Medicare GUIDE Program & local help

In addition to the information on the GUIDE Program I posted about a month ago, I got a call yesterday that we are eligible for 19 four hour increments of respite care per year, from July 1 to June 30. This means up until this June 30th, I can use all 19 segments. The next step is an in-home assessment. After that the respite comes. I’m waiting to hear from the local company that will provide this service. My DH is still continent and can feed himself but cognitively going down and now needs constant supervision. I believe what helped most with being excepted was the burden on me. For the last 2 years I would occasionally take the Burdon Assessment for Caregivers. The last 6 months I noticed a steep decline especially, in the last month, which coincided with my very fragile mental state and grieving.

Regarding “Home Helpers”, they are completely voluntary workers in the community, donations accepted. They are providing me with:

>$100 a month towards light housekeeping. I can use someone I know or a someone they can provide.
>$1200 a year for respite, to use in whatever increments I want, again someone of my choosing or someone they can provide.
>Meals delivered, Wednesdays -1 fresh & 1 frozen. Fridays -1 fresh and 2 frozen. Note: I’ve never enjoyed cooking or planning meals but always happy to eat whatever someone else made. So I won’t complain about these meals. 🤞
>A nurse that comes in weekly to check on us and takes DH’s vitals, ankle measurements. Asks how we doing, if we need anything and listens. >A social worker who I can contact about what I’m needing and get info for me. She even called 2 different services for me who in-turn called me with all the services they provide, including the above. She also had a grief counselor who works with Hospice call me and I’ve got an appointment the end of May.
>The social worker also informed me of local help: A “Memory Cafe” that meets once a month (where caregiver and their LO go to socialize) and a drop off organization at a local church that provides respite care for 4 hours every Friday for $65. They provide many activities for LO and what I understand is a one on one. This is for up to moderate ALZ still able to use the restroom and feed themselves. We haven’t gone yet to see how DH will do but I’m hoping he will enjoy the company and activities. He always wants to go somewhere. He’s moderate to severe now.

All this help offered has come in this week and I am overwhelmingly overjoyed! So much better than the negative overwhelming I’d been feeling. We will be gone for the next 10 days so I hope that doesn’t hinder us going forward too much.

Since we love to travel, and I will no longer do it alone with DH, we are heading out tomorrow for a cruise to Alaska with 3 other couples (we all have been best buds for over 35 years, but now living in different states). They are so supportive! The only time during the travel I’ll be alone with DH is behind security at our local smallish airport. I was told that I can ask the people at the gate to watch him while I use the restroom, which is my biggest concern about losing him. Friends will be at the gate to meet us at our next connection where we will fly together.
To be cautious, I’m bring a waterproof mattress pad, some diapers and his weighted stuffed dog that he pets, interacts with and sleeps with. I’m hoping all goes well. I’ve also got our DPOA & POA for health issues and his P.O.S.T. (Physician Orders for Scope of Treatment). I also packed his suitcase for him which is out of his site. He has a backpack he can put stuff in if he wants which I will check its contents just before we leave. We just never know when “This will be the last time” to travel.

Dear caregivers, please contact the Medicare GUIDE Program to see if you are eligible. Also check out any helpful local organizations you may have. Start with a social worker to help you if this is overwhelming to get started.

As always, this site is the best for all-round caregiver support and education. As I learned from my Eagle Scout DH, “Be Prepared.” Hugs to all on this “New Adventure” that we would never choose.