Some experiences are surreal. Last Wednesday I walked into the Urgent Care here in town. People were smiling at me. They were saying “hi” as I walked by. Why, you may ask? Well, my mom is a regular at Urgent Care. Because of her Alzheimer’s, she has pretty regular UTIs. So we go and have her tested at Urgent Care, because it is faster than trying to get an appointment with the doctor. The doctor even suggests we go there. And since I have no regular doctor, I thought of them first when I was feeling quite ill. They were all flabbergasted the appointment was for me, and they kept looking for mom. Ha-Ha-Ha.
But, no, this was for me. Yeah. I posted earlier about stress and Prilosec! Well, the doctor encouraged me to finish the Prilosec, because it seems to be easing my symptoms. My blood tests came back stellar. The doctor told me he was actually shocked at how good my numbers, across the board, looked. He told me, according to my blood work, I am very healthy. Yay! I am overweight, so most doctors assume I have diabetes. I don’t. Sugar was great; cholesterol was great…on and on…it all looked good. Even all the pancreatic enzymes (which is always a concern) looked so good. But I have so much abdominal pain and other icky issues. So, he referred me to a gastro guy for a lovely colonoscopy.
I figured the referral would take forever. Nope. They called and scheduled it the next morning. Wednesday I have my initial appointment. And who knows? Maybe he won’t want to do one. (Praying).
For me, the important thing about this experience is the way in which the ER doctor spoke to me. The entire visit changed when we just chatted, after he had palpitated my abdomen and the entire gastric area hurt. He was chatting so I would relax, and breathe through the pain. I told him I was so late in the day (almost 2pm) because I had to ensure I had someone to stay with my mom. He looked at me quizzically and I explained that I am the sole caregiver for my mom, with late stage Alzheimer’s; that she lives with us and I could not bring her with me for this. (He has never been one of the Urgent Care doctors to treat my mom! Which was unique!) He then walked over to me and gave me a hug. I had never met this doctor before! He then explained that he thinks the bulk of my problems are probably stress-related. He thinks I definitely have something wrong with my intestines, somewhere along the way, but he thinks the stress is making everything worse. He also told me that I needed to care for myself before I could expect to care for others. He also said I need time for me. And that no one should go as long as I have without medical attention (it’s been at least 10 years since I have been to a doctor for general medical care) to assess what my general health really is. He has a point. I tend to be sort of a hippie-styled, prefer my essential oils, and use herbs (not that herb) when I cook and when I choose to treat ailments that come my way, sort of person. I have not been ill enough in my life over the past 10 years, to seek medical attention. I always look at it as the last resort, not the first thing I do. I know people who run to Urgent Care for the sniffles. Nope. Colds go away. If something is broken or I feel like I am dying, I go seek medical help.
So how do we caregivers get a handle on this thing? This daily, 24/7 stress? I worry about everything. Is mom eating right? Will she clean herself up today? Will she make a mess? Will she sleep tonight? Will she wear clothes? Will she argue and be a total Alzheimer’s patient today? Or will we have peace? Have all her bills been paid? Is her account okay? Where did I put that DNR? Where is the POA paperwork? Will mom fall today? What do I need to throw into the washing machine? On and on and on…and that is just the tip of the thoughts I go through…and this is just about my mom. How do I control this????
Well, I had an “ah-ha” moment with all this caregiving stuff. My mom and I had a particularly nasty encounter. Some days are joyful. I have tender memories of our times together, just loving each other. But as this disease has progressed, those moments are fewer and fewer. Instead, she has become so very difficult. She truly has no concept of where she is. She asked me just yesterday, “Where did I come from? Where are my clothes? Why I am here, in my pajamas? Where are all my things? I think I locked myself out of my place. Did you know it is 5 o’clock? Where is my purse? Thank you for having me as a guest at your place. I come from New Zealand.” Her thoughts are disjointed. She does not comprehend much. We used to only watch Steve Harvey on one of his many programs on the TV, because she just would light up when he was on. She now sleeps through even Steve Harvey. She does not watch things like “The Voice” or “So You Think You Can Dance” and other active programs. Her beloved Family Feud has become noise in the background. She will watch the wind blow. She will watch the sun on the plants in the yard, or the clouds skitter across the sky. She watches our dog with such intensity. It is hard, because she does not understand when Poca chews her bones…Mom thinks the dog is chewing on her own leg and gets so worried. And she reports the movement of the dog every few moments. She will not concede that she can hardly see, so we are having to constantly explain what she is seeing. Yesterday, the hubby was working in the yard and she was saying things like, “There is a white car in the backyard (it’s an F-150 Truck) and a man is in it. And…”There is a man working in the yard.” Then my husband walks in the house, asking for some water and she says, “Would you like a tour of our home? It is lovely.” She had no idea it was my husband, her son-in-law.
Our moment came when mom strode with purpose into her room. She was already angry about something. I followed her in and asked her what I could do to help her. She said, “Oh God, I hate this place. I hate this room. It is so damn hot in here, it is like a sweatbox! I work all day long and have been so busy and it is just too damn hot in here. I hate living here. I hate this place.” Well, I probably could have responded better. Ha-Ha. You see, mom has been cold since she arrived in Alaska. She was given an electric blanket for Christmas and has it on full blast at night, wearing flannel pjs and socks, along with 2 blankets, flannel sheets, and a comforter, in August. Sigh. So, we bought her a room heater. We had it on low, and automatic. So when we entered her room, the heater had just shut itself off. So, I gathered her laundry and the space heater, and left the room. She said some pretty hurtful things that I won’t share here; suffice it to say, my heart broke in two. As I hurried from the room, my stomach broke out in the hottest, searing pain, causing me to double over. I went into my closet, bent over in pain, and just wept.
And yes, it was an ugly cry – the ones with snot and sobbing and red, swollen eyes. And as I wept, I said to myself, “I am done. I cannot do this anymore. I am sick. My mom is slowly killing me.” It is time to move my mom into a memory care facility. And I contacted my care coordinator right then. She has been trying to gently nudge me into this mindset for months now. She has been with my mom and has seen her treatment of me, up close and personal. She believes, that with our family dynamic, placing mom in a memory facility would be the best option for both of us. And after talking with my family, they are all, across the board, 100% in support of the move. Most of them expressed shock that I lasted as long as I have. And even though mom has no idea of where she is, moving her is going to be fraught with drama. Because we are all around her, all the time. I am her anchor. When I am not around, she is constantly looking for me. And she is unsettled when I am absent. If I go to the store and am gone for 1-2 hours, she greets me like I have been gone for days. And she relaxes when I get home. So moving her away from me, in amongst strangers, will be hard for me, and for her.
Many caregivers are blessed with being able to keep their loved ones at home with them, until they literally pass away from complications caused by Alzheimer’s. And many never bring their loved ones home with them. Ever. They only, and solely, deal with memory care facilities. There is no rule of thumb. There is no perfect way to do this. Each person experiences Alzheimer’s in their own way. And each family is completely unique. So, for others, placing their loved one in a facility is out of the question. And for yet others, having their loved one at home is beyond their imagination or capabilities. We have tried it with mom living with us. And it is killing me, slowly. For our family, the trick now is to find the perfect fit for mom – one we are all comfortable with her living in. I am calling places; places she will be comfortable in; a place where I will be able to return to being her daughter, and not her caregiver.
You know, it is healthy to know and realize when something has beaten you, and you need to re-group, and change directions. It is humbling, because I feel like a failure in many ways. But I also realize I have a Mission Field. It is my faith. It is my husband. It is my family. And it is the myriad of friends I have gathered around me. I now realize that I have become so isolated from them. And I am so not done living, yet. As I type this, my daughter-in-law is in labor with their 4th daughter. And I love her so much already, but I NEED to hold her and tell her I love her. I need her to know her grandma. I am not done, yet. (An homage to my husband). And so, we are redirecting this Alzheimer’s train. Deep breaths. I can do this, too. God has got my back; I know it. Praise be to God in all things.