Respite recommended

Whyzit2 · May 23

At my last Dr visit she recommended that I utilize respite care for my DH because she thought after all these years (14) I deserved a break. I called the facility DH attends day care at two days a week. The director answered my many questions and when I asked the cost I discovered how valuable my caregiving time is. The facility requires 30 days of care at $325 per day…,,that equates to $9,750 a month….or $118,625 per year. Wow, I am valuable. I certainly didn’t earn that much when I was a teacher.
I thanked the director for the information and assured her that she helped me greatly in my planning. I’m thinking maybe DH and I should go on a Disney cruise and I’ll sign him up for all the kids activities. LOL Ha Ha Ha Ha Ha!!!!!!!😂

Jazzma · May 23

I found some local memory care facilities offer respite care on a day-to-day basis at a much more reasonable cost. I hope you can find something that works for you. Caregiving is priceless.

Marta · May 23

After 14 years, is your husband close to needing hospice? Medicare pays for respite care when on hospice.

SeattleChrista · May 23

I definitely understand frustration when you’re told you need help but help has an unaffordable price tag. I was able to find an amazing local resource of volunteers who provide some support to my parents who live out of state. They were amazing until Dad’s “unexpected behaviors” caused the volunteers to refuse to help any more. I totally understand their perspective. But the grief and anger that comes with being told help will be available only when your loved one is in hospice, that is just all kinds of painful. My prayers are with you.

ImMaggieMae · May 25

https://alzconnected.org/discussion/69313/respite-recommended

Wow! Is this 30 days of care per year, or??? I guess “days of care” means they don’t keep him overnight? Respite care sounds like it’s becoming a big business! These costs seem absurd. But then I guess what we pay for 4 hours, 3 times per week would come to even more than that if the caregiver stayed all day. And it seems like I’m increasingly spending those “respite” hours on the phone, on hold, waiting to speak to doctor’s offices, Medicare or other insurance companies trying to straighten out repairs to keep this house running instead of resting or doing grocery shopping.

trottingalong · May 25

many of us cannot afford respite care. We are caught in the middle of not broke enough and not having enough to pay. It’s a sad situation indeed.

Whyzit2 · May 25

Marta to answer your question, my DH still can do the ADLs with coaching. So no, hospice is not needed at this time.

ImMaggieMae the respite I was seeking is for 24 hour care at their location for the minimum they require of 30 days costing $9,750. DH goes to day care 2days a week from 9am to 3pm which costs me $90 per day or $180 for 2 days a week ($720 mo). I too find that the “free time” I have while DH is at daycare is usually eaten up by my own Dr or dentist, etc appointments because I can’t take him with me. I also get a shot in my eye monthly for a retina occlusion which kills one day.

I only checked this out because my Dr suggested it. She saw me when I was ill with a kidney infection and she was considering hospitalization for me. She wanted me to be totally free to rest and recover. Unfortunately I couldn’t afford it. I am now recovered and doing ok. DH is mellow most of the time just has no memory. This is a reminder that “the Calvary is not coming” even though I was hoping to be rescued. My one luxury is I order my groceries on line and they are delivered right to my kitchen counter which is a wonderful energy and time saver.

Blessings to all my fellow caregivers! Thank you for your comments and support.

Sunnyside42 · May 26

https://alzconnected.org/discussion/comment/210496#Comment_210496

I totally understand about trying to keep the house running. Things my DH took care of especially landscaping and the garden now fall on me. He was “handy” and now it seems every week something breaks that I need to pay a serviceman for. By day’s end, I am zonked. The cost of respite and Alzheimer residences is outrageous. Like you, we are in the middle after working hard to save a few dollars to enjoy our retirement years. Paying for care full time could empty everything.

ButterflyWings · May 26

One of the biggest blessings in this overall tragic situation is that in later stages and once DH qualified for hospice, both Medicare and VA offered us the 30 day respite option. It is 30 days per year, and a day=up to 6 hours each time. Like you said, I use this to do errands or appointments that I can't drag DH to. Not exactly having a R&R day at home, or going to a movie or something pampering just for me. "Respite" is a relative term.

As I type this, I wonder if both his Medicare ins and his VA health benefits would count? Had not thought about that. It would give me 60 days a year if so. Doubt it, but worth looking into.

My biggest issue has been finding an agency who could find a person that was reliable and consistent to show up and handle the tasks listed, which are not a lot. Mainly companion care since DH can't be left alone - at least at first that's what we needed. But we got to that point in the middle of the pandemic, so I also wanted vaxed caregiver who would wear their mask at our home and it is not something the agencies could require.

Now, the issue is he needs more attention and redirection (from hyperoral eating anything he sees - even if it is not safe to eat, to staying in arm's reach since he is a fall-risk, and maintaining line of sight at all times meaning not scrolling on their phone or daydreaming assuming he's asleep if he's quiet, etc.). I have had to find most of the recruits for the 2-3 agencies we have worked with over the last 2+ years, and they aren't necessarily wanting to do HHA work forever. More like a favor to me which is OK for a while but not ideal, and doesn't last.

Respite recommended

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