“…promises of the heart…”

This week has been sad, stressful, and educational. LOL. My mom’s Alzheimer’s has greatly increased. On top of the mental issues, there are physical ones, as well. She is having difficulty swallowing. As I documented in a previous post, we had to contact 9-1-1 for her after a recent choking incident. I have been in contact with her doctor and she feels that mom is too far advanced for a “swallow study” because she does not have the comprehension to complete one. So, we are just treating her like a young toddler, in regards to foods we serve her. So much fun. It takes me back, because my baby is almost 20 years old. Trying to be creative with smushed food. Ha-Ha.

For most caregivers of Alzheimer’s patients, one of the most difficult issues is toileting and cleanliness. And when those two things are not done appropriately, it literally seeps into everything else. Their health is greatly affected. Mom is on her 4th UTI in about 6 months. This one is particularly virulent and the ER doctor called us with a change in medication, after her culture had been grown for a few days. For unknown reasons, bathing is an issue with Alzheimer’s patients. There are as many theories about it as there are patients with the disease. And I think I have read them all, or at least people have told me their ideas about it, ad nauseum.

Mom’s UTI is affecting her emotions and her personality. And each time she gets another infection, it reacts quicker and deeper on her brain. I used to care for my grandmother. One time, my kids were playing soccer and I got an emergency call from the police and had to run over to her apartment. She claimed people had broken in and was so afraid they were still in there. So I rushed over there, and a police officer intercepted me before I could get to my grandma. He explained that there had been no break in. Grandma was fine. Nothing was broken or taken. But there was something wrong with her. She was refusing care and was extremely rude to the paramedics and police officers in attendance. They were asking for my intercession. It took me, quite literally, hours to convince her to go with me to the hospital. And once there, they admitted her overnight. And at times, had to restrain her. She had so many UTIs, she eventually died from one, while living with us. There was nothing they could do, because the infection went systemic. UTIs are nothing to joke about. And unfortunately, because of anatomy and a cruel twist of fate, women are far more susceptible. Add to that the propensity for Alzheimer’s patients to be more likely to get them because of their compromised immune systems, and we are slated for failure. Sigh.

It is now the end of September and Fall has arrived. Up here in Alaska, we have what is called, “Termination Dust.” This is what happens when we get a good rainstorm and it is cold enough for the first dusting of snow on the mountain peaks. Usually the dusting of snow stays put from here on out. We get those colder nights, cloudier days, and winter is on its way. The photo above is of Turnagain Arm, just south of Anchorage. All along the eastern side of the MatSu Valley, the local mountains have the Dust, too. It rained fairly well overnight on Friday, and into Saturday morning. And now that Mom’s Alzheimer’s is in full swing, delving even deeper into that rabbit hole, weather has a huge affect.

Mom has PAD, peripheral artery disease, as well as aortic stenosis. It is not good; not horrible, but not good. Her hands and feet are always so cold. Her sense of touch is pretty messed up. Now that days are getting darker and shorter, her mind sees this and stimulates her other senses. Even though we have an automatic heating system my husband has set, and we maintain an average of 70 degrees in the house all the time, mom thinks it’s freezing in the house. She has never wanted to take off her heated blanket, nor stopped wearing her flannel PJs with fuzzy socks to bed, over the summer. For her, it never really warmed up. And now the descent into winter. This is her second winter with us, but she has no recall of that. She sees sun and wants to wear peep-toed shoes with very thin polyester slacks. The other day she did that, even though it was 50-degrees and raining. And today she has added that her coffee cup is too cold to add more coffee, because her coffee would just get cold (not recalling she just drank a fresh, hot, cup of coffee). And each time she goes to get dressed, she is insisting that her clothes are damp. I went to her room, and all of her undershirts were hanging around the room. When I asked why, she told me they were all soaking wet and she did not understand why there were wet clothes in her dresser. Sigh.

And so Alzheimer’s keeps us on our toes. Every moment is different from the last. Mom still naps a lot. She is hard to converse with. We spend many hours in total silence. She says things she shouldn’t to people she shouldn’t. She saves her worst self for me. Someone told me it is because our roles have reversed. I am now the mom, and I am the only one who tells her, “no.” Whatever the cause, the consequences for me sort of stink. And there are days neither my husband nor myself want to be here. We are soul-searching and thinking about what is best for everyone.

Our care coordinator once said, “We all make promises of the heart. And we try to keep them. Sometimes we need to rethink those promises in light of our minds and reasonable thought. And sometimes we need to change those promises to new ones; ones that everyone can benefit from.” She is right, of course. And so, we are looking for other promises, other options, and ways of finding the best route for everyone. Who knows? It may be more of the same. But it may not be.




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