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Waiting for the nurse; may need bail money
MinutebyMinute
Posted: Saturday, April 4, 2020 12:24 PM
Joined: 6/11/2019
Posts: 511


The latter half of this week has been its own special kind of hellish.

Mom's longstanding bedsore, the one we could never get under control completely, morphed into a secondary one which had only this week started to get worse again. Result: abscess. Her regular hospital nurse ordered liquid antibiotic in hopes of clearing it up some. It arrived yesterday afternoon.

Mom has been, to say the least, uncomfortable. Sleeping more, even without medication. But for the most part, her waking time has been miserable. She hasn't had real food since Thursday, outside a few bites of soup last night and a few bites of pancakes a few hours ago. She did drink some this morning after refusing to drink much of last night.

Around 9:30, she practically leapt out of bed. "I've got to get out of here. I've got to get out of here. Let's get the car and go!" She was screaming and resisting all efforts to comfort her. She said she was in terrible pain yet clamped her jaw firmly against medication. Half the toes on her left foot were turned under meaning she couldn't walk, even if she could manage to stand. And yet, in her resistance to me, it was like wrestling a bear!

I tried to remove her diaper which was completely soiled. That took effort. Then tried to get one back on her. MAJOR FAIL. Finally had to settle for having one taped loosely on one side with a second unsecured on the other side. At least I got to clean her up and then try to manage that horrible wound.

Finally got some morphine in her and then a little later an Ativan (as advised by Hospice). Apparently, these two meds are made to work in concert. Good to know! I figured I should get the on-call nurse here to properly dress the wound and get a diaper on her. Maybe even showing me a way I can move her better with my screwed up hands. When the oncall nurse called me back I explained what was going on. Her initial response: "Have you considered hiring someone to help you?"

 WHAT?! I quickly explained that I DO have caregivers but only during the week. "Well we can't stay with her." Um, that's not what I was asking for woman!!!! Again, want the wound treated and help with the diapers. It was my understanding that that IS their territory! All about keeping them comfortable, right?! This woman has all the compassion of a cobra. Thank God our RN and CNA are both so wonderful. Wish I could reach either of them.

"I can dress her wound so I'll come but it will be a while."

That was 2 hours ago. Hoping by the time she does get her that 1) she's had a major attitude adjustment and 2) That I am much calmer. Otherwise, I may need bail money.

 

 

 


SunnyBeBe
Posted: Saturday, April 4, 2020 12:47 PM
Joined: 10/9/2014
Posts: 1036


Oh my goodness. That sounds so scary. I don’t know how you dealt with that. You really do need help. I hope it happens. Our hospice social worker has told me to call for any reason if I need help. Prayers for you and your mom. I hope things get better, settle down and that help arrives.
jfkoc
Posted: Saturday, April 4, 2020 1:51 PM
Joined: 12/4/2011
Posts: 18330


 

while Hospices must provide the same basic services they are not the same...you are allowed to transfer to a new one within I think a 90 day period...I found this out the hard way


MinutebyMinute
Posted: Saturday, April 4, 2020 2:06 PM
Joined: 6/11/2019
Posts: 511


UPDATE: The nurse came and left about an hour ago. Thankfully, both No.1 and No. 2 in my list above had happened before she arrived. No bail money required.

She started out kind of brusque but I was immediately straightforward. "Look, my mom is dying up there. I need help. I'm not asking for a round-the-clock caregiver. I need help right now, today, to keep her clean and comfortable. Can you help me … or what?"

After that, things went great.

We had to disturb a resting Mom but it was good. Mom immediately keyed in on the nurse's rings as she slid on gloves. Mom clearly hasn't lost her love of the sparklies!   It hurt me to see Mom in pain as we turned her and I helped by keeping her up on her side. I don't know if I'll ever get the diapers right but at least I can try. Quickly got another dose of morphine in her and I have freedom to give her the other liquid pain med at will. This will also probably help keep her temp in check.

Clean. Comfortable. Medicated. I can't ask for more. Before the nurse left the room, she told my mom: "You need to listen to your daughter. She knows what to do for you … and is taking really great care of you." Mom replied: OK.  I had to smile.

The nurse left me with some extra underpads (we're about out) and is ordering me some wedges to help keep her on her side to help with the wound AND to help me change her on my own.  So, all in all, a much better than anticipated situation. Mom had a lot to do with that. She didn't raise me to be bullied. So by standing up for both of us, I got a good result!


zauberflote
Posted: Saturday, April 4, 2020 3:16 PM
Joined: 10/24/2018
Posts: 971


M by M what a horrific beginning; I am very thankful that the nurse was able to help you both. Thinking of you during this rough rough time.
Suziesb
Posted: Saturday, April 4, 2020 7:22 PM
Joined: 5/22/2018
Posts: 359


Minute,  I'm glad you got results...how frustrating!  I'm giving my mom morphine more often as well. She has been having a lot more pain today.   Soaked her bed through the diaper and underpad. It' so tricky to change! She's been sleeping all day.  Not eating at all anymore, only taking sips. I'm wondering how long she will go on like this.  Hugs to you
SunnyBeBe
Posted: Saturday, April 4, 2020 8:07 PM
Joined: 10/9/2014
Posts: 1036


You all are really inspiring. I’m pretty sure I couldn’t handle the demanding hands on caregiving under these circumstances. I’ll pray for your continued strength. I hope you will find relief.
GemsWinner12
Posted: Saturday, April 4, 2020 9:21 PM
Joined: 7/17/2017
Posts: 403


I'm so sorry you're in this situation pretty much alone for the weekend with your Mom. Thank You for updating us and letting us know that the situation has improved (and that you're not in jail!).  Planning ahead for the next dose of medicine and change/turn; you might want to give the morphine about 20 minutes before changing her and turning her, so that the medicine has a chance to kick in and she won't be fighting you as much. Nothing fun about changing a dirty adult diaper on an unwilling (and angry) recipient.  

When my Mom was dying in Memory Care a few years ago, I brought in candles and played some of her favorite music.  If you have the time/energy, you might play some of her (and your) favorite songs; it's probably true that they can still hear and smell near the end of life, even while heavily medicated.  My prayers and thoughts are with you; may your Mom soon rest in peace. I'm sure she knows that her daughter is an angel on earth.  


dayn2nite2
Posted: Sunday, April 5, 2020 10:54 AM
Joined: 6/20/2016
Posts: 2246


For those reading later on and considering hospice.  One of the most important questions to ask is "what happens if my LO needs help or is actively dying outside business hours?"

Beware, you may have lovely people providing care normally, but if there is an emergency or you need assistance at night or on weekends you may be disappointed in the amount/type of help you get.

My LO was actively dying over a weekend.  I was VERY disappointed in the lack of support for me during that process.  I was lucky my LO was in a NH that provided care for her and support for me.

Everything was good until it wasn't.  The on-call nurse didn't even bother to call me after my LO passed, nor did she visit in the last 2 days of her life.  If I ever need to pick a hospice again, that is one of the first questions I'll be asking.
Army_Vet60
Posted: Sunday, April 5, 2020 11:49 AM
Joined: 6/21/2019
Posts: 682


dayn2nite2 wrote:


Everything was good until it wasn't.  The on-call nurse didn't even bother to call me after my LO passed, nor did she visit in the last 2 days of her life.  If I ever need to pick a hospice again, that is one of the first questions I'll be asking.
It's definitely important to compare available Hospices. 
    When my wife's neurologist agreed it was time for Hospice Care for her, I asked him which ones were in my area. He had a list available. I asked him if he knew them well enough to recommend the one he thought was the best for us. He did that and my wife got the best care possible, even outside the normal hours. Sometimes the nurse came late but that was because of a high volume of emergencies being answered. The nurse always showed up.

MinutebyMinute
Posted: Sunday, April 5, 2020 7:45 PM
Joined: 6/11/2019
Posts: 511


THANK YOU, THANK YOU, THANK YOU for all of the loving words and support. It's been a very difficult time around here and it's not likely to get better. We're still fighting a fever, whether it's from the infected sore or if we are, in fact, in active dying. To me, it seems like it could be a combination.

I've been camped out in Mom's room, either sitting in a wingback chair or on a portable potty (lid down ) with a pillow at my back since yesterday. We had some loving exchanges and she alternated between knowing it was me and well … not. And between talking to me and addressing the ceiling or whomever she was seeing there. Eavesdropping on these conversations, I heard her talking to or about many long-dead relatives and former neighbors. I kept hoping I'd hear her talking to my grandparents as I've begged my grandmother to come and get her baby soon. That hasn't happened yet.

Mom is still rallying with the strength of a bull moose. I slept in my bed about 3 hours last night but have been with her since 3 a.m. when she began calling out. One of my caregivers -- who was supposed to come help me clean and change her -- arrived with coffee and a stern order for me to take a break for an hour or 2. She cleaned, changed, medicated, and even got a few bites of food into Mom, before getting her situated comfortably back in bed. She even emptied the upstairs trash cans! I feel so fortunate to have this level of care in my home. She further insists she's not being paid for this. Well, we'll see about that.

I had hoped to take a nap but, while exhausted, I'm also wired, so sleep was a no go. I did fall asleep in the wingback earlier for about an hour. She napped during this time, too. The rest of the time she just talked on and on. Her breathing is starting to shift and her heart rate seem to be jumping all over the place. It will be interesting to see how tonight goes.

To that end, hospice is definitely a cautionary tale. I had an absolutely wonderful on-call nurse show up in the wee hours last weekend. He was sweet, kind and patient and very encouraging. And, even after a bad start, yesterday's visit turned out OK. Be sure to ask about emergency/on-call situations and what their practices and policies are.

It's just super awful to be here alone going through this. I never imagined this scenario in my wildest thoughts. But, we do what we have to. Which brings me to tomorrow's job: buy a casket. Someone here on one of the threads (and I apologize because I can neither remember who or find the thread) recommended trappistcaskets.com. For many reasons, it sounds like a perfect choice for Mom. Especially since it would seem that the pandemic will quash any chance of a "normal" service. It may just be me and Mom at the mausoleum!


LicketyGlitz
Posted: Sunday, April 5, 2020 9:47 PM
Joined: 2/3/2018
Posts: 717


"Have you considered hiring someone to help you?"

"HAVE YOU CONSIDERED I MAY BE POWERFUL ENOUGH TO PUNCH YOU IN THE MOUTH RIGHT THROUGH THE GAWDAMNIT PHONE!??"

Minute, as of Friday afternoon we too qualified for hospice. I am ready to learn from you how to stay out of jail.


MinutebyMinute
Posted: Sunday, April 5, 2020 10:13 PM
Joined: 6/11/2019
Posts: 511


OOh, Lickety! I'm glad you will finally get this extra level of help but sorry your mom has hit the mark to qualify. I'm laughing at your highlight because I called my godmother right after that call and said, "Keep bail money handy. I may have to punch a b*tch in the face." Not sure why these kind of things always seem to happen at times when I already should be wearing a warning label!

I definitely am no expert but will happily share my observations during less than 5 weeks in hospice. Just not tonight ...


Suziesb
Posted: Sunday, April 5, 2020 10:49 PM
Joined: 5/22/2018
Posts: 359


Oh Minute, I'm just seeing your post now, as I've been keeping vigil on my mom. I'm so sorry. It sounds like your mom is very close like mine is in her last days now. 

One mention I want to say to all about Hospice providers...yes, ask questions when you interview. I was fortunate with the one I chose for my mom (a nonprofit in our city). It has been great. Today an RN came out on a Sunday...insisting to come and see my mom when I was hesitant even! She was so helpful with giving me end of life advice and support today. Someone will be coming every day until my mom passes now, which is imminent. Though I have had daily calls even when a nurse, social worker or other person hasn't come. 

Glitzy, I would say if you think your mom might be close to being ready for Hospice, call for an evaluation, especially since she just went through the Covid-19 illness.  When my mom had the flu in January, even though she wasn't super ill with it, it's what caused her eventual decline since, and I'm so glad I asked for an evaluation. I never would have guessed she'd have declined so quickly the past week. The support has been invaluable.

It's crappy that it's happening during this time.  Also, a word about funeral arrangements since you all touched on it. We moved mom out of state. We plan to have her cremated here, and will bury the ashes later by my dad. They already have the gravesites by each other and a double headstone. We'll have a memorial service in months to come when the family can all be together. Hospice will call the mortuary for me. 

Minute, I hope you get some rest tonight.  Keep us updated.  Hospice nurse said that my mom will likely pass within 3 days since she has stopped drinking fluids now, though it may be more. So bittersweet. I want this to be over for her...she is in so much pain, and she wouldn't want to be living this way anymore with AD. Just sad....for all of us...
MinutebyMinute
Posted: Monday, April 6, 2020 4:47 AM
Joined: 6/11/2019
Posts: 511


OOh Suzie ... I have been thinking about you and wishing this site had an IM function to reach out directly. I'm back on duty in the wingback. Been up for about an hour now after catching a few hours of sleep in bed.

For me, the isolation is maddening. The one time in my life I need to be surrounded by people ... And I'm SOL. My caregivers are coming or I would probably crack. The second one checked in last night just like she had Friday night. She fully intends for me to try to sleep once she gets here. I don't know if that's possible but I'm exhausted enough and miserable enough with joint and muscle pain to try!

Calling hospice later because i want to see if our nurse can come today. We likely will need daily visits toi especially if this fever keeps raging. Mom still continues to cry out or carry on side conversations. It's been interesting to identify all the dead she has referenced, probably 20 people or more! 

The burial situation is heartbreaking. Mom is super anti cremation. It's the one thing in all this I won't violate. I may have to forgo rosary service and church Mass but I won't cremate her. She pushed me several years ago to buy a mausoleum space (we can share since I'm fine with cremation). If she hadn't, I'd still be facing that purchase, too!

If we do end up in worst case scenario, I'll plan a later memorial service and settle for she and me and a priest graveside for now. Even before COVID, this experience has been the nightmare you can't wake up from. Throw in the lethal virus and ... Wow. Nightmares on steroids!

I'm listening to Mom talk about fabric for chairs. She's said no names so no idea who's providing the rest of the conversation. I'm also wondering if she is redoing full-size (like dining room) or miniature (for a dollhouse) chairs. It's interesting what their heads throw out there! Guess I'll start working on that hospice post i promised or might wait til later when I'm back on a laptop. Hang in there, folks, no matter where you are in the journey.


OneofThreeDaughters
Posted: Monday, April 6, 2020 11:35 AM
Joined: 8/12/2019
Posts: 28


MinutebyMinute: I know that talking on this forum is therapeutic for you, but I want you to know how much it helps so many of us as well. Whether it's the practical advice, the insight into what we might expect one day, or simply the sharing of our common misery, your communications are truly appreciated. Thank you.

Oh, and I, too, am glad that you aren't in jail.


zauberflote
Posted: Monday, April 6, 2020 4:33 PM
Joined: 10/24/2018
Posts: 971


M by M thinking of you. I know that chair vigil well, having done it in several hospitals. I didn't do a vigil for her death because hospice didn't think this was her final time!! I do now own her little wingback chair though. My joints and muscles ache in sympathy for yours. 

This is fascinating that you can tell who she's talking to. Mom did some of that but her language was so poor that everything was just muttering nonsense phonemes. You are so good to sit with her, and having a caregiver like that is the best thing right now. 

Are you allowed by the church to say a Mass yourself? Like, is there a prayerbook you could read out of when the time comes? Can you administer Last Rites yourself? Those Trappist Caskets look FABULOUS! What a mission they have. 

Praying for your and mom's peace as you continue tonight. 


zauberflote
Posted: Monday, April 6, 2020 4:45 PM
Joined: 10/24/2018
Posts: 971


Suziesb wrote:

Oh Minute, I'm just seeing your post now, as I've been keeping vigil on my mom. I'm so sorry. It sounds like your mom is very close like mine is in her last days now. 

One mention I want to say to all about Hospice providers...yes, ask questions when you interview. I was fortunate with the one I chose for my mom (a nonprofit in our city). It has been great. Today an RN came out on a Sunday...insisting to come and see my mom when I was hesitant even! She was so helpful with giving me end of life advice and support today. Someone will be coming every day until my mom passes now, which is imminent. Though I have had daily calls even when a nurse, social worker or other person hasn't come. ......

Minute, I hope you get some rest tonight.  Keep us updated.  Hospice nurse said that my mom will likely pass within 3 days since she has stopped drinking fluids now, though it may be more. So bittersweet. I want this to be over for her...she is in so much pain, and she wouldn't want to be living this way anymore with AD. Just sad....for all of us...

Susie, I am sorry, and thinking of you with as you travel this last mile of your paths. Your "final rest" arrangements are very similar to mine. We had Mom's body cremated here because it is SO much cheaper and easier to mail ashes than to transport a body from anywhere to anywhere except across town. She was mailed to the funeral home she'd chosen for my dad (similar situation: cremate where he died, mail ashes to cemetery where their plot had been waiting for decades) and herself. So she's currently in a funeral home closet, overlooking the Main Street she grew up on,  with who knows how many others, waiting for us all to be able to travel for services. 

Thinking of you, wishing for peace in your heart and cessation of pain for your mom. 


zauberflote
Posted: Monday, April 6, 2020 4:53 PM
Joined: 10/24/2018
Posts: 971


LicketyGlitz wrote:

"Have you considered hiring someone to help you?"

"HAVE YOU CONSIDERED I MAY BE POWERFUL ENOUGH TO PUNCH YOU IN THE MOUTH RIGHT THROUGH THE GAWDAMNIT PHONE!??"

Minute, as of Friday afternoon we too qualified for hospice. I am ready to learn from you how to stay out of jail.

I give up! Apologizing for whatever this nay wind up looking like. Even the italics go away. Lickety, of all the folks on this forum, you'd be the one to get the Go To Jail card. Don't even think about it!
I'm sorry your mom is at hospice point, but glad for you to have the help

I  give up!! 


Suziesb
Posted: Monday, April 6, 2020 8:05 PM
Joined: 5/22/2018
Posts: 359


Minute:  I too, wish there were an IM function.  Thinking about you as well.  Mom's caregiver came today and helped me give mom a bedbath, change sheets, and get her comfy. It will be the last time she sees her as the hospice nurse said she will likely pass in two days or less. She is not talking at all now. The house seems so quiet. Within one week she really declined, it's so hard to believe.

Zauberflote, thank you for your kind thoughts. I know it wasn't long ago you were in our place. Yes, I'm glad we can go the cremation route. I plan to do the same someday when it's my turn.

Glitzy: I'm sorry, my brain is so tired I didn't realize your mom had already gotten approved for Hospice. It feels weird to say I'm happy for you, but I am. It's such good support.

Take care, all.  Oh, my, what in the heck day is this, anyway?   See, I'm still smiling.


MinutebyMinute
Posted: Monday, April 6, 2020 11:00 PM
Joined: 6/11/2019
Posts: 511


THANK GOD FOR THIS FORUM!

It has been so great to have others out there in the trenches (though I hate that you all have to be there). Give me a second to backtrack on this thread! In my haze of yesterday, I missed a lot.

Day2 and jfnk -- I'm sorry you had such horrible experiences. I worried about this when I made my choice. I did know, though, that I had the chance to switch at least once. That's probably the one thing everyone considering or going into hospice needs to know!

One of three -- THANK YOU! Writing is very cathartic for me -- always has been. Sometimes before I post I reread and wonder if I should because they are usually so long. I don't try to edit myself in that way for these posts because it is a form of therapy. I'm glad I can share something helpful in the middle of all my ramblings!

Gems -- You're definitely too kind, but thank you. I'm not doing anything less than what I was raised to do. My mom gave up so much to ensure that I could have the chance to do a little bit better. How could I not support her every way possible?  

Sunny Be --- THANK YOU! You've got a lot on your hands as well. If you had to do it a different way, you'd find a way to manage. Love has an interesting way of powering impossible. 

ArmyVet -- Now there's a voice I've missed. I followed your gentle care of your wife when I first joined the site and I felt so devastated for you. You continue to be a great advocate for us all. Bless you!

Zauber -- One word: Wingback! In the weirdest of coincidences or else a clearcut case of divine intervention, we have a pair of wingbacks that were in our old basement family room. They were among a few furniture pieces not to be destroyed when it flooded last summer before I could clear everything out. I wasn't sure what I was going to do with them. As we began redoing the family room to prep for sale, I thought about just leaving them there. And I probably would have except … when we put Mom's hospital bed in place last month there was nowhere to sit with her! So I deep-cleaned the bejeezus out of them and brought 1 here for her room.  A few ideas on what I'll ultimately do with them but nothing final yet.

Suzie -- I am SO sorry. Trust me when I say I get how hard this is, especially when you're by yourself. It's seems horrible to say but there is really nothing else to do for them. You said yourself she wouldn't want to go on like this. Doesn't make it any easier, really, but it gives you validation that it really is for the best. I hope you can find comfort in knowing you provided such loving care for her all this time, putting your own life on hold. You did all you could -- really. May it lessen your pain.  {{{Suzieb}}}


Suziesb
Posted: Tuesday, April 7, 2020 9:58 AM
Joined: 5/22/2018
Posts: 359


{{{Minute}}} Thank you. The hospice nurse said this yesterday, that there is nothing more I can do for her.  I don't have a wingback chair but I do have another chair by her bed, and I sit there with my cozy blanket sometimes. 
You also gave the best loving care you could of your mom and put your life on hold!! So I feel when we let any tiny bit of regret in our thoughts that we could have done this or that any better, we need to stop that negative thought. Because we did the best we could. As did all of us on this board, whether their LO is in MC or whatever. We make our best choices for our LO.

Take care all.


zauberflote
Posted: Tuesday, April 7, 2020 12:07 PM
Joined: 10/24/2018
Posts: 971


Suzie, you are So Right about not letting regrets strain our emotions. Every person here is doing/has done the improbable, and many are doing the impossible, one day at a time. I am a perpetual "beat self up over the stuff I couldawouldashoulda", starting at the time of adoption of our second child*, so was a true expert when it came to Mom. Oddly (but not), I don't regret not being there physically at her dying time. Unbeknownst to me, I was guiding her spiritually by just happening to be reading the powerful scriptures she had chosen for her memorial service. Exactly over the time she was dying. There is no other way for me to have done that. I'm sure she was aware of it. The dying must be so close to the veil that they can sense through it. 

Well there was a bit of therapeutic writing, wasn't it. We all do exactly our very pinnacle of best. 

*not regretting adopting him, just spending nearly 30 years feeling I could have done better by him! 


zauberflote
Posted: Tuesday, April 7, 2020 12:08 PM
Joined: 10/24/2018
Posts: 971


M by M how are things? I'm thinking of you and mom with love and prayers.
MinutebyMinute
Posted: Tuesday, April 7, 2020 1:45 PM
Joined: 6/11/2019
Posts: 511


Oh, Zauber ... Mom has been a regular spitfire the last 2 days. She has been eating and drinking again, tho in small proportions even compared to what she was eating before last week.

We are fighting terminal restlessness that rivals almost any other stage! At least she's not mobile. But she doesn't know that and fights desperately to get out of bed. She is just not going to give in. It's heartbreaking.

 I have been listening to her rail against her caregiver a good deal of the day today. They're at it now. I know she is trying to get meds in her because the CNA is enroute shortly for a cleanup. (Thanks, Gems for suggesting the timing on that!)

Can't wait to see how THAT visit goes. I was warned that she would rally; I don't think any of us were prepared for this.


zauberflote
Posted: Wednesday, April 8, 2020 1:26 PM
Joined: 10/24/2018
Posts: 971


Oh my gosh MbyM, how difficult for both of you! And the caregivers too. I have heard that this type of rally can happen but yours is the first story of an actual person. Do you suppose she's in pain from the abscess? (That is your mom, right?) or having a reaction to the antibx even?

This might have been the point where, if my MIL or mom had done this, we would have asked the hospice nurse if a little ativan would make her more comfortable. Thinking back, Mom might have done a little of this, but it was short-lived. She was just worn out, among other things. Sounds like your momis not quite that worn out yet. 

You know how they talk about how a dying person will hang on and hang on until, say, a far-away grandchild arrives, or someone says something to them that somehow completes their task? Could there be something of that sort going on?


MinutebyMinute
Posted: Wednesday, April 8, 2020 2:06 PM
Joined: 6/11/2019
Posts: 511


Zauber --- Yes, this is my mom. And we have been using Ativan regularly for a while now. (It had only been PRN before that which meant MAYBE once a day every week or so.) In fact, Mom got the dosage doubled in an Rx which arrived this morning. Talk about timing.

Sadly, no, Mom has no grandchildren (I was her only shot -- FAIL  ) and I am also her only immediate family. We have other family, more distantly related, that we are close with, but they are almost exclusively local. And with this damnable pandemic, she couldn't see anyone anyway. 

Caregiver and I were talking about this earlier. I think on some level she knows she is dying. And I'm thinking she doesn't want to. She's still battling a fever (though it's coming down) and she is probably incredibly uncomfortable. Combine that with medication and all of the metabolic changes she's experiencing as things either begin or continue to shut down and that seems like enough to make anyone erratic!

My caregiver of yesterday (I have 2 that trade off) said she did not think this is a death rally; my caregiver today said it's possible but isn't convinced. (Both have worked with ALZ and hospice patients for years.) So … who knows?  We'll just keep trying to keep her comfortable. Don't know what else to do.

 

 


zauberflote
Posted: Wednesday, April 8, 2020 10:15 PM
Joined: 10/24/2018
Posts: 971


Ay-yi-yi, M, sounds like you have all the bases covered and then some. Your caregivers sound like gems; I'm so very glad you have them!

I will think of you again tonight. Hoping there is sleep in it for you!!


abc123
Posted: Thursday, April 9, 2020 1:17 AM
Joined: 6/12/2016
Posts: 988


Dear Minute, you and your Mom are in my thoughts and prayers this morning. I hope your Mom finds her peace and rest soon.
MinutebyMinute
Posted: Thursday, April 9, 2020 9:10 AM
Joined: 6/11/2019
Posts: 511


Zauber, abc -- Thank you! That means a lot. I DID get some sleep last night, but I certainly earned it. Mom was peaceful for the first few hours after the caregiver left. Then … BAM!!!

From around 7 p.m. til after midnight, it was an ongoing battle even with meds. She'd knock off for 5-10 minutes and then be right back at it. At least three times later in the evening I was SURE she was done for the night. But no … We finally got past it between 12 and 1230 a.m.

Hospice is all about comfort. She is certainly NOT comfortable.

Caregiver is with her now and I am trying to peaceably drink a coffee. God knows I need the caffeine. 

Nurse just called and will be here in a bit. Time for a discussion about medication!

 


zauberflote
Posted: Thursday, April 9, 2020 10:06 AM
Joined: 10/24/2018
Posts: 971


M, I don't know how either of you can possibly still be going! This is SO difficult even to read about. I hope hospice nurse can get some better meds suggestions from her MD. 

I don't really know what else to say except I'm praying as I write, for peace for both of you. I really appreciate your updates; they help me visualize your situation. 


SunnyBeBe
Posted: Thursday, April 9, 2020 12:09 PM
Joined: 10/9/2014
Posts: 1036


This is really an odd turn of events, but, I know it is too much for you alone. I have read that sometimes there is a rally right before the end.  Who knows what to expect now. 

What are her vitals?  Can the nurse give you any further info on what is going on? 

I'm so sorry you are going through this. I pray that you both find peace soon. 


Jo C.
Posted: Thursday, April 9, 2020 3:09 PM
Joined: 12/9/2011
Posts: 10742


In addition to what is happening or not happening with Hospice; something else came to mind.  From what you have written, there has not been a dementia specialist who has given you that crucial accurate diagnosis for actual type of dementia.

Should your mother have one of the FrontoTemporal Dementias or a non-Parkinsons Lewy Bodies Dementia, her reaction to the meds usually prescribed for Alzheimer's Disease may cause a negative reaction.  The one doctor saying she had, "garden variety dementia," did not do a service to either of you. I am sorry that happened.

Secondly, for some people, they can get or develop a paradoxical reaction to meds that are usually used to calm them.  This means that instead of calming the person, the drug can ramp the negatives up.  Tranquilizers and other meds fall into this sort of category and it will be a process of trying and elimination to rule things in and out.

It is such a bad place for you to find yourself, and I am truly sorry. I am also sorry for your mother who is also suffering with all that is whirling inside her head causing her such terrible upset and lack of peace. If Hospice cannot manage calming this themselves, they may want to seek the advice of a good Neurologist  who may be able to assist guiding them with meds that may possibly give better results.

I wonder if the Hospice provided you with an alternating air mattress that can help with the healing of her present decubitus and prevent new ones.

Let us know how you are and how things are going, we truly do care.

J.

 


MinutebyMinute
Posted: Thursday, April 9, 2020 6:44 PM
Joined: 6/11/2019
Posts: 511


Zauber, Sunny, Jo -- THANK YOU! Sometimes I think the dialogue on this site is the main thing keeping me sane.

The consensus: She’s on a “sharp decline.” The difficulty is that she has an iron will. (Just in case anyone wonders where I got mine from.) She appears to be battling death with the heart of a lion. Meanwhile, for all of the fighting, both her body and brain continue to deteriorate at a pretty fast pace. It’s soul-crushing to witness.

We've just started a specific and timed medication regimen for pain. The most important thing is to get her comfortable. She has NOT been for several days and it’s been hell for all of us. Hopefully, this new schedule will help.

Thanks, Jo, for the insight on the medication. In addition to that initial 2017 "garden variety" diagnosis, Mom received a "probable Alzheimer's" diagnosis last August from a neurologist at one of the leading memory centers in the country. I highly suspect she is a "mixed" case of AD and vascular dementia.

 It could be that she's having a bad reaction to the pain meds though I'd think it would be the case every time she takes it if that was so. Both hospice and my relative who is a retired RN and former hospice nurse think that Mom is no longer capable of accurately determining if and when she's in pain. Hence, we need to get out in front of the pain and medicate. While these meds in tandem DO seem to pretty much knock Mom out, the hospice RN said the doses aren't strong enough in either case to preclude her from being conscious.

We'll see how it goes. I know it's possible that I've had my last conversation with my mom, that she may either be asleep or beyond intelligible talking at this point. But this is where you have to set priorities. Is it more important that I might have a few conversations with my mom … or to try and guarantee that she doesn't suffer? God, I HATE THIS DISEASE!!!!

Early this morning, she was talking about a dead aunt and a living cousin. "Do you know her?" she asked me. I had to laugh. I've known her my whole life! She's my godmother. And in some way, maybe I got my wish today. My caregiver said, "Do you know someone named Vivian?" My heart leapt. That's my GRANDMOTHER!!! "She wanted to know where Vivian went."

 I'm pretty sure she took a sabbatical from heaven and she's around here somewhere ...

 

 


zauberflote
Posted: Thursday, April 9, 2020 7:41 PM
Joined: 10/24/2018
Posts: 971


I was all in favor of Mom being comfortable (of course nobody suspected she was going to die when she did, including hospice!) so sleeping was a good place to be. She may have been doing the same riffling through the rolodex that your mom has been, just, less clearly. But she was agotated and unhappy as she did so. Sleeping relaxed her. 

Vivian! Just when we need you! I expect she is around, and will collect your mom shortly. There will be joy.