8 Comments
User's avatar
Philip Ruge-Jones's avatar

This is so true: the weight of knowing what I needed to do was harder to carry than the fact of having it done.

Kathyrn Merrithew's avatar

My husband has late stage Parkinson’s, and I need to get hospice involved. It’s a complicated ride!

Pam Johnston's avatar

It is, but hospice has been so helpful. I hope it will be for you too.

Vicki Tull's avatar

My experience when hospice entered my husband's life was the same. I finally had access to a multidisciplinary team of clinicians and social workers who communicated with me openly and frequently. Lee was in hospice service for 14 months, before he passed in March. He was treated with respect and dignity to the very last breath he drew. I am glad for you that you're finding some relief and comfort.

Searching for the Words's avatar

Again I read your words and just think, “Thank you, Pam.” And, “I’m sorry.” Before Doug was diagnosed we made most of our end of life arrangements—purchased urns, a niche, etc. I’m glad I was able to have his input into those decisions. But I’ve not yet arranged for our cremation. There is time.

Pam Johnston's avatar

Thanks as always, Patricia, for reading. I’ve been relying on God to tell me when and what to do throughout much of this journey—and I’ve watched so many pieces fall into place exactly when I needed them to. So when my intuition moved from telling me “There’s no hurry” to “You need to get this done,” I followed that lead.

Michele Wood's avatar

I totally agree with the shift in thinking, changing the goal. While you are in midst of Mike’s disease progression and constantly dealing with anticipatory grief the relief and support of hospice can be life affirming for the caregiver. This was true for me just a few months ago. I sense many people/families delay this decision. I hope to continue to inform and encourage use of hospice both as caregiver respite and for greater patient comfort and quality of life.

Pam Johnston's avatar

Honestly, hospice has been the best thing to happen to me (or, rather, us) in a really long time. The shift of priorities hasn’t been easy to make, but that would be the case regardless of whether or not hospice was involved. Having their support and guidance has been such a huge relief.