Sooooo Frustrating!!!!

Sooooo Frustrating!!!! Warning…Long but Important Post

My mother, Ms. Lula, is almost completely bedridden. She no longer walks, transfers independently, and is completely incontinent. She cannot articulate her needs at all. We have to know by putting her on a schedule to ensure she’s clean, dry, and free of infections or bed soars.

It takes 2 of us to transfer her. We use a multitude of assistive devices to make it as easy on myself and the caregivers. I’ve purchased the Beasy Board so she can glide from one location to another. I don’t recommend the one we have for it’s difficult to get under her and she’s afraid when it’s time to slide. She yells out a bit.

I’ve purchased transfer belts of all shapes and colors, with handles and without handles, to go around her back and to go around the upper back of the carer.

Ms. Lula is not a lightweight girl so after a bit of time, even with the best transfer techniques, it gets daunting on us caregivers.

Because of her condition, she holds (tightly) onto the wheelchair or our clothing because she doesn’t want to fall and can’t properly articulate her concerns.

Ms. Lula sleeps on a very comfortable recliner as do many seniors. We’ve found this easier to get her up and down as opposed to a standard bed. We try to get her up and be a part of the family for as long as she can to keep her stimulated and free from pressure ulcers.

For the past month, I’ve been attempting to get a hospital bed and Hoyer lift to relieve some tension off our bodies. This is where the frustration comes in. The DME company that we’ve been going through (Super Health) is not very responsive, has extensive hold times when you call, and some of the agents are completely rude.

There have been days I’ve called, waited for 45 minutes, requested a callback, they call, put me on hold then the call hangs up. I feel like those folks who were trying to get through to the EDD office for their unemployment checks.

I finally got through today. A rep name Jennifer (who was kind by the way) informed me that although my doctor provided great documentation notes quantifying the need for these items, it was not enough. She said Medicare is requiring the below documentation to support the request. If you look at the request it’s very specific and extensive.

I complained to her (though I know it’s not her fault) and she informed me that this is a requirement for only straight Medicare clients. If my mom had an HMO or a PPO, then this would not be the case. This seems so unfair. Poor people have so much more to do to get good care…so frustrating.

My mom has Medi-Cal (Medicaid in other states) because she was a hard-working woman, never on government assistance, but we were still POOR. Medi-Cal is health insurance for people with low incomes. They have Managed Care plans which are like HMOs but they are not.

She worked at Campbell Soup for about 25 to 30 years and only receives $1.67 a month for retirement. She also receives a small Soc Sec check that if it increases by a few dollars, it jeopardizes her Medi-Cal so I’m always at the Legal Aid Society fighting for assistance.

She was a great mother, so I will do whatever it takes!

If you are caring for a loved one and they have the means to do it, though it’s hard work, please be grateful. If you have local family support, please be grateful. And please get your affairs in order so that if you need care in the future, it will be as easy as possible.

I’ve not been posting for some time because the care is getting more challenging each day. I’m so grateful she is with me. I’m grateful for great friends who support me locally. I’m grateful for family who does the best they can to provide support from a distance. Above is a pic of my niece Janet who’s in the military stationed on the east coast but is completing a class via Zoom here in CA to provide some respite.

This is supposed to be a great week for me (and it is when I pull back and look at the big picture). I turn 50 years old this Sunday. Though I planned for my 50th Bday to be much different than it is, I’m grateful to see another year! I wouldn’t do this journey any other way.

I love my Mommy. If I have to care for her for 10 more years (though I hope that is not the case…just being honest) I will do so proudly.

Thank you for allowing me to vent. This has been therapeutic. I think I cried the entire time while writing and I needed it.

Love you all!

TVaughn