November was a difficult month for many people. So much to say about that, but I restrict myself to the focus of this blog. At the beginning of this month, Mom’s assisted living facility informed us that it was time for Mom to move to a board and care. Her needs exceeded their services even with the additional aide we paid for. In the interim, they wanted us to provide a caretaker to help the aide with her. Yikes! How were we going to meet the financial challenges?
My siblings agreed with my proposal to move Mom down south near me. It’s far less expensive than where she is. I’m retired and can visit her every day. And, it gives my younger sister a long overdue reprieve from bearing the brunt of caring for Mom. That included eight years of having Mom live with her and my brother-in-law!
However, if you decide to move your loved one to another area, keep in mind that travel is difficult for people with dementia. Air travel is faster, of course, but think about the time it takes to get to the airport, go through security, wait for your flight, and then disembark at your destination, collect your luggage, and then travel from the airport to wherever. That is a lot of changes for someone who is confused. If there are health issues that can be affected by high altitude, that is another consideration. And finally, getting to the bathroom on a plane is not easy even for someone who is ambulatory. How would two people fit in those tiny closet “bathrooms?”
We chose to travel by car, which had its own drawbacks, but at least it didn’t cost us a small fortune. (See the section, “The Trip,” below.
Finding a Caregiver
Surprisingly, it was more difficult finding a caregiver than finding a care home near me. (Click here to read my post “Choosing a Care Home.”) Agencies were either too far away from Mom’s facility or too expensive. Way too expensive. We finally decided to just hire someone ourselves rather than go through the agencies.
I searched online for caregivers, conducted the initial phone interview, and then passed likely candidates on to my sister. She then set up the face-to-face interviews. We found an awesome woman and promised the assisted living that she would start on a certain day. Unfortunately, that fell through when a personal emergency in her family caused her to back out. We moved to the next person on my list.
Pressure to Find a Caregiver FAST
In the meantime, my sister received daily calls from the assisted living facility reporting new problems with Mom. She wasn’t eating. Next, it was that she was spitting up her Ensure. Now, her ankle was swollen and bruised. Worst of all (for them), she wasn’t supporting her weight any more. When was a caregiver starting?!!
My sister assured them we found a place for Mom to move to and were working on the required physician’s report, TB test, etc. to get her moved as soon as possible. That gained us a few days of patience. However, we kept losing caregivers before they could even start. It got to the point where my sister dreaded showing up at the facility as each promised start date passed.
At last, success. At least we thought so, but Mom’s facility nipped it in the bud because we didn’t have workers comp for the caregiver. Who knew? They told us we could hire whoever we wanted, but neglected to mention that detail. We gave up, re-contacted the expensive agency, and hired someone for the duration which was up until Thanksgiving. The cost was astronomical. We told ourselves we would recoup the money over time as the new care home would cost half of what Mom was paying for the assisted living plus the part time aides (before even adding in the caregivers).
Health Scares Jeopardize Our Moving Plan
In the meantime, there were health scares with Mom. As I mentioned above, we were told she was spitting up her Ensure, but the aide neglected to notice there was blood in it. When my sister did Mom’s laundry, she detected the blood on Mom’s sheets. My sister immediately made an appointment with the doctor.
The next thing my sister knew, Kaiser calls her not about the blood, but about Mom’s swollen ankles (plural). It had been ten days since the facility advised my sister about one ankle being swollen and bruised. We speculated at the time that Mom tried to get out of bed on her own and hurt it. The facility never clued us in that it was both ankles, which suggested a much different cause.
We worried that Mom had congestive heart failure or something else. My sister expected to be rushing her to the hospital. We sent alarmed emails back and forth. I wondered if Mom was even going to be well enough to move.
After seeing photos of the ankles, the doctor thought it was not an emergency. She decided at Mom’s subsequent appointment that it was a result of Mom’s age and now being wheelchair bound. She recommended elevation and compression socks. Given that no more blood appeared in the spitting up episodes, that scare was downgraded, as well. Mom seemed to have difficult swallowing, so we did not feel completely relieved. However, we were back on track.
The Veterans Administration Provides Care Benefits for Spouses!
My third project all November was to pursue Veterans benefits for Mom as a spouse of a veteran. Unbeknownst to us, Mom had been eligible for what is called Aid and Attendance benefits to the tune of 1150.00 a month for the past three years. We missed out on all that money! Now that we had been tipped off, I got that process going, as well.
IF YOUR LOVED ONE IS A VETERAN OR A SPOUSE OR WIDOW/ER OF A VETERAN, PLEASE BE SURE TO CHECK OUT THE RESOURCES SECTION. Resources
By the skin of our teeth, we managed to get all the paperwork done in order to move Mom over the Thanksgiving weekend. My brother and his wife drove out from Idaho. Fred and I drove up from Southern California. My other sister popped over from the Bay Area, and we all converged on my younger sister and brother-in-law.
The day before Thanksgiving, my sister and I conducted a secret special op while Mom was safely occupied in the dining room. We hauled bags of her clothes, some photos, a few knickknacks, her walker in case she was ever able to use it again, and her companion chair down the back stairs and stuffed it all in the trunk of my car. Both of us had foot injuries, and it was hot to boot. (LOL–foot/boot. Never mind.)
I told Mom on Thanksgiving that the next day we were going on an outing. We were bringing her down near us so she could visit with us and see our new house. Yeah, yeah. It wasn’t the complete truth, but she wasn’t going to remember what we said anyway. However, she would remember that she was going “out.”
The day after Thanksgiving, Mom, my husband, and I set off on the 7 1/2 hour trip south, leaving everyone else to move her furniture and belongings out of her apartment at the assisted living facility, clean it, and complete the moving out paperwork.
Good-bye to that three-year phase of Mom’s life.
I won’t lie, the trip was not easy. It was an ordeal to deal with the bathroom stops and support Mom’s weight while getting her pants and Depends down and up. Both times she peed on the floor due to the fact that she now starts peeing as soon as she gets within a foot of a toilet. I was in a sweat after each time. The next day, not only were my neck, arm, and back muscles sore, but I also couldn’t bend or turn my wrist for the first couple of hours.
But the real trial was the psychological warfare. Mom kept up a running conversation loud enough for us to hear the sibilance and murmurs, but never loud enough for us to actually understand what she was saying. I wanted to scream at her, especially as we descended the Grapevine on Interstate 5 and entered the L.A. basin with about six freeway changes to accomplish in crazy traffic. (Click here to read the post, “Mom Stopped Peeing on Me. Thanks, Care Home!” It describes an example of what Mom is actually saying. In this case, it’s a bit disturbing, as in “paranoia strikes deep.”)
Somehow we all arrived alive at her care home, although more than an hour later than I expected. The clever staff gave Mom ice cream and introduced her around. This gave us time to unpack enough of the car to make sure she had pajamas and a change of clothes for the next day, to check in her medications, and to let the staff know that she had eaten no breakfast and only half a spoonful of yogurt and a tiny sip of soup for lunch that day. (I don’t want to talk about the restaurant stops.)
By the time we were done, Mom was happily chatting with her new roommate. We let her know we would see her in the morning. There was a moment of panic in her eyes so another explanation of where she was and additional reassurance was in order.
My husband and I left her with fingers crossed that she would sleep well. We were barely speaking to each other due to every last nerve being stretched. We were completely spent and grateful that it was only a four-minute drive to our own home. My husband poured himself a stiff drink while I got out of my sweaty clothes and took a shower. The only thing we unloaded from the car was a care package of leftover Thanksgiving food that my wonderful sister gave us. Without it, it would have been cheese and crackers for dinner because we had no energy to prepare anything.
Three days later,* I am delighted to say that Mom is happy, eating, and sleeping all night. She thinks everyone is “so nice.” Her roommate is thrilled to have her, and Mom isn’t alone at night. I see her every day. I mainly bring her to our house for three or four hours, but one day I just visited her and the other residents for an hour and a half. Every time I take her out, she thanks the staff for their hospitality and says how nice everyone has been as if she is not coming back. It’s pretty funny. It was a herculean task, but the result definitely seems to be a success.
And that is how I spent my Thanksgiving weekend.
I hope you can see from this post that there are many factors involved in meeting financial challenges and that decisions need to be made faster than you are likely to want to make them. So it’s a good idea if you can look ahead and imagine what your plan will be if your loved one needs more care and/or needs to move. Check out the resources available to make sure your plan will work. If possible, explore a Plan B and a Plan C. Consider possible surprises. We did not expect to be asked to provide a caregiver in addition to aides while Mom was in an assisted living facility. We thought she would either be there or move to another facility. That unexpected demand caused us a lot of stress, work, and expense.
* I wrote this two days ago during a four-hour wait at Urgent Care and the Imaging Center because of a swollen and bruised foot. It’s taken me this long to type it up what with all the “To Do’s” associated with the move, spending time with Mom, and reduced energy due to a well-timed cold. My sister went through all this plus hauling Mom into Kaiser and clearing out the apartment with a broken ankle while hosting five people in her home for 2-3 days, plus Mom on Thanksgiving. Are we glad November is over? We are definitely giving thanks.