Turning the corner

psg712 · May 19

My last post, about mom's progression, was five days ago. Things have taken a huge downturn since then. She is eating nothing, sleeping 99% of the day, opens her eyes to my voice (sometimes) but no longer reacts with recognition. No speech or sound. MC staff got her to the table this morning but she just slumped sideways in the chair. They had to lift her into a wheelchair and put her in bed. She's still there. Five days ago she walked outdoors with her walker.

I stayed with her this morning till the NP and the RN health director made rounds. At last, a hospice referral. Waiting for their call to schedule an evaluation. I can't imagine that she won't qualify. I'm sitting by her now, watching her sleep.

I suppose that this could be just a transient dip in function and she could rally, but I would be surprised if she regains speech or mobility. I don't know if she's had a stroke or if this is just end stage Alzheimers but it really doesn't matter. I made it clear this morning that she does not go to the ER. If she is at the end of her journey, I want her to sleep peacefully on her way to the place where there is no pain or disease. God's timing, but I pray she won't linger too long.

Sunfish47 · May 20

God bless you for not prolonging her suffering. She wouldn’t want it. You wouldn’t want it for yourself. No one would. Stay strong.

.Becky. · May 20

Sending you strength and peace. And sending it to your mom. May she pass gently. May her suffering end.

harshedbuzz · May 20

Thinking of you at this time.
HB

April23 · May 20

I’m so sorry. Thinking of you and thankful that you will be there to hold her hand through the end of her journey. hugs

cdgbdr · May 20

Thinking of you and your mom, wishing you both comfort and peace.

Emily 123 · May 20

I'm so sorry, but glad that you were able to get hospice on board, and end the trips to the ER. She will be where she's whole again soon. My thoughts are with you both, wishing you peace.

SDianeL · May 21

praying for you and your Mom. Hugs. 🙏💜

psg712 · May 22

Thank you all for your support. Hospice enrolled Mom yesterday. I feel relieved that is finally done. The nurse who came validated my opinion that Mom has been ready for hospice for quite a while. I am baffled about why the facility nurse kept trying to stall.

It's been a roller coaster this week. On Tuesday she looked awful, as I described here. Wednesday they got her up and out to the common room in her wheelchair, though she ate nothing. Yesterday morning when the hospice nurse came, she was back in bed and not very responsive. The nurse said she probably had only days to live. When I went by at supper time, she was sitting at the table, smiled at me, an aide was feeding her some egg salad. I sat down and took over the feeding. She smiled when I talked to her, ate about half the meal, said "Ok" when I told her I'd see her again soon. More alert than she's been all week. She's more impaired than ever but didn't look like someone who is imminently about to die.

I'm reminded though of my dad, who on the day before his death rallied to sit up and have detailed conversation with several friends and family. The next morning he was in severe pain and respiratory distress, his condition declined rapidly, and he died that evening. Only God knows the end of our days. The day mom was referred to hospice was the 16th anniversary of Dad's death.

Anonymousjpl123 · May 22

oh @psg712 I haven’t been on in a while but I’m so sorry to be seeing this. It sounds like an incredibly stressful week. I’m a bit baffled why hospice took so long - it has sounded like your mom has been ready for a while. I’m so glad she is now enrolled.

For what it’s worth, my mom went on hospice last summer and she is still going strong - by which I mean she is not unhappy, gets up every day, engages with staff and other residents. It’s kind of a miracle. She’s done really well with the extra services hospice provides and I keep worrying they will take her off but apparently she still qualifies.

So I am glad your mom is receiving care, but especially glad that you are advocating for what is so clearly needed. Here is hoping that you and your mom have some peaceful moments. I’m thinking of you.

terei · May 22

This is a reminder that the facility or the doctor’s permission does NOT have to approve calling hospice. A caregiver, on their own, can call hospice and have their LO evaluated. Having hospice come in to help only in the last few days of life is not what is optimum. Hospice is for the support of the patient AND the family that may be last many weeks or months. There is no downside to having hospice come and evaluate the PWD. If they do not qualify, there is no fee and they may have advice on how soon you should have them come in again. If you LO is not thriving and is losing weight that alone may be enough to get hospice help.

psg712 · May 23

https://alzconnected.org/discussion/comment/272999#Comment_272999

Very true. If I had my mom at home with me, I would have called in hospice months ago. I've been satisfied with her facility's care other than their eagerness to push antibiotics for any behavioral change (assuming the behavior was due to UTI) and send to ER. Those were the main reasons I pushed for hospice, until now.

Now that mom is not eating, walking or talking, i greatly appreciate the hospice support in order to keep her in the MC. The start up of services has been intense though - lots of phone calls from various people in hospice while I'm trying to keep all the plates spinning at home and work, fielding calls from family, etc. But still worth having the extra hands for mom. I'm especially thankful that hospice pared down her meds to the bare essentials.

psg712 · May 24

I met the hospice nurse today who will be primary for my mom (previously saw only the admission nurse and talked to the primary nurse on the phone). She sees all the residents who have hospice services at Mom's facility. She is thorough and experienced. She was surprised, however, to see mom dressed and sitting at the table. On her previous visits mom was in bed. So now the nurse doesn't perceive death to be imminent. What a roller coaster!

I think mom has just taken a big step down and is sitting on a new plateau. Staff get her up, dressed and to the table, but she has to be fed - can't manage even finger foods on her own- and will take maybe two bites at most with a sip of water or Glucerna. She stands to transfer but doesn't walk. And she sleeps almost all the time. So I'm glad that we have hospice on board, no matter how long mom has left to live. Although she's in a facility, I am exhausted from this week.

Emily 123 · May 24

It may be very up and down. I wasn't sure for a while if my mom's symptoms were a new progression and plateau, I remember thinking that perhaps she had picked up the bug that was going around, but something to me felt like she had rallied as much as she could and was done-not given up, but was just tapped out and starting to look more inward. Hope you get some rest.

psg712 · May 25

https://alzconnected.org/discussion/comment/273122#Comment_273122

"Tapped out" sounds like a good description of my mom right now. Today she's in the bed, won't respond to talk or touch. Obviously not eating or drinking today. We'll see what tomorrow brings.

ARIL · May 27

Thinking of you, @psg712. Thank you for your generosity in sharing this part of the journey with us. I too have been on a roller coaster with my PWD lately—death seems imminent, then he’s up and attending an activity, he sleeps almost all the time…until he doesn’t. It is so hard to know what’s coming next.

We are here for you.

psg712 · May 31

Thanks everyone. Its so comforting to come here and share with folks who are on similar journeys with their LOs.

Mom hasn't been out of bed in the last few days. Eating and drinking nothing. Sleeps most of the time, doesn't speak at all. The only thing that makes me believe she isn't quite at death's door is the fact that she physically resists when staff provide personal care. She took a swing at the med tech for putting a spoonful of applesauce (with crushed meds) to her mouth! But as soon as they stop moving or touching her, she is back to sleep with her arms crossed over her chest. While I don't wish her to die, I also don't want her to linger long in this state.

Emily 123 · May 31

I'm so sorry. It's very hard. It may be that she's at the point where she's ready and she doesn't want disruptions. For my mom, once she stopped trying to swallow her food they held her meds and went to liquid ativan and morphine under her tongue to keep her comfortable. She would drink a few spoonfuls of gatorade every few hours for the next day, then not taking or being able to swallow fluids for about another day and a half. I brought in a humidifier and chapstick to help keep her skin hydrated, and the team provided oral swabs so her mouth wouldn't be so dry. I am praying for comfort for you both, and will tell you what a friend told me: "Whatever decision you make will be the right one for you and your mom."

terei · June 1

In both of these cases I hope hospice is on board. Best thoughts to you.

psg712 · June 1

Yes, my mom is under hospice care. They have been great support in addition to the MC staff. Highly recommend!

jen ht · June 4

Sending you love and thinking of you @psg712 💜

psg712 · June 5

https://alzconnected.org/discussion/comment/274072#Comment_274072

Thank you! Two weeks after hospice said she had just days, mom is still hanging on. Unresponsive, no food or fluids, shallow breathing ... until she is turned or bathed or we try to moisten her lips. Then she gets agitated, waves her arms, shakes her head till we back off. Then back to sleep. My sister is coming to town this weekend. I wonder if mom is waiting for her.

psg712 · June 7

It's over. She was deeply sleeping and unresponsive yesterday and today. Appeared very peaceful. I sat with her this afternoon for a while, noticed some change in her color and her breathing but she seemed still to be relaxed. I went home to dinner, and the facility called to say she looked dusky and hospice was on the way. Before I could even get out the door, they called back to say she was gone.

My sister had made it from out of town to my house but not yet to the facility. We went over after she passed and spent a little time there. Then started the phone calls to extended family and friends. I don't think it has sunk in yet but I can only say thank God her long struggle is finished. Thanks to all of you who have followed along, especially in these last few weeks, for all of the support, advice and encouragement. You are the best!

April23 · June 7

https://alzconnected.org/discussion/comment/274235#Comment_274235

I’m so, so sorry. Please accept my condolences. You have been a wonderful advocate and caregiver. Your mom would be so proud. hugs

ARIL · June 7

Oh, @psg712 you have my deepest sympathy. Her journey here is done, and you were there to help her in the hardest times. You have been such a gift to her. Truly. You will have that knowledge for the rest of your life.

Now you will turn some attention to your own feelings, mourn her passing, and remember her whole life in its richness and complexity. We know that this moment is hard too, and in a different way. We are with you. 💔

Daisy4U · June 7

Sincerest condolences, @psg712, you have my deepest sympathy. It's been a hard road. Her suffering is over. With prayers for you and your family.

jen ht · June 7

Our hands in yours. I am so sorry for your loss. Continuing to send you love.

@psg712 💜🙏🫂

H1235 · June 7

I’m so sorry for your loss. I’m glad her suffering has ended.

Emily 123 · June 7

I'm so sorry for your loss, but also glad that your mother has been released. It's okay to simultaneously grieve and be relieved. It may take a while to readjust—I still find it odd that i'm not incorporating Mom's care into my thoughts constantly. Try to get a little space where you can clear your mind and take some deep breaths…

Anonymousjpl123 · June 7

I’m so sorry for your loss. You took amazing care of her and she’s really lucky to have had you. You were with her all the way. I’m glad it was relatively peaceful. I’ll be thinking of you and your family. Hopefully you will get some rest.

psg712 · June 8

Thank you all for your words of condolence, thoughts, prayers and your understanding. No one knows the road like those who have and are walking it! I appreciate each of you so much and encourage you to keep standing strong as you love and advocate for your family members with this awful disease.

Turning the corner

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