We all have responsibilities. And they extend out into our web of relationships. Sometimes they are family oriented, other times they stretch into our work life or social life, or service in our various communities. And sometimes they stretch so taut, we feel bound to them. I am feeling bound. I am feeling taut. And sometimes I want to break away. But I cannot. Why? Because I chose these responsibilities and if I walk away from them, I am not worth my word. We give our word to others, and that creates these responsibilities. Sometimes we take on far more than we should, because we cannot seem to say no to people, and we cannot keep up. Other times, things we have agreed to become much more than we expected. And that is where I am, today.
My mom and I were never really close. I moved out as soon as I could, at 17 years old. I wanted to be as far from my parents as I could get, yet still within reach. I went from living situation, to living situation. Roommates, living at my sorority house, even living with my brother as two adults. But once I left home for good, when I was 21, I never again lived with my parents. When my folks divorced, there was no home to return to. And I was 22 at the time. Mom and I did not move in the same circles. And my dad had remarried pretty quickly, so he was off in his own world, and rarely intersected with mine. The years went by, and mom fell in love with the love of her life. They traveled and lived all over the western half of the US, from Long Beach on their boat, to Utah and Arizona, and finally back to California. In the meantime, I was married and having my babies. Mom and I intersected on holidays and summer visits. But we did not speak daily, or even weekly. And it is the same with my dad. So when I chose to accept the responsibility of having my mom move in with us, I did not fully understand or comprehend what I was agreeing to.
Alzheimer’s is a rough disease. It is rough on the person who has it, and all those around them, who love and care for them. I thought I was up to the task. But my mom and I danced around one another and it was not a dance that was coordinated and it soon fell apart. Mom and I had not lived under the same roof for more than 40 years. She did not recognize me as an adult married woman with grandchildren. She just saw me as this teenager she had to control. And I was expecting more of a mother than my mom could be. It was not a good fit. And if you add in all the personality issues associated with Alzheimer’s, we were doomed to fail. Some days if all I did was breathe, I considered it a successful day. And mom, if she moved off the couch and could toilet successfully, well, that was a banner day. If she actually dressed and showered, it was like Christmas. She slept all day. She had no interested in anything. We tried. Crafting is not her thing. She had no interest in interacting with others her age (“Why would I want to be with all those old people?” she would constantly say). We were at our wit’s end. Our care coordinator asked me to consider placing mom in an Assisted Living home. God, I felt like a failure. I had raised three successful sons to adulthood. And I just could not manage this 89-year-old woman. At my rope’s end, where the safest space in my home for me was my walk-in closet because mom could never find it, I placed the call. I started looking for a place for mom. And because, I believe, I approached it with prayer, we found the perfect place for her. God answered our prayers.
Mom has been in the Assisted Living home since the end of October. It is now March. The transition was ugly, but she adjusted fairly quickly. Huge explosion. Over quickly. And we also took her off all her Alzheimer meds at the same time. She only takes an antidepressant and daily vitamin. She has been doing well. It is like she got her second wind. She is laughing and the life of the home. They all love her there. But her Alzheimer’s has progressed. At her last doctor’s visit, she told me mom was in the final stages of Alzheimer’s. We cannot know how long she has to live, but her mental state is declining quickly. Mom’s stubborn personality, and her sense of who she is, is interfering with her safety. She is refusing to use a walker. She has now fallen twice within the past 60 days. The first time, she broke her nose. This time, she broke one and possibly two, fingers. She also cut her hand, which needed stitches. But her skin is too fragile for them. The stitches are stronger than her skin and pull right through the skin. So she had to have steri-strips and bandages, along with a glove and brace.
Well, mom pulled off the bandages, lost the glove and brace, and her wound opened again. The Assisted Living staff placed Tegaderm on her skin. It is a clear bandage that is like “saran wrap” with adhesive for wounds. It is great for younger skin, but in the elderly, when they pull it off, their skin comes off, too. But we have little else we can do her her. And in a bizarre twist of fate, the wound seems to be healing just fine. However, she refuses to let things alone, and refuses to use her walker. And part of that is because when she looks in the mirror, she sees her 20-something self, and not my 89-year-old mom.
And now that she has had two incidences in the past 60 days, local agencies are noticing. And for that, I am very appreciative. Because most of the time, we think these agencies are so overwhelmed, they do not noticed each person in their care. So, on the one hand, I am very grateful. Her care coordinator had me sign some release of information forms and she is now able to intercede with these agencies on mom’s behalf. And it is allowing us to stay ahead of deadlines. Recently, one of her care providing agencies (which I will not name) sent me two notices. They both said they were second notices, and they both had past deadlines. To say I panicked is putting it mildly. Because when I took on the responsibility of my mom, I needed to fully realize that I am it. There is no one behind me. (My husband, but he is not responsible for my mom, just for my sanity with his continued support). And I realized that if all this paperwork were not completed in a timely manner, it could literally mean my mom would have to live with me once more. And I realized that I just could not move her back in with us. My sanity has just started to settle in, and I am once again feeling me to be me. So the thought of my mom living here again sent me into a major panic. I was not sleeping. Literally. I was barely eating. I was an emotional wreck. I had to contact people and play phone tag. I had to gather an inordinate amount of information in just days. Thankfully, I am one of those people who keeps copies of everything I send out. So I was able to dig through mom’s immense stack of paperwork and find information I did not realize I needed, or had previously submitted. I finally had to walk the paperwork into this agency. They proceeded to stamp it received, looked into her status, and told me everything was fine. Everything was in and it looked great and for me not to worry. So how did I react? I stood there, in this public agency, at the counter, and just wept. The tears rolling down my face. I felt like an idiot. But I had seriously been on the verge of a nervous breakdown. I was holding all that inside and did not even realize the huge pressure that had been on my shoulders. They were so kind, handing me tissues, and assuring me everything was okay. And two days later, my care coordinator called to confirm she was approved for aid for another year of care. Thanks be to God.
So now, things are settling. And this agency is requesting a review. The timing stinks for me, because I am having to cancel plans I had made for travel and some events (I am so sorry) I will be missing. But I am also grateful they are paying attention – for my mom’s sake. But here is where the rub is – I am the sole responsible party for my mom’s welfare. I am her POA (Power of attorney) and the only one who can legally represent her with these agencies. Her care coordinator stands with me, and she advocates for her, too. She speaks their language and understands all the myriad of forms they throw at you, and she knows how the system works. That is a wonderful thing. Long term care for the elderly is not something anyone should take on without being fully aware of what that really means. And the fullness is now hitting me. And it is so very different than taking on a new child or baby. It is just different, because I think it partially has to do with role-reversal. I mean, moms are supposed to care for their kids, and not the other way around. It is tossing our relationship up into the air and the pieces are falling all over the place. And it affects everything else in my life. Everything. I am hanging on by a thread.
Once upon a time, mom took care of me. And now I am trying to take care of her. In the meantime, I need to take care of myself. I have cautioned loved ones that if you give too much to others, you have nothing left for yourself. This is a harsh reality. And every once in awhile, we need to admit we cannot be in more than one place at a time, nor can we continually say “yes” to every request of our time, treasure, or talent. We sometimes have to say “no” and just take care of ourselves.
The Lord gives us Lent every year to reevaluate ourselves – our lives and the way in which we allow things tp pull us. And I am taking this time to say “no” more often. No to things, to events, to places I am asked to go. Because sometimes all I can see in my cup is barely a drop. To quote from the Lenten study I am participating in (“Songs of Praise” by Sylvia Leontaritis), “Every so often I like to sit down and examine my life and the things I allow to take up space in it. I discover activities that don’t really need to be there, for the simple fact that they don’t contribute to anything needful.” And that is more than true in my life. What do I allow to “take up space in it”? There are basic needs and responsibilities I need to attend to. But I am deeply pruning my responsibilities and activities. And it makes me healthier. All the way around.
So when we say, “yes,” to things, we need to dig in and make sure it fits into our lives, is able to be fully supported, and is something we truly want to do. Because sometimes, there is no going back. We have made commitments and we need to honor them. This Lent, I am realizing there are things, situations, and people I can walk away from. There are things I cannot. So I prune where I can, and water what needs my attention. Spring is on the way…what will the future hold? Where will our time be spent, and with whom? We only have this one life…what will we allow to take up space in it?
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have you considered compiling all these entries and writing a book? It would be so helpful to other people facing the care of a parent/family member with alzheimer’s.
I have. But have no idea where to even start!!! 😂
will do some research on it. Don’t know either but i’m sure it can be done.BTW thought you might be interested in this article. Aletia is a Catholic source. https://aleteia.org/2019/03/22/how-music-can-bring-those-with-alzheimers-back-to-reality/
Thank you!!!! 💜💜💜