has reassured me that won’t happen again. It’s fine for him to visit my mother but I do not wish to talk to him. I’ve asked several times for another pastor/chaplain and finally got annoyed and called one myself!  (A pastor who used to be the hospice chaplain in her building and did the Sunday services and she responded to him very well.)

So that kind of stuff makes me crazy. (Don’t get me started on the district nurse manager with the worst phone manner ever who doesn’t return phone calls, or the hospice nurse who argued with the doctor about medications!, or the person who got my mom’s name wrong on the paperwork  when she went on service and they all called her by the wrong name and then tried to tell me they didn’t mess up, or whoever didn’t fix the billing and she was paying for her own hospice supplies for months.  After she is dead I intend to have a conversation with them about all of this.)

But Hospice Nurse T is very good, and backup hospice nurse J is even better (and I know him because he used to work at the facility and was even the unit manager, before he switched to hospice, and my mom loves him), and the aides are delightful and so kind. And all the facility staff is great. So I am not worried about her care at all. 

So she is eating when she is hungry and not eating when she is not. She is drinking a fair amount of fluids. 

I talked about the feeding here because it’s not something I hear about much and I want others to be aware.  If it had been solely up to me we would have made some changes sooner with feeding, but in a facility in this state and with this company, that’s not something I have absolute control over, although they are working with me.  

Mostly I did not want her to be woken up for meals, offered food she clearly does not want (she can communicate that still), or forced in any way to eat. She can chew and swallow with no issues at this point. Basically I would like her to be offered more foods that she likes or expresses pleasure with, like ice cream and cake and carrots and the filling from chicken pot pie, and not so much, come on, eat the hot dog and the cauliflower and the bread. 

Some days she eats well and other times, just a bite.  That is okay by me. 

So much more to say but I must go!  Thank you all again so much

Jane Smith

Oops before I forget

Jamie:  they are doing their absolute best to reposition her as much as possible as often as possible. Fully turning her every two hours is not working due to the pain and also fear and agitation it causes.   Lying on her back is the only position she will tolerate, unfortunately.  They are as gentle as possible for hygiene/personal care and any repositioning.  If anyone has ideas, I’ll take them!

She also on Wednesday developed the first noticed sign of a pressure sore on her coccyx. It’s too soon to tell but hospice nurse T thinks it’s a Kennedy Terminal Ulcer. I had to read up on that. In this case, terminal means that it happens because she’s dying. (Similar to end stage terminal patients not dying because they stop eating and drinking, but rather, they stop eating and drinking because they are dying.) I found some excellent articles I can post links to.  

Other pressure sores are maybe preventable and they have the special soft bootie things for her feet.

I can deal with the stupid administrative issues and even the pastor, because i honestly feel good about her hospice care team. Believe me, if I had one iota of doubt about their competence, they would be out. I also trust the unit nurse manager because she keeps a very, very close eye on everyone in her unit and she will tell me if there’s a problem. 

Must run. Thank you. 

JJAz

Jane,

I'm so sorry that all of this is happening to your Mom.  You seem like such a loving and caring daughter.  Your Mom is lucky to have you.

Blessings,

Jamie

Jane Smith

Thank you for the kind words and keeping us in your thoughts. 

It is not an easy time.

Jane Smith

Today was hard. She was in a lot of pain while I was there.  But before I arrived she had a visit from the pastor I called (not the assigned one from hospice) and according to both the pastor and the charge nurse, she seemed delighted to see him. So I do feel positive and relieved about that.

She did eat a little bit of the chocolate ice cream I took her. 

Tomorrow I will have a long day at work (we have a person out of the office and a full schedule) so won’t be able to visit until evening. 

Tuesday is her birthday.

Jane Smith

Today is my mother’s birthday. The staff had taken extra trouble to dress her in a real shirt instead of a hospital gown and brush her hair.  There were balloons in her room, a sign on her door, I took flowers, the hospice nurse took her a cake yesterday, and the chef made her a special dinner. I also took in cake (a LOT of cake so the staff would be able to have some also). And there was a lovely gift, from the executive director. These are good peoples who care about her and I am grateful. 

The staff told me that my mother was hungry this morning and ate breakfast, but refused any lunch, and had been sleeping all afternoon. She was asleep most of the time I was there, and when she did wake, she was not talkative. Which is fine, as she was also not in pain or distress. 

So on the one hand it’s as good as it can be, and I have good memories of livelier birthday celebrations at her facility. 

On the other hand, today is her last birthday, and that is…strange? Uncomfortable? Something.

King Boo

You are doing well to take things day by day, and Mom's last birthday did not go unrecognized by her caregivers.  Deep attachments can be formed by regular care staff, some of whom do not necessarily approve of hospice.  I mention this only because if you encounter it at a vulnerable moment, it can be upsetting.  Stay the course, and recognize it for what it is.  

Someday soon, things will shift from day by day, to moment by moment.  And you will take a deep breath and continue to do what you are doing well, to process and experience what is immediately at hand.

You do your mother proud both by being polite to the less than ideal minister, and by advocating for the chaplain who is a good fit.  Just because someone is a religious does not exempt them from a lack of sensitivity, or odd personality.  People can be doozeys in all professions.

Has the hospice nurse prepared you about what the final days and hours may be like?  Knowledge in advance can help a lot.  The breathing changes can be noisy and frightening, but knowing why it is happening helps.  At some point, in the very long vigil, I marveled at the wonderful function of the body.  And the methodical way it stopped working.  At least, before it all hit me.

Practical matters abound too.  If you are able to determine who you will call after Mom dies to transport her body, it is good to have this information in her medical chart, as it is most helpful to have the unit clerk call.  I would suggest packing a little overnight bag for yourself, perhaps with a toothbrush, snack, glasses, contact case, change of comfy clothes, perhaps a fleece blanket and pillow.  They may have food on the unit for you.  I am not proud of the stress eating I did at bedside, and went through tuna salad, a piece of chocolate cake and some hard boiled eggs.  Odd that I remember that.

Do your best to keep your sleep intact, it is a pillar of health and of coping.  Thanks for stopping back with your update.

Jane Smith

You know the thing that happens when you type out a post and then it disappears?  That’ll teach me to save my work!

I visited today while the hospice nurse and the wound care nurse changed her dressing and checked her wound. Surprisingly, it’s good news:  what was almost certainly a Kennedy ulcer last week, is now healing.  I admit I was not expecting that!  I am very glad because it means less pain for her, and eventually less upsetting wound care. She was adequately medicated before they moved her to check the wound, and while she didn’t like it, it was not nearly as distressing as a repositioning when she is not medicated.  Not even close.  Yay for morphine.

With the exception of the dressing change, she was asleep the entire time I visited today. We will see what the next visit brings. 

I have much more to report but am going to break this up into multiple posts. Please know I appreciate all of you, very much.

Jane Smith

So the update on hospice pastor K, the one who could not take either a hint or a direct order to leave me alone?  He called me again this week, after being told by hospice not to contact me.  I did not answer his call or listen to his voicemail and immediately texted my mom’s hospice nurse, who immediately contacted her supervisor. 

I also blocked him on my phone (which did not occur to me sooner).

So that should be an end of it. I have also made a second formal request to speak to another one of the hospice chaplains, but of course have not heard anything back about that.  I am just trying to make sure my mother gets the spiritual care she needs/what I think she would want, to the best of my ability. (She was very private about her faith so I don’t have a lot to work with and have to follow my gut instincts, pieced together with the little information I do have.)

It’s just so frustrating to me that they do not listen to my requests.

I am also one hundred percent sure that if Pastor K does contact me again, he is going to get an earful from my husband and/or best friend.  I would not wish that on anyone so hope he honors my no contact request.  It does not seem unreasonable or unclear:  please do not call me. 

Next up:  those pamphlets.

Jane Smith

Again, thank you all for reading. 

An especial thanks to all who have listened to my venting about the information, or lack of, provided to me by hospice about end of life and dying. 

King Boo, thank you for your kind words. In a calmer moment I had another look at The Wretched Pamplets from hospice and yes, I can see that some of them are/will definitely be helpful to me, especially some of the anecdotes, and emotional/psychological/philosophical/spiritual/what have you sections. 

No, I have not been provided with any detailed or clear information about the changes that happen at the end of life, both before and during active dying, and also after death.  I have asked for this and will continue to ask. Unfortunately I think the best information is not going to come from the hospice social workers or bereavement/grief counselors; they just tell me to “talk to the nurse.”  I am perfectly comfortable talking to hospice nurse T and she absolutely listens and answers all my questions. The unit nurse manager, the floor nurses, one hospice aide, and some of the more experienced facility aides, do as well. 

BUT they have other patients to see and other work to do and are not at my beck and call. I specifically asked for some information in writing so that when I am upset/having questions at a time when it’s not okay to ask facility staff or hospice, I have documentation to refer to.  I do know I can google this but don’t want to go down that rabbit/black hole, especially when I am already upset. 

So last week I finally met C in person. C is the music therapist and bereavement coordinator assigned to my mother’s case. She has done an exceptional job during the pandemic to stay in touch with me and provide support. Until last week.

The music therapy session was wonderful and clearly was beneficial to my mother, and was very emotional in a positive way for me. Then C asked me if had received The Pamphlets. I responded yes, and that they were okay as far as they went, but that I wanted more detail about physical changes at end of life and active dying. C asked me to elaborate and I did.  (One of The Pamphlets says, “you may notice physical changes in your loved one” and that’s not exactly specific.)  C asked if I was comfortable talking to hospice nurse T and I said yes, but as noted above, I would like more information. Again, I was told to talk to the nurse. 

Then I said, look, C, I cannot possibly be the first person to ask for this information.

And C looked me straight in the eyes and said, actually, yes you are.

I then replied that that made me feel sad and lonely. C tried to reassure me that I was not alone, that C and the hospice team are there for me.  I asked, well, what happens if my mother dies in the next two weeks-C had just informed me that “due to a schedule problem” that they would be on vacation the next two weeks. So what happens if she dies while you are on vacation? I asked. C replied that another person from hospice would be available, but did not tell me who that is or how to reach them. I was still reeling from the other comment and did not think to ask. (I do now have that information-one of the other music therapists emailed me. I also know that C is in Florida and I am sure that’s very nice for C.  I realize I’m being petty and snarky but I am only human.)

I came home and over dinner with my husband, told him all of this. He asked how I felt, and I told him that being told by C that no one had ever asked for information about physical changes during dying made me feel like a freak, and then I cried a lot.  I ruminated about it for about three days.

Today I had a session with my therapist, who felt that C’s response to me was unhelpful at best and unprofessional at worst. (There is actually more to the story but I cannot go into it all right now.). My therapist also said that many family/friends/caregivers DO in fact want information about the dying process, with or without dementia, and that I am certainly not alone or a freak or anything like that. Further, my therapist teaches classes to social work students at a nearby university and specifically instructs them on this exact topic. She’s sending me her lecture notes and some other resources. 

So please don’t let anyone make you feel the way I felt last week about this!  It’s taken me an entire week to work up to posting about it. 

Thank you all for listening. 

Also the suggestion to pack an overnight bag is an excellent one and I will do that. The staff have told me multiple times they can accommodate me, if I wish to stay overnight. 

And yes, we are working on what to do when she dies. I will feel better when that is in place and it’s a good reminder. Thank you.

dayn2nite2

I think you're making things more complicated than they need to be.  Google "physical changes during active dying" and you will find dozens of lists of the changes.

But not everything on the list will apply to your mother.  Each dying person has different signs.  It may be that your mother doesn't show 50% of the signs (mine didn't).  She may show signs that aren't on any list.

I googled while my mother was in the active dying phase.  Most of what they said would happen didn't and while she lingered for 3 days unconscious, the dying part took about 3 or 4 minutes.  It happens when it happens.

M1

Glad she's relatively comfortable Jane. The sleeping a lot may be the start of transitioning, it's kind of hard to know. Not sure what you're looking for, but my experience is that there may not be clear cut things to look for, and that may be why it seems that no one is answering your questions. At some point, she'll stop taking fluids and food and will probably just sleep more and more. At the very end, of course, her breathing may become irregular (there's a pattern called Cheyne-Stokes respiration that's pretty common). 

So many fewer folks die at home now compared to past generations, none of us are as familiar with what happens. Not everyone is comfortable witnessing death, and that's okay too.  I'm glad hospice is on board despite the one chaplain. Thanks for taking the time to update, thinking of you.

Jane Smith

Hi everyone, and hope you’re hanging in there. 

I have been wanting to update but have been so, so busy and so, so tired and SO overwhelmed. (And my mother is in a facility and I only work four days a week and I don’t have kids-how on earth do those of you with someone at home and full time jobs and kids and other people to care for manage??  I am in awe of you.)

She is about the same as when I last updated, with the exception of her pressure sore, which continues to heal. No idea how that’s possible, but as it means less pain and suffering for her, I’m thrilled. 

I still am pulling my hair out with some of the administrative BS and runaround from hospice (not the nurses or aides!) but honestly?  Not worth my energy right now to go into details. 

I am still desperate for reliable, detailed, and comprehensive resources about end of life, active dying, whatever you call it. So if anyone can point me to books, articles, websites, blogs, please do. Yes, I can talk to the hospice nurse and facility nurses, and believe me I talk their ears off, but if anyone has recommendations, I would be most grateful, please. 

Hope everyone is as okay as possible and thank you for listening. It means a great deal.

Jane Smith

Ugh, lost my earlier post. 

She is about status quo.  Her pressure sore continues to heal/not get worse and no new ones have developed. Pain control is good, as far as I can tell. Actually not a lot to report there. 

I am still seeking reliable resources (books, articles, whatever) to give me more information about death, dying, active dying, transitioning, and whatever the heck it is my mother is doing (hanging out? Lingering?), please.   If anyone has any recommendations, please let me know. 

Hope you are all as well as possible. Thank you for listening.

Jane Smith

Again, she’s still here and about status quo. The pressure sore is no worse. Her regular hospice nurse is back from vacation and her regular hospice music therapist is back from her two week vacation to Florida (the one I heard about three days before she left, where I wasn’t given contact info for coverage while she was gone, but I’m not bitter, nope.)

Mercifully the hospice nurse who filled in last week is one I know and like, and my mom really responds well to him.  He is also very good at his job.

I wrote the music therapist a blunt but not rude email telling her how upset I was about 1) not getting what I asked for and 2) her unkind response to my statement about not being the only family member to ask questions. She wrote back today and mentioned 1) and what she intends to do about it, but not 2) at all. So one step forward and at least one back.

The clueless social worker may finally have heard me asking for help when I cried on the phone to her last week.  She still didn’t provide the resources I asked for, but at least her manner in the rest of the phone call was kinder.  She cannot seem to honor my request that unless it is an emergency (dead, dying, or seriously injured mother), she is to text me before calling me as I have, you know, a job at a busy doctor’s office and cannot drop everything every single time she wants to tell me something.  The best part of that conversation was when she said that on her visit to my mother that day that she (social worker) had noticed a big status change-my mother had fallen, fractured her hip, and was now bed bound. Talk about Captain Obvious because yeah, I hadn’t noticed that about my mom for the last several weeks. Sigh. (I know she means well but how on earth do they get out of social worker school with subpar communication skills and no bedside manner?)

We are short staffed at work this week so it’s extra busy at work, I have some family drama go on, and did I mention my unexpected houseguest?  I am definitely feeling overwhelmed. 

Thank you all for listening. 

King Boo

Hello,

I am only sporadically on the boards so I missed your earlier requests.   I looked around online tonight, and I kind of like this source of information:

https://www.agrace.org/wp-content/uploads/2016/10/Clinical-Practice-Guidelines-Active-Dying.pdf

It addresses a little bit of what hospice is supposed to do (which includes support and educate) and it is a little more detailed than most of the literature that is given out.

As daysn2nite mentioned, everyone follows their own path to death.  A friend of the family recently passed with none of the noise or dramatic breathing - she was just gone while asleep.

Unfortunately, both of my loved ones went the noisy way.  I had ZERO preparation for the first, and quite frankly was more than a little PTSD for a while.   It wasn't easy to go through the noisy breathing and secretions with my second one, but at least I knew what it was and wasn't freaked out - or if I was, I could talk myself out of it with knowledge.

Just know if their breathing is noisy it is more a function of brainstem reflexes shutting down, not really a struggle; and since secretions are not swallowed it can make things extremely noisy.  Hospice can give medication to dry them up if you want.

This trip has been one big project.  Don't make things any more of a project than they need to.  By nature, people are angry and upset at a time like this so the pastor you don't like is not doing this to aggravate you, it's all in a days work for him.   Just don't answer, and if he stops by just say "I don't want to talk could you please leave us alone now?"

And make those calls to the funeral homes now.  You will be very vulnerable if you wait till she passes and it can be thousands of dollars of difference.   Knowing what you want ahead of time lets you set informational limits with the providers.

Working in a medical office, it can be very hard to get off the information highway, so to speak.  You are also peopled to death all day which can make coping with things very hard after hours.  I feel for you.

aod326

Hi Jane. While I know you would have liked to get more direction from hospice, it really only takes a simple google search to find signs of active dying. During the few weeks before DH died (last month) I read so many books and articles, anything I could get my hands on.  For me I think I read and re-read so much out of a futile desire to be in control. 

As others have said, though, everyone is different. DH only showed signs in his last week. He was eating and drinking very well until one evening when he couldn't swallow. He lived seven more days, with the only liquid he received being his morphine.  He started Cheyne Stokes* breathing five days before dying, but had at least two days when his breathing was totally regular. Two days before dying his BP was still 128/75! His breathing rate went from 52 breaths/minute to 5 breaths per minute, and back again over the seven days. Our hospice nurse explained this was probably because DH was young (60) and in good physical health apart from the dementia. (*Definitely look up Cheyne Stokes breathing because that's something you'll want to know about for when it happens.)

You'll also hear about people having a "surge" before dying, where they inexplicably suddenly seem so much better. It's usually a few hours of 2-3 days before death - DH had a very definite surge, but 3 weeks before hand.

There is so much easily available info, but in the end, your mum will do things her way and you'll experience things in a unique way.

Good luck.

Jane Smith

Thank you for your responses. I really do appreciate it very much. 

My update today is not about my mother, but to say that our cat has not been seen for the last 24 hours. I also had to get a (luckily minor) issue with my car fixed today-and I’m grateful to have been helped out quickly by a kind acquaintance on that issue.  Also some other issues going on with some family drama.  

She’s an indoor cat; it’s unlikely she could have gotten out but nothing is impossible with cats; we are doing everything we can. If any of you practice sending energy, kind or healing thoughts, prayer, or whatever you call it, please spare a thought for my mother and my cat and for my husband, who is devastated that we have been terrible pet owners and not cared for out cat properly. 

Thank you.

Fairyland

Bloody hell, cats are one of those critters that are good at getting into scrapes. Once we lost a cat for days and she had climbed up inside a wall in the basement for reasons know only to her. Once another cat Tuffy I had adopted from a friend disappeared for weeks, then turned up skinny but otherwise fine. Years later, long after Tuffy had passed away dad admitted that because Tuffy had attacked and injured mum’s old existing cat, resulting in a vet trip for poor old Pip,  he drove Tuffy out about ?50 miles away and dumped him at a farm! Bad dad. He nearly had a heart attack when he came home from work and I said Dad! Guess what? Look who’s here! 

Do have a good look round even at unlikely places and ask neighbours to check sheds etc. Is your cat microchipped?

M1

When it rains it pours, doesn't it? One big stress makes all the others reverberate even more. Sending all good wishes for everyone including kitty....

MN Chickadee

Trouble comes in threes doesn't it. When my indoor cats have gotten out they have always been found very nearby but in hiding. They get scared and hunker down and refuse to come out. At dark go out with a flashlight and see if you can see her eyes reflecting back under a porch or bush. Also put her litterbox out so she can smell home. Sorry you have so much going on. I hope your mother continues to have peaceful days.