Hospice, or The Cavalry is Here

Jeff86

Following my DW’s hospitalization for aspiration pneumonia, she returned home with her cognitive condition substantially unchanged (so much had already been lost) but her physical condition notably weaker. In particular, there are very observable declines in ambulating and transferring.

We had a follow up appointment with the NP and, given weight loss, food aspiration, and challenges in walking/standing, she made a referral to hospice. A hospital nurse evaluated DW on Monday, and DW has been accepted for hospice care. Between the home health follow ups from the hospital stay and now the hospice visits, it’s been a total whirlwind here. Visits from PT, a speech therapist (for swallowing evaluation), a social worker, visiting and hospice nurses (I am learning about coordination of care), a chaplain and so on are much appreciated. And make me think I need to install a revolving door.

The hospice folks don’t know bureaucracy. The next days brought a shower chair, meds (covered by hospice), a ‘comfort care’ package (with salves ranging from Tylenol to morphine), wound cleansing and bandaging supplies, and so on. The hospice nurse will make regular visits and we can have help from aides for bathing my DW.

I am beyond grateful for the considerable added support, even as I’m sorry it is only made available so late in the AD journey.

That said, it has produced mixed emotions. Hospice acceptance means DW’s long tenure in late stage 6 has ended, and she has progressed into the dreaded stage 7. We all know that AD is a progressive and ultimately fatal disease. Acceptance into hospice means, among other things, refocusing more on the ultimately fatal part. While I think it’s well within the realm of the possible that DW may live for some time and even ‘graduate’ from hospice, time is definitely telescoping.

Ultimately, at this juncture in our AD journey it’s about keeping DW as comfortable as we can make her. With that in mind, I have enormous gratitude for hospice’s excellent and experienced guidance. The cavalry, it seems, has arrived—reinforcements not to rescue my DW but to help bring her home.

Pat6177

Jeff, I’m glad the cavalry showed up. May they help both of you through the remaining journey.

Jo C.

Dear Jeff; it is good to know that you now have excellent support and are no longer alone in all the care dynamics. May Hospice be the gift that continues to shine in both of your lives.

Let us know how you are and how things are going; we will be thinking of you.

J.

Joe C.

Jeff, I am glad to hear that your wife is home and that you now have additional help with her care. I understand the mixed emotions that come with making the transition to hospice care but having their support will benefit both you and your wife. Hopefully PT & speech therapy can help with her physical challenges. Keep us posted.

Battlebuddy

So great for you to have Hospice care. Our stay was 2 years, so Hospice is no longer six months or less. You are so right that the cavalry has come. My favorite part besides bathers was just getting to talk every Thursday with the Hospice nurse about how the week has gone.

I think you did a good job of describing just what Hospice brings to the table.

M1

Thinking of you...I like your images of time telescoping and the revolving door.

Ed1937

Jeff, what a great post! I'm sure you feel both relief and saddened. But hospice is something you both need, and it can lift a lot of weight off your shoulders in different ways. Keep us updated on how things are going.

Beachfan

Jeff,

A revolving door, indeed! DH received Hospice services for only 3 1/2 days before he passed. In that short time, I met with the Hospice nurse 3 times ( a 4th visit was necessitated as a Hospice nurse had to “pronounce “), a social worker, a chaplain and a bath aide. Had I kept DH at home, I’m sure I would have requested Hospice services earlier. As it turned out, the brief time they spent with DH was invaluable. The social worker has since called several times to check in and offer support and encouragement. I hope Hospice allows you to care for your DH at home for as long as you hoped and planned. Always thinking of you.

ghphotog

Brought a tear to my eye upon learning the Calvary has arrived, howbeit late in the game, but they are there now and with the help you will make it. Brings hope to all of us. You probably still have a long way to go but you are no longer alone. Even if she "graduates" from hospice they are always there and ready if you need them again.

My DW still has a year or two to go in Stage 6, upon my estimation, but hard to tell because so many stages overlap. At least I know that when it gets down to it I know there is help. Just a long way to go in my journey still but we never know how things will play out. I'm glad you don't feel so alone now and there are people to help you carry the brunt of it.

A. Marie

Jeff, I'm so glad that hospice has arrived and has been so helpful. All the best to you and your DW as you negotiate the final portion of stage 7, from one who is in the process of working out stage 8. Vaya con Dios.

SDianeL

🙏🙏