“She’s mostly in her own little world now”

Vitruvius

Those following our story know my DW is in the final stages of Semantic Dementia and on hospice. She is losing weight in each monthly weighing. But she is still hanging on although clearly declining weekly.

I was discussing my DW’s situation with the hospice nurse. I noted that my DW seems to be in a state of being either asleep or almost asleep, and I can’t be sure which almost all the time. I was trying to solicit some opinion about how much farther my DW has to go.  Of course they really don’t know and always want to take a positive spin on it. So the nurse said basically she is “still with us to an extent, but she’s mostly in her own little world”. She noted she does not exhibit any signs of pain (only when they move her, change her, or try to unfurl her contracted muscles).

My DW has lost so much weight she looks like a victim of starvation, which to a certain extent is exactly what is slowly happening to her. I nearly broke down when I helped the aide change and dress her as she softly moaned from the discomfort of being moved about, opening her eyes briefly with a look of anguish. Her arms and legs thin, the skin loose and discolored, and cold to the touch.

Yet she still eats fairly well.  She expresses some acknowledgment of people’s presence when they talk to her (fair loudly), although usually only with soft humming sounds. The MCF still puts her in a Broda chair and take her to the morning live music performances daily.  We have set up a music player in her room and I put together MP3 CD’s that play for many hours.  For late stage residents the MCF wants to play soft soothing music continuously while these patients lie in their rooms.

There’s really no point to this post other than my need to “talk to the wind”.

M1

My heart is with you. More than the wind is listening. Peace brother.

fmb

We are all here for you as you and she come nearer to the end of her long journey home. Sending peace and strength for the days to come.

Jeanne C.

AAlso wishing you peace.

trottingalong

Your post hit a chord. Thank you for writing. I believe we are all here for you.

GothicGremlin

We're here for you @Vitruvius . This all sounds so painfully familiar, particularly the weight loss and being in her own little world. I remember the shock of seeing Peggy so thin on one of the days when I helped to move her. I'm sorry you're both going through this.

I don't know how it is for your DW, but I know that the personalized CDs (from her vinyl collection) we made for Peggy made a difference. Every once in awhile (near the end), she'd still hum along to her favorites.

Thinking of both of you …

Jgirl57

We are here for your words in the wind. Thank you for sharing your thoughts. Hugs to you as this final stage progresses.

JeriLynn66

Hugs and prayers. We're listening. And we hear you.

mrahope

So, so sorry you're going through this bitter ending of such a long journey. Thank goodness music still can provide some comfort.

Arrowhead

Sometimes we all need to talk to the wind. My wife is early in stage 7. She always loved music and dancing. She no longer dances, and her favorite music doesn't seem to affect her.

ImMaggieMae

wishing you strength and peace.

ButterflyWings

(((@Vitruvius))) We are right behind you and your precious DW. DH is looking so thin these days. He will be skeletal in another 2-3 months if this continues.

He taps his foot against the other one in time to his favorite music. And sometimes to his own tune which I can’t even hear.

So, so sad. As you see, we hear you.