4-day Respite

Bill_2001 · July 26

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

Ed's mom · July 27

Thanks Bill, you've shared a lot of things I hadn't thought about. After months of arguing and paranoia it's difficult for me to think about missing it all honestly. To think of respite from this is a dream, and we're just starting this journey.

I feel like she's already not here most of the time, if I go anywhere it's usually alone or with my dog. When we are together I have to ascertain who I'm with, the original or the one with dementia because sometimes it's hard to tell. Those times are getting fewer and more people are noticing the difference. This is her's to share so I have only told a couple of my close friends. I just feel lonely.

Biggles · July 27

Yes getting up at 7am is a sleep in. It’s nice to hear you Bill, I think of you and your DW often, mainly because you are on my fridge. Deep grief is definitely the price you pay for deep love, my sister who has been in and out of a few marriages said to me not so long ago, you feel the grief so deeply because you have been together for so long (at this stage 55 years) she said I don’t think I will ever have the privilege of ever feeling that deeply. We won’t get too philosophical about that statement, but I think I would feel deep grief even after a very short time with my DH. However, I took it as a compliment to my relationship with my DH. I too cannot fathom the grief I feel watching my DH departing from me. I so understand.

dcare45 · July 28

Thanks for sharing that, Bill. Respite care has been suggested to me a few times. I considered it but am worried how my DW would react to it. My fear is that it would stress her out even more. I can tell the difference in her from 6hrs at the Enrichment Center. No idea how 5 days would impact her. I'm also the kind of person (maybe a little pessimistic) that would only be seeing the end of respite care and know it will all just start up again so might as well just deal with what is at hand. I'm glad it worked out well for you and your DW. It sounds like you are taking great care of her. Again, thanks for the positive post. I'm really not that pessimistic 🙂

Adarnell · July 29

We are considering next steps for my father-in-law (maybe a memory care facility). During the process, we need to be out of town and were considering placing him at the facility for during that time. We, of course, are concerned about his comfort and whether this would cause confusion and anxiety. But on the other hand, we cannot change our out of town plans and trying to schedule other care givers would be an extreme burdern and stress on us - especially if one should cancel while we are out of town. why is this such a hard decision for us? Any opinions? recommendations? How should be position it with my father-in-law? Who should drop him off? He already blames my husband for taking the care away and that leads to anger outbursts. Any thought would be greatly appreciated. We are going to look at the facility again (without him) today. We checked it out last summer and were impressed.

iowagirl1961 · July 30

Thank you for sharing your experience. I am starting to think that I should consider a few nights’ respite but am in dcare45’s boat in thinking that what good will respite be when it will probably stress him so much and I’ll just be going back to the same caregiving life. Maybe my pessimistic outlook is a clue that I really should try respite.

Lilydaisy · August 13

https://alzconnected.org/discussion/comment/278587#Comment_278587

I appreciated your thoughts, because they are similar to mine and I am considering getting away for just 2 nights. When our daughter is caring for her, so I can get a few hours for exercise or errands or appointments, my DW constantly asks our daughter where I am, how long will I be gone, etc. Possibly meeting my need at the expense of hers doesn't feel good.

I don't disagree with or judge any who find respite gives them strength to carry on. We should make our decisions without caring what others may think. My best to all who face this question and have an opportunity to get a break.

4-day Respite

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