After the fall(1)

Jane Smith

My mother is still about the same. I saw her yesterday afternoon and for a short visit this morning before work. 

Still no sign of the cat.

Jane Smith

Mother still the same 

Cat found almost 50 feet up an oak tree (tree line behind our houses). Fire department came but not able to get her. Called a cat whisperer guy-no idea what to call him except the cat guy-and he assures us he can get her down but we need to wait for daylight. 

Hope to have a good outcome to post tomorrow!!!

Thank you all

Fairyland

Well that’s progress with poor pussycat! Hopefully she will be ready to accept help. Unlike most PWD. Though maybe cats have more in common with some people that we would prefer! 

Once in the 90s I think, my mum got a tough little boy who was always in trouble to climb up and save the cat, he did it really well. I had palpitations imagine if he had fallen having  been sent up there by the owner of the cat, tree and property!

Jane Smith

Apparently we are taking a detour about the cat, although I am heading to the facility to visit my mother today.

So kitty is still up the tree where she was last night. My husband abandoned efforts to sleep outdoors, but did sleep downstairs with the sliding door and downstairs windows cracked open, so he could hear her if she headed for home. 

The cat guy wants us to be patient and see if kitty will move down a little on her own, to a spot where she can be more quickly rescued with less upset to her (and safer for both cat and human).  My husband wants the cat down NOW. 

The nursing home (even with the new admit cursing and hitting everyone, poor lady) is a way more appealing place to be today. And I’m sure I have errands to run!!

I will let you all know. Thank you.

Jane Smith

Kitty is out of the tree and in the house. 

She’s tired but seems basically okay but of course we will get her checked out by her vet  

Cat guy was amazing. Details later. 

Thank you all so much for listening!!!!

M1

Hooray for at least one bit of good news today!

Jane Smith

The cat checked out okay at the vet. She’s tired but recovering. My DH is also recovering. He was very stressed!

(I was stressed also but just had to keep going, you know?)

My mother’s pressure sore is completely healed. They are talking about taking out the Foley catheter when it’s time to change it, and leaving it out to see how she does. We think some of her scratching/restless behavior may be that it’s bothering her and she’s trying to reach it. 

They also want to talk about decreasing her morphine but I want to make one change at a time. So I authorized removing the Foley catheter, but not a morphine change yet. 

Otherwise it’s the same. Work is busy, family is nuts, there is too much to do and never enough time. 

Hope everyone is hanging in there.

Jane Smith

I lost my post!   Arrrrgghhhhhhhhh 

Over Memorial Day weekend mom decided to get out of bed, so the staff got her up before she could fall, Put her in a wheelchair, toileted and showered her and then she fed herself an entire meal. What the heck. I was at a loss.

She’s been getting up intermittently ever since. 

Last week they ran a UA with culture and yesterday hospice nurse texted me to say, mom has a uti and we started antibiotics.  

They know darn well they are never ever ever to start, stop, or change any medication, prescription or OTC, without my consent. I was livid. 

I called the hospice nurse and you all probably heard me yelling, crying and swearing from wherever your homes are.  She did listen and did sincerely apologize, which is more than I’ve gotten from most people at hospice. 

The unit nurse manager (works for the facility, not hospice, and I trust her) told me the culture showed mostly E. coli, which is not surprising given her situation. She also talked me through the options, unlike the hospice nurse, who just told me that “we always treat UTIs.”

Yesterday I gave hospice a written and verbal order that they are not to give antibiotics for this infection.  I talked to the facility and told them the same thing, so I know that none were administered, even though they were ordered before I was informed.

Today the hospice nurse texted me to say she was doing chart notes and wanted to “clarify” if I did or did not want to give the antibiotics. 

I am not a litigious person, or one given to hasty or vengeful actions, but I now understand why people want to sue in situations like this. I would sue them into the next millennium if I thought I had a case to bring against them. 

It’s also frustrating that it took hospice well over a week to have equipment (a better wheelchair than the borrowed one from some guy down the hall) delivered.

I cannot begin to express my fatigue and frustration.

In other news, my aunt who lives in another facility in a city about a hundred miles away was sent to the hospital today. There is no family in that city that will go to the hospital with her (long story and don’t get me started) so she is alone and scared there. She has some sort of cognition impairment, I think early or even middle stage dementia, but officially only MCI. We think she maybe has congestive heart failure but there seems to be something else going on and it’s hard to get good info over the phone from the ER. Supposedly they will admit her but you know how that goes. I was looking forward to a day off on Thursday but may need to go there tomorrow after work and spend Thursday at the hospital. 

I am so tired. 

Why won’t hospice help my mother and help me instead of making this all harder??

King Boo

 Were they suggesting IV antibiotics?

Oral antibiotics are not invasive.  UTI's are not comfortable; oral antibiotics can easily treat the UTI.  Hence, it would not be an unusual part of hospice care.

People die as a direct result of UTI's turning into sepsis.  Not a particularly pleasant end, multiple organ failure, etc.   This is why the nurse needed to document that you refused the antibiotics, because they would be hugely liable for not treating this as it is non invasive. And a reasonable part of hospice care.

Equipment delivery is not the fault of hospice unless they failed to place the order.  Vendors have to be Medicare vendors and the supply chain of virtually everything is all messed up and delayed because of the shut down.

This is a hard process.  There is nothing to be gained by an adversarial relationship at this point.  Change your hospice providers at the next certification period if the situation permits. 

But there are still standards of care that hospice must provide.  Some hire a GCM to assist with the stress and to have third party expert insight in the care journey.

Iris L.

I have not followed the entire story but I had a thought.  I apologize in advance if it is not helpful.

I am a former medical professional.  One can tell if a urine specimen is contaminated by seeing the presence of squamous cells from the skin.  E coli may be present on the perineum area and is easy to pick up if the specimen is not collected in as sterile a manner as possible.  You mentioned a catheter.  Was this a catheterized specimen?  Some doctors may make the clinical decision to treat prophylactically with antibiotics or to try D-mannose.  .

Iris

King Boo

Looking at things from the other end of the telescope,  the hospice nurse had to call and document your request of not giving oral antibiotics.  Unless it was via IV, oral antibiotics is not invasive treatment for a highly uncomfortable UTI, it's part of comfort care.  Oral antibiotics stops a UTI from turning into sepsis, which can turn into an uncomfortable death.  

What you requested is not the standard of care.  They have to protect themselves from liability. Some doctors and hospices will not work with a family who feels that "  they are never ever ever to start, stop, or change any medication, prescription or OTC, without my consent. I was livid." 

Your mother appears to be having a rally.  Not treating a UTI will probably impact this.    

One of the gifts of hospice is often a brief rally that lasts days to perhaps weeks.  Only direct care staff could give you information on whether this is what is happening.  

Hospice must order equipment from an approved Medicare supplier.  The shutdown has created a supply chain issue and DME can be in short supply; hired help definitely is.   It's not their fault it was not delivered in a day or two unless they did not place the order, which is unlikely.

Some find a third professional like a GCM helpful even during hospice.  An idea.  

  

M1

Jane I wonder if it would help to just tell them not to do any testing, period--why even look for a UTI if not going to treat?  It's very hard to get that message across sometimes, doing diagnostic procedures becomes a kneejerk reaction that they don't think about.  But I would suggest you phrase it that way:  no diagnostic testing, period.  All measures to be for her comfort only.  Maybe that will get through.

M1

And by the way, that goes for very simple things:  no blood pressure checks, no temperature checks, no weight checks.  Why do them?  They become so reflex that no one thinks about it.  Don't collect useless information.  If she's comfortable, she's comfortable.  If she's not, you do what you can to make her comfortable.  To me, that's what end of life care should be about.

dayn2nite2

I agree with M1, tell them no testing, no treatment, comfort care only. 

I kind of get where your hospice is coming from here.  You want detailed information on your LO and want her "tended to" I guess would be the term, but then when they "tend to" her, you are highly agitated.

You spent an enormous amount of energy demanding they give you detailed information on the dying process (which is impossible because all people die differently) and then when a chaplain attempts to tend to one aspect (the spiritual and non-tangible aspect), you claim he/she is harassing you or bothering you and refuse all contact.

I think perhaps since your LO is now up and about and isn't in the active dying phase, you may want to find a different hospice that you are more in tune with.  Your LO could live a few more months or longer and I can see this is not going to be a good experience for you.

King Boo

Looking at this from a different pair of goggles:

From the view of a hospice provider.  UTI's can be painful.  Having a UTI is going to torpedo the rally your mother has right now, where she is able to get up and enjoy her meals.  Having an untreated UTI can progress to sepsis, then to multiple organ failure, etc. and all the nasty things associated with sepsis.  Oral antibiotics are non invasive and can relieve the UTI.

They are calling you to appropriately document your decision not to treat this UTI because it can directly lead to her death and because it is not the usual standard of care.  IV antibiotics are invasive; oral, if she can swallow, not invasive.  No need to be indignant about it.  They don't want to be sued. 

Quote: " They know darn well they are never ever ever to start, stop, or change any medication, prescription or OTC, without my consent. I was livid." 

Presumably because there is a relationship lacking with this care facility, there is no trust.  Unfortunate. It makes things a lot easier.    A Who's the Boss standoff is a no win for all parties involved.  

Equipment delivery delay is a product of the shutdown.  They have to order it from an approved Medicare provider, who in all likelihood has encountered the same supply chain issues as every other industry.  There is also a labor shortage, so no delivery driver, no wheelchair.

King Boo

Some would construe basic oral antibiotics as comfort care.

A UTI is uncomfortable, a urine catch is an easy way to test for it, and if the antibiotics are oral, they are non invasive.

A UTI can lead to sepsis and all the uncomfortable things associated with death by sepsis.

That is why the hospice nurse is calling you, because not treating this with oral anti biotics can be viewed as breaching comfort care and they need to cover themselves from liability as this can lead to her death.

They also wanted to document it again because this is likely to impact the temporary rally you are seeing, which is a frequently occuring, albeit brief, gift of hospice. 

Adversarial relationships and yelling seldom benefit any party.  If you do not have trust or your philosophy does not mesh with hospice, you can certainly remove the service.  It is not impossible for a medical professional to discharge to another provider for things that interrupt providing appropriate care.  Keep this in mind.  

The wheelchair must be provided by a Medicare certified provider.  Supply chain is messed up from the shut down and hired help for delivery hard to come by.  Not hospices fault.   

Jane Smith

As always, I appreciate the feedback and candor. 

I agree that I am sending mixed messages to hospice and it’s not helping. 

Months ago we did change her status to DNR, comfort care only, do not transport to hospital and all that. 

I did not request or authorize that urinalysis last week-hospice just did it without asking me. I only knew they did it, because a facility staff member mentioned it to me, thinking that hospice had told me. 

Hospice also told me this week that even for patients on comfort care only, they do check for UTIs and, I quote, “always treat UTIs with oral antibiotics.”  They may have told me this but I honestly don’t recall, and I was surprised to hear this (and it sure isn’t in the paperwork they gave me). 

I still don’t think it’s unreasonable to ask that hospice talk to me before starting, stopping, or changing a medication, since the facility has done this with no issues for six years, but perhaps I am mistaken.

I am definitely exploring other hospice options.  In the meantime, I am only communicating with the hospice nurse, and only as needed.

I visited Thursday and my mother seemed status quo. Hospice did finally acquire a more comfortable/correctly sized wheelchair and there was also a ?Broda chair in her room, which the staff were happy about as they feel they can make her more comfortable in it. She is getting up every 2-3 days. 

I only want the least amount of pain and most possible amount of comfort for her.

On a side note, the newest admission to the unit has made a remarkable transformation in the past three weeks. She is much calmer and has stopped hitting people and while she is still upset about “being dumped,” her agitation is significantly reduced. Her situation is very complicated and sad so I am glad to see that the staff/neurologist have been able to reduce her distress and it’s possible she will settle. I would have bet the farm on her not being able to stay in the facility, having seen her admission. 

M1

I am also surprised by their "UTI" policy.  Antibiotics are not completely benign by any means, and can cause multiple side effects including diarrhea, rashes, nausea, and development of resistance, just to name a few.  Like pneumonia, infection of the urinary tract is very common, and not all infections have to be treated/should be treated, especially at the end of life.  So it's not clear they should even be looked for in a true hospice setting, frankly.  Odd policy, and I think you are certainly within your rights to challenge it.  now if she were complaining of bladder pain/pain with urinating, that's one thing.  But I doubt that....

Jane Smith

Aaaaaaannnd the facility just called. She fell out of bed. The hospice nurse is on the way to assess. No obvious injuries or pain but still?

dayn2nite2

Awwww…hell.  I swear it’s always something.  I hope she didn’t break anything.

Jane Smith

Thank you all. 

Dayn2nite2, I especially appreciate your candor. 

Hospice checked her over last night and no obvious injuries or fractures. No sign of new or different pain.  I think her bed was lowered most or all the way to the floor, and they have a crash mat next to it (the other side of the bed and the head are against the wall) so it would have been less of a precipitous fall and more of a tumble, but still, the open side of the bed is the side with the hip fracture.  And falls are never good. 

The nursing staff reports today she seems fine and in fact tried to get out of bed on her own again. So I would guess she’s not in any pain, or at least the morphine is controlling it. 

Dementia:  never boring!

Jane Smith

I saw my mom today for the first time in a week. 

It’s a good thing the unit nurse manager and the hospice aide warned me that I would see a noticeable change from last week, because otherwise it would have been even more startling than it was. Her face looks different, she has lost weight (visible in face and collarbones), and there was just something…different. 

Having said that, she is otherwise baseline. She is wanting to get up roughly every other day (and has an appropriate chair now, thanks to the facility, not hospice).  No signs of pain or distress when she is transferred.  No signs of problems from the untreated UTI. 

So, declining, but not actively dying. I guess?

Who knows?

dayn2nite2

Things sound like they’re winding down.  Unles she has an acute event like a heart attack, I’d look for no longer getting out of bed as the next signal.

I liken the dying process to a feather falling from the sky, it goes down gently on a slow trajectory and then is carried by the wind at the same level for a bit, then begins to fall again.  Rinse and repeat.  

Is she still eating at all?  If she is, is she finishing meals?  If so, her body may not be able to sustain weight and that can be a signal too.  If she’s not really eating, that’s the source of the weight loss.

Jane Smith

Dayn2nite2, that’s a great metaphor.  Thank you. 

I was so upset seeing her yesterday I only stayed a few minutes in her room. And I can’t figure out if or how to go and visit.

I knew none of this would be easy. 

kmk77

Hello--I just logged back on here for the first time in quite some time.  I honestly don't even remember making a profile.  I was just going to look around, but after seeing your post, I wanted to write a quick note and just say regarding hospice that I had a very, very .... very difficult time with them and in the end, it was the staff at my grandma's nursing facility that got us through.  My experience with hospice mirrored yours in many ways, while different in others, but the bottom line was that they simply were not what my family needed at the time, did not work well with the nursing facility, and were very difficult to communicate with.  The single solitary helpful thing they did was give us a pamphlet that clearly outlined the physical symptoms of active dying.  Thanks to that pamphlet, when that time came, I was able to recognize what was happening, and get my small immediate family gathered.  To give you an idea, we noticed a significant decrease in the amount of urine in her foley and a pronounced darkening in color (harder to judge if, like your mother, there is no foley). I know the timeline is different for everyone, but in our case, she had never appeared to struggle to breathe until the last day.  Her skin, particularly in her limbs, became mottled and increasingly cool to the touch.  Her breathing became slower, more shallow, and less regular.  I also know people often have the experience that they sit vigil with their loved one and their loved one then passes away while they are alone.  In our case, my grandmother had made very clear over the years, particularly in the year before her death, that she did NOT want to die alone, so when the time came, those that mattered most were by her side.  Your mother may be totally different, of course, but those are some of the specific signs I remember seeing and knowing that meant death was likely imminent. 

In terms of hospice, I know many have had very, very good experiences.  We did not and can certainly appreciate the frustrations you've expressed.  My sense is that it can be a very different thing to have hospice coming into an LTC facility vs. coming in to a home.  In our case, they became a significant impediment for the LTC staff, who had become family and who knew my grandmother, our family, and our family dynamics inside and out.  The hospice nurse assigned to my grandma refused to communicate/return messages, as did many of the other on the "team." The frustration and eventual lack of trust was deep enough that when I was alone with my grandma and realized she was entering the active dying phase, I spoke with the LTC staff, they confirmed my observations and notified hospice as required and when the SW from hospice showed up wanting to notify the hospice nurse, I refused.  She did anyway and a fill in nurse came by and did very little because there was little left to be done.  The LTC staff and physician were taking care of my grandma's needs.  About 8 hours later when my grandmother took her last breaths, my parents, sister, and I were with her (along with Frankie, the cat). The LTC notified hospice and yet a different fill in nurse showed up. My dad had been my grandma's lead POA, and I was the one legally authorized to act in his stead. My dad's two younger siblings had forced everyone's hands on hospice, and then both left town when it became clear my grandmother was in her final few days.  No one from hospice had ever bothered to return a call to my dad or to me.  Hence the lack of trust.  To add insult to injury, as we were sitting with my grandmother's body and a different fill in nurse came blustering in, she sat in the room and called the morgue and because she did not know enough about my grandma, simply handed the phone over to me when they answered - while I was sitting next to the bed with my grandma's body in it. Having to have that conversation in that position when hospice had refused to return any of my previous calls was a very hard pill to swallow.

I'm so sorry you are going through this with your mother. My mother has stage 6/7 AD, and my dad is in mid stage VD (which is why I logged back in here for the first time in a long while this morning).  Amazingly, my 98 yr old grandmother was clear as day. But, it was my experience with losing her and the responsibility on my shoulders during that situation that prompted me to write this note.  I know hospice does amazing things.  They've done amazing things for others in our family.  But, when I was going through the frustration with hospice 2 1/2 yrs ago with my grandmother, I had a hard time finding anyone sharing experiences that were less than stellar.  In our case, we would have been much better off had we never added hospice to the equation and simply relied on the staff and medical professionals at the LTC who had become family to my grandma and to us.  Hospice was an impediment for us and a significant frustration.  So, I wanted to let you know that while I know they are wonderful in many situations, not everyone's experience with hospice is positive and you are not alone.  One of the best pieces of advice I got while my grandma was declining over her last year was simply to trust my gut. I followed that advice during that difficult time and never regretted it.  Let hospice be helpful where they can truly be helpful for you, but I would continue to push back when you feel it's in your mom's best interest.

I know (as do many others here) how extraordinarily difficult this time is and will be thinking about you and your family.

Jane Smith

kmk77, how extraordinarily kind and thoughtful of you to take the time to write your very helpful post, and to share that with all of us. I appreciate that very much. 

I had meant to log in last night to say that I was so upset about seeing the change in my mother on Friday, and feeling upset about not being able to stay in the room with her for more than an a couple of minutes, that I went to visit her yesterday (Sunday). I asked my husband to come along for moral support. 

On Sunday she was about the same as on Friday, except she had wanted to get up, and her speech was a little different. She also didn’t have much appetite for lunch (except dessert) and for the first time, I was not able to get her to drink using a straw. 

I got a call a little after 6:30 this morning that she had died.

The staff feel she likely went in her sleep, between their check around 5 am and 6:30 am. 

I’ll write more later but wanted to let you all know and to say thank you.

ladyzetta

Dear Jane,

I am so sorry that your Mother has passed but you know it was her time and she is in a better place. You were a wonderful daughter to her and always had her best interest in mind. Hugs to You, Zetta 

star26

I'm very sorry about your Mom, Jane.

dayn2nite2

Now see, I wouldn't have predicted that.  I'm very sorry for your loss and I'd like to tell you you have done a wonderful job on behalf of your mother.

I'm feeling like she saw you and your husband and perhaps afterward she decided this would be a good time to exit this world, because you are okay, he is okay and she was being taken care of by the staff at the facility.

Did she look "different" on Sunday?  I'm asking because during my mother's dying process there were times I could look at her and it looked like her, but there were definitely times where she looked, as you put it, "different" to me.

Also, I know others will be reading this thread and I haven't related this story for a very long time about hospice, but since kmk77 gave her experience, I wanted to add mine in too so readers can see that hospice can be good, but hospice can NOT be good too.

My mother's hospice did okay by her, except while she was dying.  Because she died on a weekend (after hours).  I felt like we were left to navigate by ourselves and I thank God she was at least dying in a place where we felt cared about by staff and not at home.

During the 3-day period she was actively dying, I got 1 phone call from an "on-call" nurse telling me she was "still alive"  and that she would let me know if something changed.  I went to the facility, the nurse was long gone, the staff stated she was there all of 5 minutes.

I left to go home on Saturday night around midnight and came back on Sunday at 8 a.m. (my brother stayed during the time I was gone).  I never heard from that nurse again.  The facility staff were wonderful, they brought me coffee, asked me if I needed anything to eat from the kitchen (no appetite) and my mother died at 3:06 p.m. that day.  I was with her, but I know she probably only wanted me there and not my brother.  

The grief support I was supposed to get never happened, the grief counselor decided to pass me off to a local funeral home for a grief group because she decided by herself that it was "too far" for me to drive (I would have driven as far as I needed to).  

I always advise people whether they have their LO in a facility or at-home hospice, make sure you ask what the plan is when your LO doesn't die within business hours.  If I had to pick, I'm glad they helped my mother so much and left me hanging, but they made a big deal about hospice being "for the family too."  They dropped the ball with the family.

MN Chickadee

My condolences Jane. I am glad she was able to go peacefully in her sleep. You did a good job for her. 

Interesting that you are all talking about your LO looking different towards the end. My mother looked "different" the last time I saw her, couldn't really put my finger on why. But but I don't think she is close to death, not quite anyway. I'll be curious to see what happens with "looking different."