When my mom arrived in Alaska last September, she came with just a little money, her suitcases (there were 9 of them!!) and her smile. But she had no assets. Which means she qualifies for assistance. She is a Medicare/Medicaid recipient. There are so many people out there calling for a reduction in the money spent by these programs, because there has been so much fraud, waste, and abuse. I totally get that, I really do. I worked in a welfare office and I understand how government payments work, how benefits are assessed, and how the application process works. I understand how cumbersome and ungainly governmental application processes can meander on, seemingly for months – I managed them through our clerical workers, having the approval/denial stamp in my hand. I saw so much abuse, uncovered countless cases of welfare fraud, and was so frustrated by the entire system, that I eventually quit working for the welfare department. So I came to the application process with our local Medicare/Medicaid offices, and the amazing advocates who work for our seniors and disabled citizens, with eyes wide open.
My mom is sinking ever more quickly into her rabbit hole of Alzheimer’s. She believes she is still the quick-thinking, very competent woman she has always been. But there is very little mom can actually do for herself. She can dress, but it is a long, long process. She can no longer discern color very well, and so choosing matching clothing is arduous for her. It exhausts her, so she prefers to just stay in her pjs all day. Mom is also not as steady on her feet, and seems to tip over easily, making dressing difficult. She has also started to shuffle her feet when she walks, and shoes are such an issue for us. (Thankfully I got rid of her heels and peep toes months ago). Mom no longer remembers to use soap or shampoo or toothpaste. She thinks getting wet means clean. She can remember her eyebrows! Which tickles me to no end. (Yesterday she had two on her right eyebrow! When she was trying to be serious, it was difficult not to giggle). She cannot cook. I asked her last night what dressing she wanted on the salads I had made for the two of us. She had no idea what the words meant, looking at me very confusedly, saying, “Just put one of them on there. I don’t care. I’ve been eating salads since long before you were born.” Not sure what that last statement had to do with anything, but I am learning it means she is lashing out because she is confused, it angers her, and she cannot verbalize it. Like I said, Alzheimer’s is a rabbit hole.
Part of the process of caregiving is, quite honestly, finding some help. Caring for an elderly family member with any of the dementing illnesses is probably the most stressful thing you will ever do. There is so much more going on than just caregiving. You enter this disease with your loved one; it is like you are both diagnosed. In my case, this is my mom. She and I hadn’t lived together since I was 21. And that, my friends, is 40 years (okay, a little more this year! LOL!). A lot of water under the bridge. So not only is learning to live with my mom again rough, I also have family members adapting in the same house, too. And to top it off, mom has end-stage Alzheimer’s – that in and of itself is difficult. Now add the family dynamics at play. And some days, if I get dressed and everyone is fed, we have had a good day. Some days, meals are on the fly and I am still in my jammies, having followed the journey of my mom all day long. There are days when, if she cannot see me every minute, she goes into full panic mode. Last night, as I was helping her dress for bed, she commented about wanting to go to the beach or some place she was familiar with from years ago. (During the afternoon, she spoke about me going with her to her cousin’s farm in New Zealand. I have never been to NZ). And when I told her she lived in Alaska, she asked me where that was. I cringed inside, and told her it was a place where she could wear flannel pjs all year round, and still have her electric blanket set as high as it can go, in August. And as I turned out her light and shut the door, I barely made it to my own bed, completely exhausted. Mom had been so cranky all afternoon, treating me pretty poorly. But I knew it was fall out from our afternoon meeting, where we were putting together a “plan of care” for her. And she was not happy about it.
We applied for all the programs we could get. Some we did not get. Some we did. Some ran out before we could fully use them. But one thing I became aware of, is that our government has a lot available for our seniors and our disabled. We just need to plug into it. I completely and fiercely believe that those who are entitled to assistance should not be denied the assistance. Mom has paid into the system for the past 65 years. And I think she is entitled to the help, now that she really needs it. I also just as fiercely believe those who abuse the system should be punished, leaving more for those who qualify and need it. I am not justifying, just explaining. Mom qualifies for assistance in the home and I am beyond thrilled. I feel blessed. I am exhausted. Mentally, emotionally, and physically. I am finally getting some help. Family helps, don’t get me wrong, but even when they help, no one is getting a break. Mom does not remember we had breakfast today. She does not know where she is, what day it is, or what she is looking at. I put on programs thinking she will like them, and she promptly falls asleep. She does not respond to me when we are trying to accomplish daily tasks, and will put on her mom hat when I am trying to cajole her into bathing or dressing or toileting. But she shows off for strangers. She proved that the day we had her State assessment. She literally jumped onto her bed and posed in a very provocative way, to prove she was able. Most nights she requires my assistance to get herself into bed. Ha-Ha. She is quite the social person! Her physicality is strong, but she is very low functioning, cognitively. (She pretty much failed the cognitive portion of her State assessment). And so we planned for her care yesterday. And she fought us. She does not want a stranger around her. She was pissed off the entire day. But, we all need the assistance. I need the assistance. My family needs a break; my family needs me! My friends miss me. I miss me. And I think this will help energize mom in ways she does not realize she needs. One of the things we are scheduling is the “Memory Cafe.” It is a place she can go where she can hear music she knows, and talk to people her age. She previously said she doesn’t want to be with old people, but lately she has said our life is so quiet at home and that she would like to get out more and talk to people her age. We are hopeful the Memory Cafe will help. She will be able to have her caregiver (which will no longer be me) take her for mani/pedis or haircuts; out to lunch and shopping; to senior center programs and other activities she may desire to be a part of.
This journey is fraught with tension and fear, and daily doses of frustration. And now, with this much needed assistance coming our way, some of that frustration will ease off for me. There will always be fear. Mom had a rough day yesterday and she was exhausted. The fear of change is hovering over her and I think she knows change is coming, and so she is tense and rather testy. And underneath all her gruffness, of which I am fully aware, is an old woman afraid of things she does not understand. She could not follow our conversation at the table during our Plan of Care meeting, and even though the wonderful advocates who fight hard for mom tried to include her, she sort of dug in her heels and said she didn’t want it. Thank goodness I was counseled to put things in place earlier, so the final decision for her care is mine. But I really believe this is for her best. And I know it is for my best. And I am praying she will adapt and be happy. She will get someone dedicated to her care alone. And she will get out into the community. And we will enhance her assistance as she falls deeper into this ugly, ugly disease. Having this plan in place allows for a further dive into Alzheimer’s. The program is encompassing and very full. There has been thought put into caring for our disabled and elderly. And I am ready for mom’s life to be made better through the assistance she will receive. We all feel surprised and excited at how truly full this program is, and blessed mom was approved. So, for me and the family, it truly is like Christmas in August!! Maybe I will make cookies….