← Return to Walk With Bill_2001: Before & After Respite Care

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Here is the earlier post about the 4-day Respite care.

4-day Respite

Hi Friends,

My dear wife is home from a 4-day respite stay. Her hospice team recommended that I take the 5-day respite that Medicare provides for caregivers of dementia patients currently on hospice.

If you have not already checked on hospice services for your loved one, especially if they are into Stage 5 symptoms or later, I recommend it. Hospice has been very helpful to us.

She was scheduled for the full 5 days, but my emotions caved after 4 days (and really at 3 days), and I had had enough "rest" and just wanted my wife back home with me. I did all my errands and home projects and missed her terribly. Although she is well beyond any meaningful communication, I missed her presence here.

Respite is a wonderful resource; check into it even if you are not receiving hospice services. Sometimes we need a real break, or we need to get things done. That said, my heart was in turmoil the whole time, especially at night. Dear Lord, the long, lonely, worrisome nights. And it was only 4 nights. I have no idea how I will go on if I have to place her permanently, and I do not even want to think about anything that happens beyond that.

The price of love is grief, and spending 4 days alone allowed me to move through some grief on my own. Sadness I never knew was buried so deep began to surface. The pain, o the pain. Gee whiz. When she is home with me, I am too busy to grieve that deeply.

I got a lot of stuff done during the respite, and I caught up on some sleep. Does getting up at 7am count as sleeping in? I envisioned myself sleeping until noon, but that did not happen. Friends kept me busy and were a tremendous help, but I could not stop thinking about my dear wife while she was in respite care.

I called the respite facility and asked if I could pick her up one day early, as I missed her so much. It was no problem, and the nurse said that this was quite common. My dear wife was clean, dressed, fed, and alert when I arrived. The respite facility was great - no complaints, but it has taken a day or so to get my wife back "up to speed," as they are not very active at a facility.

In my care, I take her for walks (although slow and I assist now), and her attendance at adult day care 3 days a week gets her out of the house and keeps her active (relatively speaking). I believe this has slowed the onset of bigger mobility problems, but this is only my experience.

Respite is a wonderful resource for us caregivers but be aware of my experience. My dear wife needed a bit of reconditioning upon discharge. Her mobility had suffered a bit, and I spent the day walking her around (very, very carefully) to retrain her brain and regain muscle memory. If I take another respite, I will most likely take only 2 or 3 days.

Love Bill_2001

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Replies to "Here is the earlier post about the 4-day Respite care. 4-day Respite Hi Friends, My dear..."

@bill2001 Your videos were so lovely. I don’t have a journey yet-or even planned-but I can see the value of one. I can’t even make plans for when SO goes on fishing trips. I don’t waste time but think I use it productively. The videos are so lovely and inspiring. Thank you, Bill.

@bill2001
Bill
You don't post very often, but when you do, it's powerful and right on!
Radical Acceptance - I love being able to put a label on what I feel. I don't feel that way all the time, but I do have those days or times when, yeah, it is what it is, and it's ok.
My husband was diagnosed in 2012, but we all know it started long before that.
I still keep a copy of your May 2023 post, "The Cavalry Is Not Coming.
Thanks for your posts,
Trish