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Bad nights, breathing difficulties
Suziesb
Posted: Tuesday, March 31, 2020 7:03 PM
Joined: 5/22/2018
Posts: 359


Mom is end stage now and on Hospice, but oh this is getting harder each day. Especially being sheltered at home. I've been up with her at night, especially the past two nights, because her breathing is getting more labored.
Today I checked the archived subjects to read what is "normal" for actively dying and it sounds like she has entered that phase.   It's so scary to hear her.  Last night I gave her morphine for only the second time from her comfort kit that Hospice gave me. I have been worried to give her too much. Today Hospice reassured me I can give it to her more often and keep her comfortable.

She is very weak today, sleeping much more.  She hasn't known who I am for awhile but yesterday she didn't know who SHE was, either.  Fortunately, she isn't frightened. She is peaceful. I am thankful for that. I am going to keep trying to keep her as comfortable as I can. 

It's difficult not to feel stressed when we're here at home "sheltering in place". I can't see my family, my kids, my grandkids. They won't be able to see their grandma to tell her goodbye. My siblings won't be able to fly here to see her, either. It's surreal.  


MinutebyMinute
Posted: Tuesday, March 31, 2020 7:20 PM
Joined: 6/11/2019
Posts: 511


Oh, Suzies … {{{{{{{{HUGS}}}}}

When I get super frustrated, I have been thinking of you, you who is completely isolated with no help. (That's me on the weekends.) I am still having my caregivers come because I have to be able to work -- which Mom will not let me do if she knows I'm here.

When is your quarantine up? Will hospice be able to come in soon and assess? I'd lose my mind. I really would. I'm already starting to crack a little under the stress of it all. Can't imagine NEVER having help. The caregivers and now the Hospice folks are such a lifeline for both of us.

Morphine … You won't give her too much. We just started with it a week ago. I've been reserved with it (usually only at night, occasionally early morning when she wakes up in horrible pain) but both the Hospice nurse and my godmother (a retired RN AND a former hospice nurse at end of her career) says if she's hurting, give it. Idea is to keep them comfortable. I SO feel you. I was terrified the first time I gave it to her. The morphine will help the labored breathing … it will make them breathe very shallow. Glad I knew that in advance or I would likely have freaked out more than once.

 Also turns out I was giving it wrong. You don't WANT them to SWALLOW. You want it to ABSORB IN THE MOUTH. So, my initial doses took forever to do anything and then it didn't last very long. Sunday night I learned why. Had to call on-call RN to help. Mom was backed up and in horrible pain in her stomach and chest. Because of her history of diverticulitis, the constipation and pain were concerning. Especially of multiple doses of laxatives over several days yielded no results.

Mom is now back on track with BMs. Today she even let the CNA bathe and change her gown! But, she's getting weaker. Where she could at least walk around a bit, even managing the trip up or downstairs with assistance, that's no longer happening. She can barely stand, if at all.

I'm so sorry you are in these circumstances. What we're experiencing was bad enough without a deadly virus thrown in. Know that someone is thinking of you and rooting for you, too, to get through it all.


Sayra
Posted: Tuesday, March 31, 2020 7:41 PM
Joined: 8/10/2016
Posts: 2143


(((Suziesb and Minute by minute)))
Suziesb
Posted: Tuesday, March 31, 2020 8:40 PM
Joined: 5/22/2018
Posts: 359


{{{Minute}}}  First, thank you , thank you, thank you, a million times. We have been on the same trajectory it seems.  I didn't know about the morphine and letting it sit in her mouth! No one told me!! So thanks for that info. I'll try that. The hospice nurse stopped by this pm because we are off of quarantine as of a few days ago, thankfully!! She's becoming very close to us. She also reassured me to give the Morphine more often, even during the day, which I was hesitant to do. My mom has always been very stoic, and lately even with AD, has been difficult to assess for pain. It's only when she rubs her neck, says it hurts, or her hip where she broke it two years ago, that I realize she's actually hurting much more than she used to. I never realized she would have pain towards the end. She also gets headaches now. My brother in law is also a physician with experience with hospice, so I called him today, and he gave me the same direction as you did...to up the Morphine, even during the day, and increase the dose at night. This was while I was waiting to hear back from her hospice team and was worrying about giving too much. So, it's nice to have the reassurance all the way around. I'll tell you, I'm a nurse but this is NOT my area of expertise at all. I am learning like everyone here. So, again, thank you, my friend.

I'm also having one of mom's caregivers come to the house while I work from home.  It's such a relief to have her. No, I didn't have her the two weeks I was on quarantine, so I really appreciate having her back this week! (I felt like I was losing my mind toward the end, as you mentioned). Was talking to our dogs a lot.  haha.

And thank you, Sayra!! Omg what would we do without this group here!


SunnyBeBe
Posted: Wednesday, April 1, 2020 9:46 AM
Joined: 10/9/2014
Posts: 1036


I don't have any advice, just wanted to say hello and see how things are going.  I can't imagine having to go through things this way.  I hope the morphine will help and ease things for your mom.
Jo C.
Posted: Wednesday, April 1, 2020 10:01 AM
Joined: 12/9/2011
Posts: 10742


Dearest Suziesb and MinutebyMinute, there are not words sufficient to say how heartfelt sorry I am for what is happening; especially at such uncertain times that leaves one so isolated; this must be especially difficult in your circumstances.

I am heartened to hear that the morphine has been helpful and your dearly Loved Ones peaceful.  Please know you are being thought of; think of us by your shoulder even if it is  electronically.  We are with you in spirit.

With warmest of thoughts and soft hugs being sent your way,

J.


Suziesb
Posted: Wednesday, April 1, 2020 6:25 PM
Joined: 5/22/2018
Posts: 359


Thank you, Sunny and Jo.  Big thank you.  I can't put into words what it means to me.

Mom slept better last night with giving morphine before bedtime rather than waiting until she was in trouble in the middle of the night. So, I'll give the same dose again tonight. I've been researching it more and it relieves my mind about the dosage at end of life care.

The hospice social worker called today and is going to get a conference call together with my siblings from out of state (my brother is out of the country even and can't get back now). We're going to start working on bereavement counseling with her since they won't be able to fly here to see my mom before she passes.  I called my sibs to give them a heads up yesterday...saying that she could hang on for months, less than a month...it's hard to know at this point.

Thank you again.  

Warmly,

Suzie


Michael Ellenbogen
Posted: Wednesday, April 1, 2020 7:25 PM
Joined: 11/30/2011
Posts: 3058


If you have a computer with a camera I would be more them happy to set up a video conference call for all of your family. Its very easy to use by just receiving an email and press a link.  


SunnyBeBe
Posted: Thursday, April 2, 2020 1:18 PM
Joined: 10/9/2014
Posts: 1036


My goodness SuziesB.  That's a lot for you to manage. Waiting is horrible.   I hope the extra support helps.  My LO's social worker and chaplain have helped me a great deal, though, my LO is not near the point your mom is. I'll be sending warm wishes your way.  I'll wait for updates, understanding you have a lot on your plate right now.
Jo C.
Posted: Thursday, April 2, 2020 2:43 PM
Joined: 12/9/2011
Posts: 10742


Thinking of you and stopping by to say hello and hope you are doing okay.

J.


Suziesb
Posted: Thursday, April 2, 2020 6:47 PM
Joined: 5/22/2018
Posts: 359


Thank you so much, Michael. I'll let you know.
Michael Ellenbogen
Posted: Thursday, April 2, 2020 7:48 PM
Joined: 11/30/2011
Posts: 3058


If you need me please reach out to me privately as I may forget to look at this thread. Please do not think twice about this as I am more then happy to make it happen. 


abc123
Posted: Friday, April 3, 2020 2:20 AM
Joined: 6/12/2016
Posts: 988


Hi Suzie. I'm checking up on you.  

I was hoping to see an update. I hope your Mom is comfortable. The both of you are in my prayers and in my heart. I'm so sorry your family can't be with you right now. Please let us know how you are. 


Suziesb
Posted: Friday, April 3, 2020 5:48 PM
Joined: 5/22/2018
Posts: 359


Tearing up here over you lovely people. I hate this disease.

Thank you, Michael.  Jo, Minute. Sayra.

Abc123 -  I feel so emotional. Since yesterday mom just stopped eating. Her pain increased, even with the Morphine. I brought her out in the living room and then could hardly get her back to bed. So, I believe that's the last time she may have left her bedroom.  I think I read that once someone's stopped eating and drinking the timeline shortens for death. She's barely drinking and mostly sleeping now. The Hospice Social Worker has been a good support, as has been the nurse.

It is sad for our family with the shelter in place since no one can fly to say goodbye to see her -- we are in different states. However, my brother facetimed with her today, so that's what we'll keep doing with him and my sisters. 

As I said before, it's just a surreal time.

 


MinutebyMinute
Posted: Saturday, April 4, 2020 9:18 AM
Joined: 6/11/2019
Posts: 511


Oh, Suzie. You've been in my thoughts as I believe we are indeed on the same trajectory.

They sent antibiotics for Mom as her worst sore, the one we could never fully control, is now abscessed. She was burning with a fever last night. The medication seems to be helping her to rest more peacefully but, like with you, she has had nothing, except a couple bites of soup last night, since Thursday. She's barely drinking.

I so feel you on the surreal. It hurts so bad that this may well go down and I won't be able to have a funeral.

I am glad you have other family to reach out to and SO sorry that they can't get you to both right now. Keep in touch with them however you can. Talk about adding insult to injury. THIS. EFFING. DISEASE!!!!!

I am SO angry for all of us. I am crying as I type this … something I don't often allow myself to do because it's too hard to stop once you start.  HUGS, HUGS and more HUGS, love, light and a huge dose of strength headed your way. May our moms both get the peace they so richly deserve.