When I first realized this living arrangement was coming at me like a runaway truck, I started laying the groundwork for aid. The Alzheimer's Caregivers Support Group has been there with a listening compassionate ear, excellent resources for help and invaluable education. The hot line got me through more than a couple of bad days. This free lifeline has never failed me. Alz Hot Line
Plan A: Mom would live at my house half the time and my sister would take her the other half. Her animals would live with me and her furniture and "stuff" would be split between the two homes.
My sister realized before the truck was packed she could not do it. Her own family was already impacted by her husband's emerging memory issues and the very thought of adding one more thing overwhelmed her.
Plan B: My daughter, a year out of college and working at a nursing home, would continue to live with us, help with mom and all the critters and stuff was sent to my house. Mom would go to the senior center sometimes, would take care of her self during the day and I would be there to to be back-up. My husband would continue on as if nothing had changed but our privacy.
Before mom had been here two weeks my daughter packed up and moved in with her boyfriend, 45 minutes north, changing her support to three nights a week. Mom would not even go into our local senior center because it was in an industrial building, tried the senior center in the neighboring suburb a couple of afternoons over about four weeks, and quit because the people were "mean".
Plan C: Mom irrationally hated the senior minister at my church (where I am one of the ministers myself) and could not keep her mouth shut about it. I could not take mom to church with me.
At first it was asking for my sister to physically take mom for Sundays so I could work. She agreed to take mom one Sunday when I was scheduled to be in the pulpit and needed help. That day she decided to take mom to a different local church. Mom loved the church, which met at the same time my church was also meeting and for the first time since moving in mom had friends. My sister agreed to come down and take her to church every week.
She tried and for the first 18 months she took mom to church a total of three times. She could not keep that commitment and a member of mom's church has been picking her up and taking her to church each Sunday since.
Plan C2: Then I asked for in home help so I could continue to work during the week. Mom was not eating and needed someone home for meals and she really wanted someone to do her laundry besides me. I hired first a couple of individuals, both of whom quit after a few weeks, and then an agency to help mom at home. Through the agency we had several good and several not so good women come in and help. We started with just a few hours a week on a couple of days and as mom's health and cognition deteriorated we upped the caregiver hours. I in turn upped my hours working at the hospital where I could actually make some money to help pay for all this.
Why? Caregivers were making more than I was. BUT MOSTLY SNOW. Our caregivers consistently were "no show" in bad weather. As a result, I would not be able to get to work and being trapped in the house with mom was driving me crazy.
Plan D: Once more, a change of plans. We found a Private Pay Daycare mom was willing to go to. They were open early and late enough that I thought the hours were doable. People there were kind and caring. It was looking good. Mom was less bored. They were always there, even in bad weather. We did a mix of at home with private pay part time caregivers and two days a week at daycare. This was working pretty well for the rest of the academic year. By summer, things continued to deteriorate. All of the beloved and reliable caregivers eventually left because they could not make a living wage working part time. They were not easily replaced.
Mom quit being cooperative. She was getting too tired and there were no higher functioning demented people at the DayCare so she was declining. Her Caregivers were constantly changing which she found disorienting. And she ran out of money.
Plan E: Mom graduated to Medicaid and now our sources for help changed. The agency I had been using and the daycare facility mom had been going to were private pay only. We switched to new agencies and sites so that her depleted funds would go further. With that change came many more... New caregivers, new layers of care (a nurse and case manager added to the mix). And then a second layer..another case manager and another nurse. Now the last of my private pay "hold out" caregivers joined the exodus. With the government footing the bill their take home pay was cut for the same amount of work. We experience lots of loss and more chaos, and ultimately, less help. With all these people I feel more alone than ever. Everybody is trying, they all love my mom, BUT...now I have only 10 hours of in the home care a week, (We had built up to 30 hours) That is all that the insurance will pay for and the rest, if we want it, must come out of our own pockets.
Plan E killed my ability to work outside the home. I began to get more and more isolated in the ever changing crowd of caregivers,nurses, caseworkers, social workers and salespeople seeking to sell me a better deal.
DEPRESSION ULTIMATE FAIL!
Whenever I finally fall apart, the person who always promises but consistently makes things worse comes back.
Super sister to the rescue: She joined me to tour one of the ten assisted living places I viewed, and when my assigned caregiver didn't show up when I had a final appointment scheduled, she went on the appointment instead of me. I saw four with one of my friends, one with my sister, one with my husband. I made all the appointments. I spoke with and interviewed seven more that I chose not to tour. I regularly network with several "helping" organizations and their assigned rep. I have not left the house except to seek a place to settle mom since the end of July. I have had five days not taken up helping mom all summer. Three of those were entertaining my in laws and one more was helping my daughter pack for still another move, even farther away. There are currently 19 post-it notes of people I need to speak with before the weekend glued to my coffee table.
AUGHHH! so next?
NEW PLAN: Plan A+ Mom lives here with her animals and her stuff. The ten hours of help from the government continues to come (when they show up) to help her bathe and light housekeeping. She goes to Medicaid funded Daycare twenty minutes away four days. I give up the ability to work full time, ever. On the weekend she goes to live at my sisters house so I can work Sundays. Mom loses her church. My sister loses her free weekends. I lose my mind. And we still have to pay out of pocket for any extras. It is a sad state of affairs.
Please Grimelda, help my sister to stick to the plan this time. Help mom and me to adjust. Again.
I need more trees and less sand. I need more flowers and less compost.
I just want to go sit with dying people and their grieving families again. This care-giving is just too hard today.
Amen, Amen, Amen