NAZADA News and Updates

A PRAYER JOURNAL – Number one of two, by Bruce Maloof (name changed for anonymity), a caregiver.  Lord, I haven’t written a prayer journal for a very long time. We both know why. You probably know more of the why than I do. In many ways I don’t know how to journal or pray when it comes to the main terror in my life. Sally, my wife of more than 50 years and counting has Alzheimer’s disease. That disease has been affecting her abilities and memory for 6 years now, or at least our awareness of it. It is progressive. If caught and understood early, the symptoms might be delayed by diet and lifestyle changes. But the knowledge about these changes has come too late for her. She has crossed over to the assessment that the disease is terminal. She will eventually die of it. The hardest part of this disease is that it is progressive. It takes little bites out of brain function. A lost function here and a lost function there. A lost memory here and a lost memory there. First it is short term memory and not being able to do tasks that take multiple steps to accomplish. Then it takes away words of things. It takes away one’s own history, first short-term memory then the memory of one’s past. With short-term memory compromised it takes away the ability to drive safely. One can remember the mechanics of driving but not the immediate environment around the process of driving. It takes away one’s ability to function in the complicated world of cellphones, computers, remote controls, microwaves, electrical switches, etc. There is the loss of where things are, where to find things, or where to put things be it kitchenware, refrigerator, freezer, pantry food, or clothing, and a whole variety of household things. There is the not knowing what, how, or when to feed the dog, or maintain food for the birds, etc. It eventually takes away the basic life skills of preparing a meal, knowing what to wear or when to change clothes. One forgets to take a bath, brush their teeth, drink enough water, comb one’s hair or put on make-up. Slowly there is the loss of knowing how to take pills, how to eat with spoon or fork, or where to go to the bathroom. I tried for days to get Sally to poop in a tray using a porta-potty with no pee. I put signs on her toilet in our master bath, “pee only here,” and a sign on the porta-potty “poop here.” Then I taped all the other toilets in the house shut. I needed the poop sample to send to a lab for gut analysis. She couldn’t do it. There was no way to make her understand what she had to do, poop one place and pee in another. I finally gave up. When a person gets to the Alzheimer’s stage Sally is in, they need 24/7 supervision. Leaving her alone can be dangerous. Her safety is at stake. And her own sense of being alone and not knowing what to do or where anyone it can be very frightening. People with Alzheimer’s disease become dependent on others to fill in the functions of living that they can no longer do for themselves. This is where I come in. I have been and continue to be her primary caregiver. I am probably not the best caregiver because of my lack of training and innate lack of basal right brain dominance. I know that I need counseling in a variety of ways. I have no one to talk to about my roller coaster emotions, frustrations, worries, and decisions that must be made. I know I need help but don’t know where to find it. I cry! If I let my true deep feelings of the loss I am experiencing as Sally declines, I break down and cry! Nobody like a cry-baby. Men don’t like to see another man cry, especially in a group setting. Buck up – be a man is the message. Yet they don’t know what it is like to experience your wife, your companion, the love of your life, in all of what has made up her person and her abilities slowly, tortuously disappears. Sally has become a stalker and shadows me everywhere. She never wants me to be out of her site. As she doesn’t remember her yesterdays, doesn’t know what is happening in her todays, even though I write the day and its activity on a white board in the kitchen, and she doesn’t know her tomorrows. Life for Sally exists in the ever present now. The concept of time is lost. Thus, when she feels the need to know something she asks. With words gone, sentence structure is messed up. I often can’t understand the question. When I do, I mostly answer. But very often, not always, she can’t remember the answer for even a few seconds. So, she asks again, and again, and again, and again – which is very frustrating and tiring. So here I am Lord. I have tried to discover ways to help Sally; progression from Alzheimer’s to slow down. I have had no success. I may have slowed the progression down a bit, but that is hard to measure. The latest research and information reports that the progression of Alzheimer’s disease might be slowed if it is caught early enough. Things such as lifestyle changes and diet may help for to mitigate some of the symptoms. Sally is in the later stages of Alzheimer’s disease according to the latest cognitive evaluation. So now what? Do I keep trying and see if there is any possibility to improve the symptoms of the disease? Or do I say it is time for us to go into a care facility where life is much easier to manage? For most this wouldn’t be a hard choice to make. A house is just a house. To make life easier, downsize is normal and natural. But it is a little different for me. It is not just a house. It is very a unique and beautiful home. Together we designed and decorated our home. Yes, Lord, I am very proud of our home. I enjoy its aesthetic beauty. Our home represents me, who I am, what I have been. But it is big and too much for Sally in that it has too many rooms, functions, and stuff. It breeds confusion in her. Yet, she too, doesn’t want to leave and go into the unknown, unfamiliar care facility when presented with the possibility. So how does one make the decision? If I force myself to be realistic, the decision to move Sally into a care facility has mostly to do with safety and socialization. Living where we are is beautiful but can be too isolating. Sally sees only me and a hired caregiver for a couple of hours weekdays. I think one of my biggest questions is where you come in, in the context of Sally’s disease. Somewhere along this journey I have gotten the idea that you are not going to heal Sally of the disease. That you will just let life take its course as we are all mortal anyway. We are in our late 70s. Sometimes I think you are testing me for patience. I pray the fruits of the Spirit described in Gal. 5:22. Alzheimer’s disease challenges nearly all aspects of them. I am a flawed, fallen human being. I am so well aware of that. I am most definitely in need of a savior. At this point Lord, I don’t know even what to pray for. If I belong to you, and I am of the firm conviction that I do, I need your help. How, when, where, or what I don’t know. But I truly need your help. Forgive my failings and keep me connected to your love and grace. For I need all the love and grace I can manage to receive despite myself. Hold both Sally and me very close. For without the sense of your presence in our lives, everything seems futile and lost. Allow love, your kind of love, to succeed and direct my course. I pray this In Jesus’s name. Amen.

A PRAYER JOURNAL – Number Two, by Bruce Maloof (name changed for anonymity), a caregiver. Lord, I am in real trouble. I hate being a caregiver. I am awful! I don’t see how people can sustain caregiving over large amounts of time. I have been with Sally since 5:00 pm last Friday. Now it is after 2:00 on Sunday. I won’t get any relief until 1:30 pm tomorrow. I know I love my wife. But I just don’t know what to do with her. She has absolutely no interests. She can’t do anything on her own. She doesn’t read. She doesn’t like watching TV. She doesn’t write to anyone. She doesn’t know anyone by name anymore. She can’t think of anything she ever wants to do. Yet she can’t sit still. She keeps wanting me to create activity. She wants to go somewhere. She often asks to go home but can’t tell me where it is. Yes, she can play the piano but does very little of it. And when she does others have to encourage her to do it. I think the worst part of caregiving is trying to communicate. It is impossible. She doesn’t remember any names of things. She can’t describe anything she needs or wants because everything has a name. Everything is just an “it” or “thing” or “over there” or “they, them, he, or she.” Nearly all, I mean, all the time I have no idea what she is talking about. Most of the time her sentences don’t make any sense. Thus, just to get along and not make her feel bad I say, “okay”, “yes” or “no”, and “maybe”, “if you say so”, “you’re probably right”, “it’s alright”, and “I guess so”, all the while having no idea what her babble is about. In short, I lie a lot, not wanting her to feel bad. She shadows a lot!!! Right now, I have that rare experience of being able to be in my office alone and journal. I don’t know where she it. I don’t want to go looking for her, for if I do and I found her she will start shadowing me again. I hate me having a “poor me” attitude. I want to show respect and love for my wife. I know that I love her but with active Alzheimer’s disease I can’t find her. Once in a while my Sally shows up or flashes through her foggy brain. At those times I know how much I miss her. I tear up. I want to hug and embrace her. I miss her so, so much. But most, or nearly all the time she is not the Sally that she used to be. Her Alzheimer’s disease has destroyed much of who she was. She is losing her personhood. She is becoming less and less of a someone. I know that I cannot stop the progression of Alzheimer’s disease in her brain. I’ve tried. In fact, I am still trying without any help from her. She lost the will to fight the disease. Now she just fights me and others who try to do the best we can to slow the disease. I must make sure she takes her pills. I tried to get her to work with flash cards for the names of things, but she refuses to try to learn. And it is probably true, that she can’t learn anything anymore. She will only forget what she still knows more and more as the disease continues to destroy her brain. Any worst of all, she doesn’t believe any of this. She thinks she is perfectly normal, and it is everyone else who is being mean and won’t let her do things. Lord, I don’t know when it is time to give up hope trying to heal her. If I give up and just let her be, eat what she wants including wheat, dairy, corn, and sugar – especially sugar, she will decline very rapidly. And that would mean that I would have to put her into a memory care facility. That is going to be very hard to do. It is certainly not yet. I don’t know what I should expect from you. I don’t seem to be very good at changing my personally this late in my life. And I don’t know if you can remold me from the inside out. It is not that I don’t have faith, but that faith is focused more on who you are and what you did for me and all humanity in the ultimate sense more than my minute-by-minute today time. I don’t expect miracles at our age. Both Sally and I are going to die in the near future from one cause or another. From where I stand, you have already blessed Sally and me as much as I can possibly expect. You have blessed me way, way beyond my worthiness. I have absolutely no room for complaining. So why do I write this journal? It sure looks like complaining to me. Maybe it is just the question of how do I cope? How do I deal with frustration, heartaches, and the real pain of seeing my love slowly disappear, slowly die? How do I maintain my hold on you when I judge myself so heartless and unloving which is exactly opposite from you? I know, live in relationship with You one day at a time. But doesn’t that need extend to others? If it doesn’t then it seems that the relationship is self-serving or worse, meaningless. I don’t want that. If you know of a way forward that is pleasing to you, I need you to hit me on the side of the head to discover, realize, acknowledge, or understand a true way forward. I really ask for and need your help. When it comes to Sally’s Alzheimer’s disease, I am totally lost. Yes, I am spending a lot of money trying to get help, but I am still totally lost. Amen