And here we are…

Me and Mom
Me and Mom 2016

That photo above was taken the day my mom moved in with us, moving her from California and a senior center, into our home in Alaska. It was momentous, to say the least. Her Alzheimer’s had progressed so much so, that she could not care for herself, nor live alone. And because the situation was what it was, she was brought to live with me. It was the first time we had been under the same roof in more than 40 years. It was a rough adjustment, to be sure. Mom was so confused that she was living in my home, and not that I was living with her, in her home. That I was the homemaker and not her. That the kitchen was my domain, not hers. That I cooked the meals and cleaned the house, and did the laundry. She declined fairly rapidly and now that I look back on it, I think it was because she was so confused. So out of her element. And the arrangement grated on her. So she sunk inside herself. We had days where I could not get her into clothes. Days when she would sleep almost the entire day, and then was able to sleep the entire night. I was getting concerned. She was very angry and the situation was becoming untenable.

One of the smartest things I did, at that time, was I admitted I needed help. I could not continue to have her live with me and someone needed to step in. Someone needed to give her the care she would not allow me to give to her. I needed a strong intermediary. And there are absolutely some amazing people out there who know exactly how to do what I needed. Through the Alzheimer’s Resource Center here in Alaska, I was able to get the education I needed to know how to deal with my mom, some wonderful resources to get mom into the community, and also a place where she could live. And so, with a heavy heart, we moved mom into an Assisted Living Home. I know, deep in my bones, that God guided me to where He wanted mom to be. She is happy, she is well cared-for, and I don’t worry about her. Not one sleepless night. The staff is kind, the home is clean and so very sunny, and the owner deeply cares about all her clients. It was truly a blessing.

Mom is all smiles…

Mom found joy in being with people her own age. She attended the senior center programs. She painted. She laughed so much. And she made friends. It was so cute to see the two of these ladies above hold hands across their recliners as they watched TV together. It warmed my heart. And my mom is happy. I have only seen her frustrated and unhappy a couple of times these past few years. Overall, she is a happy person there. We visit every other week or so. At first, as she was declining more, it would make her sad to have us leave. The staff said she would talk about us, but when we visited, she sought a connection and did not seem to find it. She slowly wasn’t upset when we told her we had to leave. She was ready to get back to her day.

Mom has since fallen twice. Breaking a different hip each time. The first time, she came back and was so happy and easy to help recover. The second time, after the surgery, she languished for a couple of weeks in the hospital. She has never come back quite the same since. She has lost so much of herself. In her mind, she is not 91. Nowhere near. She told me the other day she has plans in place to re-visit her parents in New Zealand. She has no memory of ever being married, nor of having children. This last visit was hard for me. She used pronouns for me: she, her, that lady…not her daughter. She hasn’t known my name for awhile, although she would sometimes say it in passing, but not as it belonged to me. My visit this past week sort of undid me. And I chastised myself for my behavior. I kept talking about my dad, or her 2nd husband, Frank, or my brother. My children, my grandchildren. My home and my dog, who she just loves. None of it resonated with her. I showed her photos and she did not recognize herself in them. And I realized as I was driving down the highway, that it was a waste of time. She has lost those memories and I think I did it so she could feel a connection to me. Because even though I am almost 65, I still need my mom. In my head, sometimes I am still her little girl. Only now I can never be that for her. All I can be is a friendly stranger who comes by now and then. We can chat, but it has to be superficial. I cannot expect more out of her – it is not fair to her. Because when you try to make them remember, it only frustrates them, because their brain just isn’t connecting to memories. She forgot I had brought her some clothes and shoes, and that had only been minutes.

One of the best definitions I have seen that is perfect for Alzheimer’s

For my mom, this word describes her longing for New Zealand. She has lived in America far longer than she lived there, but the heart of her youth was spent among the green of New Zealand. It’s the place she felt the safest and most loved, and it was years before she was married to my dad; she was living at home, and living a pretty carefree, and very simple, life. She can no longer relate to her life now. She has no concept that she is 91 years old. Time holds nothing for her. I see it when she searches my face, and I know she is looking for something that will connect the two of us. She feels a kindred spirit with me, but has no idea why. And she just cannot make that connection. I saw it particularly this time, when her eyes changed and she stopped trying to figure me out. And I cried inside. Because I realized I would never have my mom back. Not ever.

1974

I shared this photo with mom. I had just graduated high school. Her comment was, “That’s a nice photo. Who are they?” And it made me sad because it was a pivotal moment in my life. I remember the day so clearly. And how we laughed and cried because I was growing up. LOL. I had plans to move out to attend college, and little did I know that I would never live under a united roof with my parents, again. I stayed with them when I was between roommates. I visited. But it was no longer my home.

New Year’s Day 2021

I have been blessed with the marriage of my dreams. Are we perfect? Heck no. Who is? But we are in love, even after 36 years together. My home is with my husband and wherever it is we live. And we have lived quite a few places! As I was growing into being a wife and mother, my mom and dad had divorced and both had remarried. Mom and Frank moved quite a lot and we did not see one another very often. Birthdays, holidays, events, and the occasional weekend together. We did not even talk that much. I would chat every few days with my stepdad and my mom would just yell “hi” in the background and tell him to keep talking to me. Ha-Ha. So not seeing my mom daily is not a new thing for me. I was busy raising and homeschooling our kids. We lived on farms and that was not exactly what my mom was used to, nor did she prefer it. They lived in senior, master-planned communities with golf courses. We lived in a lot of dirt. Ha-Ha. At first, I felt guilty when we moved her to the ALH because it’s about a half hour drive away. And in the beginning, every Sunday we saw her. But then “it” happened and the world shut down. Churches closed so we stopped driving into town to attend with our kids and grandkids. We live-streamed God. Whoever would have thought it???!!!

Junior Iditarod 2021

We got busy. And so the time in-between visits lengthened. And computers and media, FaceTime, all that just passed mom by. It confuses her to see you on a phone. Once or twice we tried with one of the worker’s iPads. She just did not connect. Because of restrictions inhumanely placed on senior centers, I can not enter the facility. I can stand, fully masked, in the storm door entry, with mom in a wheelchair, in the house. And that is how we communicate. She does not understand the face diaper thing, nor why we cannot enter and have a “proper conversation.” This last visit, she grew uncomfortable at the cold coming in (I totally agreed! It was all of 14 degrees outside, even if the sun was blazing away. I was cold, too) and so she did not want to talk long. I realized that my visits don’t affect her too much. I explained to the owner of the home that mom and I have not been particularly close and we did not see one another a lot prior to her Alzheimer’s, so not seeing her often probably works for us both.

When all is said and done, I miss my mom. I ache and there is not a thing anyone can do about it. But I cannot allow it to cloud either of our lives. She is happy. Her attitude is good. She is not in pain. And she enjoys her days. I cannot ask for more for my mom. I can’t take this disease away. There is no cure. And I have chosen to not think about it. Perhaps tomorrow I may delve into all of this miasma that is Alzheimer’s disease and how devastating the affect is on everyone around the person who has it. Today? Well, today I am trying a new barley beef soup recipe, and I have some garlic bread to have with it, because my husband has been gone for a week and it’s cold and I wanted to warm him up a little bit, and to welcome him home. Mom? I’ll check on her and perhaps visit her weekly, but I am not going to worry. It adds nothing to my day and it does not change a thing. I love the woman who was my mom and I miss her. That is never changing.

April 7, 2021

I love you, mom. I am sad. I am mad. But I am always your loving daughter. Always.

“…our next breath…”

Every day is a new day. It’s another day we are “on the right side of the dirt.” That’s a phrase I just learned and it makes me laugh. But it is true…”we are not guaranteed our next breath,” as Fr. Justin Rose would often remind us. This week, violence erupted in Las Vegas, taking everyone by surprise. My god daughter was there and two of her friends were shot. They escaped the scene via taxi and were grateful to be taken swiftly to emergency medical care. My son is a 9-1-1 dispatcher and shared the news with me via text, as it was happening. He was asking us to pray for Las Vegas. When he first called, I panicked over my god daughter, because I knew she was there. Thank goodness for cell phones and texting! I cannot imagine the fear the families of the many victims were feeling, until they had definitive proof their loved ones were safe, or at least they knew where they were. The brutality and callous disregard for human life was so apparent, and my stomach roiled all night long, as I worried about the death and injured. I had no idea the toll would be so high.

We don’t wake up in the morning, thinking as we prepare for the day, that it will be our last. The last time we hug our spouse, pet our cat, use our favorite coffee mug, or drive our car. We don’t think, as we leave for the day, we will never return. The people killed this week in Las Vegas did not know they were not going home again. They had no idea that their entire life, and all its dreams and goals, would be fulfilled that night. That they would be leaving this life, and heading to eternity.

Matthew 6:34 tells us: “Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.” And if we spent our moments today in panic over tomorrow, we would not be able to function. So we go about our lives, living them – enjoying them – celebrating them. Because it could very well be our last day.

I was able, during a very lucid afternoon, have a great conversation about dying with my mom. She is 87 and says she’s not too concerned about it. Some days, she says she’s tired and done and just wants to die. Suffering from Alzheimer’s is tough. And she truly misses my stepdad. Since he died 4 years ago, she has not really lived. But as we chatted, she spoke about how dying is not the end, just the end of “this.” She isn’t sure what is next, but she said she is ready for it. We chatted about how she wants to be cared for in her last days, what sort of burial arrangements she wants, and how, exactly, she wants to die. It was cogent and simple and real. One of the best conversations we have ever had.

 

I think more of us should have these sorts of conversations. I think we all need to think about dying. We need to know that today, yes, today, I am ready to stand before the Throne of God, accountable for this life, and ready to be accepted by God into His Eternal Light and Praise. My mom’s brain is all churned up by this crazy disease that eats more brain cells every day. Her synapses have to find a way around another dead end, to enable her to function in this crazy life. But she inherently knows some things. She knows she is dying and it will be sooner rather than later. She told me it isn’t one of her favorite things to think or talk about, but it doesn’t scare her any longer, either. I think we all need to get to that point, living moment to moment, where we are not afraid to pass into this next existence – an existence with God in a pure spiritual life, surrounded by a Holy Light and the choirs of angels. Mom and I laughed about having nose bleed seats, because we will be so grateful to be in heaven, we won’t care about the seating arrangements.

With all the ugliness this week, and how even uglier we are treating each other, it is almost cathartic to be around someone with Alzheimer’s, where every five minutes, you have a chance to get it right. And you don’t recall the past five minutes, where you may have screwed it up. It’s all forgiven and forgotten, and there is joy in that next moment.

My thoughts tonight are filled with sadness over the grieving families, for those still suffering and in danger, and for this world. We seem to be losing our sense of the preciousness and sanctity of all human life. Take this moment, forgetting about all the past moments, and make it your best moment, yet. Forgive, love, repent, prepare. We are not guaranteed our next breath. Thank you, Fr. Justin, for ingraining that into my heart.

 

“….a single hour to your lifespan…”

One thing that is so frustrating for so many caregivers is the endless red tape that is we have to untangle to get loved ones the care they need and require. Did you know that even with supplemental or “gap” insurance, benefits that cover prescriptions run out before the end of the year? Why is that, do you ask? Because the drug companies charge so very much for their drugs. And some of them do not come in “generic” so you have to pay the extra for that name-brand prescription. And it is medicine that keeps the disease at bay – it slows its progress – it makes the day smoother for everyone. And the cost? More than $300 per MONTH. For just that one medication.

And you know what is sad? There are literally millions of people with Alzheimer’s who use this medication. Millions. And is there a cure? No; there is not. The medication just helps to slow the progress. But know this – it is a fatal disease and it always progresses. The medication just eases us all into it, until it no longer matters if they take the medicine or not. And even if you have savings or good retirement programs, if you run into a disease like Alzheimer’s, all that planning may come to naught. My mom lived in a beautiful retirement home. She had assets. But she outlived it all. She is vigorously healthy – other than this stupid disease. And now, she has literally nothing. Trying to find a doctor that takes Medicare is (a) hard and (b) finding one that deals in Alzheimer’s? Double whammy. Then add in all the expenses of these medications, and the fact that they have pretty much run out for the year (it usually runs out in October every year) and you have disaster. Because as I struggle to find a funding source, I am taking a person off her usual round of medication and only administering it every-other-day, to make it last until January. Why? It’s when the funding re-applies to her medication portion of Medicare. Our days are now back to what they were when she first came to live with us – precarious at best.

So now I get to delve back into the miasma known as Medicaid. If you have never tackled trying to get covered by a federal aid program, you have missed nothing exciting. I used to manage a welfare office, and I was in charge of 28 clerks. All they did, all day long, was process welfare applications. I used to review them for errors. And I had to go into the system and make adjustments. I had to attend meetings where new systems were taught to all of us at the supervisory level, to instruct our clerical unit. So it is not as though I am unfamiliar with governmental online programs, nor how they work. But this is day #2 that I have attacked Medicaid. Is it 5 o-clock somewhere?

And another part of being an in-home caregiver for someone with Alzheimer’s – you cannot leave them alone for too long. It makes doing this a stop-and-start process. So yeah, another facet to caregiving that people do not think about.

In the book of Luke, chapter 24, verses 22-24, the Lord tells us not to worry overmuch about these things in life.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air: They do not sow or reap or gather into barns—and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his lifespan?

And why do you worry about clothes? Consider how the lilies of the field grow: They do not labor or spin. Yet I tell you that not even Solomon in all his glory was adorned like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the furnace, will He not much more clothe you, O you of little faith?

Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans pursue all these things, and your Heavenly Father knows that you need them. But seek first the kingdom of God and His righteousness, and all these things will be added unto you.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of its own.”

And frankly, my faith is what spurs me onward. So today I will put into perspective these nasty, little, pains-in-neck that are part and parcel of caregiving. As I head back to that fun website of horror, Medicaid, I will think about the leaves changing color and time passing, and God at the helm of it all. God can overcome Medicaid applications. And I am hitting up the angels on my shoulder for some help, as well as asking for the intervention from some pretty amazing Saints who have gone before me, too! We all got this!!!

 

…”In every moment, thank God.”

I am learning almost every day. Which is a good thing. We need to keep learning or we start dying. And when you run into that brick wall called Alzheimer’s, we get to see what that really means. You cannot learn new things with any degree of clarity or competence. You can learn, yes. The results are spotty, at best.

That is a woman’s wallet. My mom used one of these for years. It is practically falling apart. She asked for a new wallet. Something easier and smaller to use.

This is the type of wallet she chose. We sat and moved all her things to the new one. She was pleased because it would fit into her new purse so much easier. She chose a brown one so it would not show the dirt.

I cannot fully express the drama this small change has made. It changes the entire tenor of what is coming next, or what it is we are moving towards. Maneuvering through the process of purchasing something was pretty awful. She cannot find anything in this little wallet. She actually kissed her old wallet when we got home. So I am thinking of getting rid of the new one.

One day, it was socks. Hers did not match her trousers. No one would see them, because she was wearing boots, as well. But she was miserable. I remembered my tan trouser socks and gave them to her. It changed everything. I hid all her pantyhose and knee-high hose. The confusion having a choice makes is beyond her. I have taken to laying out her clothing and she just puts it on. Normally it goes smoothly. When it came to putting on knee-high panty hose versus trouser socks, we had a little problem…so I removed the problem. I should have paid attention to myself. Ha-Ha.

I thought it would be fun. I had purchased a movie. Mom and I are home alone most nights this week, so I thought, “Let’s grab some grub and put on the movie.” We went to Qdoba Mexican Grill and Fast Food. (Mistake 3 or 4 that day, by me!). It had been such a great day until we left the house! LOL! There was disaster using her wallet to purchase new flannel pj’s, and now she had to choose what to eat, and then buy it. So much noise, too many people, and too much to look at and take in all at once. From what I have learned, this entire situation was going to be bad; I knew it the moment we walked inside. For an Alzheimer’s patient, their brain just does not take in all that stimuli at the same time. It is just too much to process. So, I chose matching Chicken Taco Salads for both of us. She asked for several things on hers that I did not want, and she screwed her nose up at some of my choices. But we got our salads. Then there was the whole wallet thing. Ugh. We got out the door after a few minutes of chaos.

We came outside to rain clouds and a sunset. All past issues were forgotten as she regaled me with stories of her grandfather, how he is still close to her, and how they described shapes in the clouds. She was happy. She loved looking at the clouds; it is one of her happy places. And that is the thing with Alzheimer’s disease…it truly goes moment to moment. Earlier she was upset and wanted to go back to CA because up here you wear too many clothes (she was having problems with the socks and finding her old wallet in her drawer), and now she was excited over her new flannel pj’s and wanted to cuddle up on the couch and watch a movie. Moment to moment.

As an Alzheimer’s caregiver, we all need to be cognizant of the purity of these moments. Pure confusion. Pure joy. Pure anger. Pure happiness. Alzheimer’s sufferers have no filters (usually). What you see is what you get. Is it pleasant? Many times it is far from pleasant. But in the moments of joy, it is unparalleled. The days are long and are made up of the moments we have. In order to find joy in this process of caregiving, we have to focus on that (perhaps only one) moment in the day where we have had success. And we thank God for them. Reluctantly, I even thanked God for the hard moments because I am learning from them. Truly I am. And because I am learning, there are fewer of the bad moments. We are having more of a connection, more often. More meaningful moments and connection – true communication. There are more moments to smile about. Don’t get me wrong. The bad moments are sometimes pretty awful. But I am learning to let those go. I learn from them and try not to provide triggers that create them. And I am learning to treasure those good moments, often gone within a heartbeat.

Yesterday, overall, was a success. There were some truly crappy moments when I had to, on the sly, explain and apologize for my mom’s rudeness and irritation. Everyone was so very kind. But did we have some amazing moments? We did. Laughing during her shower about our hair. Cracking up about all our wrinkles. Laughing at how cleansing products have changed over the years. A wonderful, loving hug and kisses as I tucked her into her flannel sheets and jammies and we wished each other pleasant dreams. Unparalleled.

I will continue to learn from her; learn to leap easily between Alzheimer’s World and Reality and back again, in a moment. It is becoming better and better. I am becoming a better caregiver. Mom is being mom. We got this. And God? He is in every moment. I can feel it.

 

Shining moments and Alzheimer’s World….

 

Today I watched as my mom blanked out, again. “Alzheimer’s World” is a term I am coming to grips with. She calls commercials, “little movies.” She loves watching the news on OAN (One America News), because you get the entire world in one hour and then it repeats. She is shocked every time she watches some of the news, even though it is the 2nd or 3rd round today. She only drinks coffee in the morning (but then grabs a bowl of cereal when she sees us eating) and watches the news. Over and over. And as I showed her a cute kitten video while the news was cycling through, she just turned her head away with a blank look on her face, completely confused at what she had seen. It was kittens playing. It was not the news. She had entered “Alzheimer’s World” and our moment of clarity was gone.

I have come to realize, through reading some great material in a class I am taking online, that when someone has the attention span of 5 minutes, expecting more from them is a waste of energy and emotion. We went to breakfast on Sunday and she sat there, looking blank. She did enjoy watching her 5-year-old great-grandson color, but she did not interact too much. She forgot how to eat French Toast and when I offered to help her, she snapped at me. But I know it was because she realized she was confused. So I did more with less and spoke with my kids, allowing her to eat French Toast like regular toast. Watching movies or TV programs does not resonate – she cannot follow a storyline. She will watch golf or football, because she says sports is just what it is and you don’t have to figure it out. She does enjoy “The Chew” because I think they laugh a lot and are noisy. She loves Steve Harvey and especially loves “Family Feud,” so we laugh together at that. I enjoy those short moments of joy with her. But, those moments of understanding are spreading further and further apart, and it seems to be happening so much more quickly these days.

These are my mom’s hands, This is how she holds them. All day long. She fiddles with her fingers and if she is stressed out, they clang against each other. Her fingers were going nuts on Sunday, as the grandkids played in front of her. It was just too much stimulation. As she enters into Alzheimer’s World more and more, she loses her hold on those of us around her. Her connection gets more and more frayed. My mom is highly verbal. But it is just recitation that is on constant rewind and replay. She can fool some people, who think she is pretty good for having Alzheimer’s, but those of us close to her are in shock she lived alone until August. I still don’t know how she did it, other than tons of notes everywhere and rote repetition of each day. But I also know her clothes were not clean, and personal hygiene is hard for her. The fact that she can still use a mascara wand and eyebrow pencil, and her thin, tiny eyeliner brush, amazes me (I don’t even use them well!). But it takes 2+ hours to do make-up and sometimes she just gives up. There is usually liquid make up all over the bathroom and mascara and eyeliner everywhere when she walks out of it. Sometimes we do our nails, just to connect. I am learning to wear polish just to do something together with her. She loves painting her fingernails!

I saw a new decline yesterday. She could not eat spaghetti, calling it “dinner by the yard.” She complained she could not twirl that thing (her fork) to get the noodles onto it, nor could she manage to eat them. It made me sad (especially since she did not call it a fork). She got all snotty with her comments, but it was to cover her frustration. So I cut her food into little bites and she completed her meal, commenting on how good it was, completely forgetting her struggle with the fork. I am noticing more and more her inability to do common things, and my heart hurts for her. And one of her major strident things is to always match. She will not use a black purse with a tan outfit; she will not wear black trouser socks with any color of pant other than black. Thanks be to God I had tan trouser socks one day recently (they are now hers) because just changing her sock color changed our entire process and her mood became joyous…just because her socks matched. It’s another way of doing more with less. (I’ll talk about that below). Changing sock color allowed us to process leaving the house with happiness instead of anger. Win-win.

So how do we do this every day? For one thing, I am learning, sometimes with a seeming 2×4 up the side of my head, to do more with less. Less communication and less worry. If we have 1-2 moments in her 5 minute attention span, I have a little success. So our days are down to 5-minute spans. And we can move on. The kids got a big hail storm last night and “face-timed” us on their phone. So I walked outside to see if we had the hail. Mom saw them on the phone and followed me. She wanted to close the door. I explained I was looking at the rain to see if we got hail, just like the kids were getting on the phone. She had no idea we had just been on the phone with the kids, seeing the hail, and wanted to close the door. Doing more with less, I continued to watch the rain and chat with the kids, as she closed the door on me and went to sit back down on the couch.

Doing more with less means taking just a small thing and learning that it is the crowning moment of your day, and not worrying about the entire day. Each day is made of moments. It’s the moments we have to focus on, and cling to the good ones, allowing the others to fade away. So today, I will watch her go to Alzheimer’s World and not worry about those moments. I will cling, however, to those moments when she looks at me and I know she really sees me and is connected to me.

I used to read – a lot. But not much anymore. Nine o-clock rolls around at night and I can barely stand up. I have reached the end of my rope, and I am exhausted. I walk around, doing stupid things like taking vitamins and giving the cat her water, making sure mom is getting ready for bed, checking for locked doors, getting the dog settled and myself ready for sleep. Read a book at that point? I can barely make it under the covers.Hubby and I chat a little, and ironically it is me who goes right to sleep; a few months ago I kept him awake while I read late into the night. Yesterday morning I realized how tired I was (and overwhelmed by taking care of everyone else and forgetting time for me) when I arrived at the restaurant, to meet our kids for breakfast on a crazy Sunday morning, wearing my slippers. Yeah. It is like that every day. But there are those shining moments. Those I will cling to.

 

“…something good out of the storms…”

 

I love when the sun is blazing through your windows and it feels so great. The plants perk up, I perk up, the dog and cat look for spots in the sunshine to lay down. It makes the energy surge and I get lots of things checked off my list!! And then I look outside and see them. Black, black, black clouds. And there goes the sunshine. I have to turn the lights on during the day – it gets that dark. The dog and cat are hanging in there, and they are not moving, hoping the sun will return. Me, I know the predicted rain is about to fall.

In a nutshell, that is living with an Alzheimer’s patient, as their caregiver. Most of the time, my sunshine is our goodnight hugs and kisses. They are the best, and for now, that is when I see the mom I have always known. She peeks out as she lays her head down for sleep, clutching the comforter, as she sighs in joy over her big bed.

But moment to moment, we adjust in case the sun will really shine. We are learning, as a family, how to adjust to these moments that make us have to “turn the lights on during the day,” so to speak. And we also are learning to revel in those bright moments. Because this is a disease. I have to keep reminding myself. Always talking to myself inside my head. Because if I don’t do that, I get caught up in those big, black rain clouds. I could go on and on in using these weather terms, but truly, it resonated with me today.

My life will never “go back to normal.” None of our lives are really “normal” because “normal” keeps changing all the time. What is your normal will not be mine. And the normal I once had is gone. I am making our new normal. We constantly adjust to what comes at us. When you are a caregiver, I am learning that what we expect for our day to be changes moment to moment. Can’t lament the fact that the laundry doesn’t get done or that dinner we planned gets scrapped. We go from minute to minute. And I look for those smiles.

As I sit here, typing my thoughts, I look at my mom, trying to watch the morning TV shows. She is so confused. She does not understand most commercials, let alone a story line. Old movies, I thought, would please her. But there is not enough action or noise to keep her attention. Quite often she just stares at the view outside. Everyday she looks at the backyard and comments on the beauty. She loved seeing a wild moose walk across the road while we were driving, although she has forgotten it today. She loves looking at clouds and is always telling us about her grandfather, and how he had her lay on the ground and create shapes out of them. She loves to eat, although she insists she is never hungry. That may well be, but she is eating three full meals each day! And she always cleans her plate! I haven’t repeated a meal since she has been here, but I don’t think she would know if I did. And it makes me sad. Seeing the decline each and every day, gain its ground in her mind. So I try to not react to the moment, but remember the disease. It is a horrible disease, as it steals our loved ones. So much is ahead of us, and I know it’s gonna rain buckets before the journey is over. But I also know the Lord promised He would not give us more than we can handle, and He promised there would always be sunshine following the rain.

“No testing has overtaken you that is not common to everyone. God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.” 1 Cor 10:13

“Monday Monday…”

So this is a gif…not sure what those letters stand for, except it is a mini-movie of sorts. And this is what it looks like outside right now. Wind blowing, rainy, and cold. And I have lights on. It is dark today. It is Monday, too.

This morning, I’ve spent countless minutes interviewing doctors and finding one for my mom. I have a headache. The staff at the various offices were awesome. It is just time-consuming and I am praying for a good fit. I made an appointment, so that is a small victory, right?? I remembered to thaw meat for dinner, so that is another one. I am still not dressed, but mom is. So that’s some more of a victory…baby steps…lol!

I posted the other day about finding peace and calm in our home. And I did say it was a tightrope. Well, today even the rope is missing. Not sure what brought it all on, but I have an idea. And it is like taking so many steps backward, it feels like day #1 and all the fallout we had from relocating. Her tone; her mood; her attitude. Yesterday, a Sunday, we went out – twice in one day – and saw lots of people and there was a lot of sensory input. Our youngest son had sensory issues. He would get so quiet in public and people would often ask us, “Does he talk?” Well, he talked – a lot – but he shut down in public because it was just so much information, and his brain was processing so much, that he was quiet. When he got home, that’s when he verbally exploded and talked about what he had seen, who said what, and he ran around like a crazy little man. And as I think about it, an Alzheimer’s patient experiences some of that same processing style. And it is a processing disorder, when our brain is trying to put the images, sights, sounds, smells, and tastes into some sort of order we can understand and it is not working. Alzheimer’s patients lose brain cells on a daily basis. And processing that input can wreak havoc on a mind, let alone a mood. And boy, oh boy, today is a day. I am actually hiding in another room to avoid confrontation. I am also seeing some odd behaviors today. For example, I heard sounds from the pantry in our kitchen and went to see what was happening. She was embarrassed when I saw her eating cereal out of the box and then yelled at me for asking if she was hungry. It is that sort of day. I had thought the mood would pass, but not yet, I guess.

(I added another gif above for your enjoyment). Redirecting those who are lost can be very difficult, on the best of days. On a bad day, I have found that speaking very little and just walking away helps diffuse the situation. Time will help because those neural synapses are firing and eventually, today anyway, there will be a good set of connections. I just may have to wait until bedtime. For some, the synapses may never fire again. And that is when we need support. I am joining a phone support group. I am taking an online class. And I am reading – a lot. And some days it is just me and mom. And the rain. Ho-Hum. It is one of “those” days. I am hoping for some sunshine this week…in more ways than one!

Yours is the day, Yours also is the night; You have prepared the light and the sun. Psalm 74:16

 

“…like a weaned child, I am content.”

Things change. And change is almost always difficult. And learning is sometimes rough, as well. But when you get to the other side, there can be joy. Growth is amazing. And change can bring new light to your life.

“The light shines in the darkness, and the darkness has not overcome it.”       John 1:5

Our journey has been tough (and it is far from over or settled) but I brought some of the practices of my faith into dealing with this horrific disease, Alzheimer’s. And they seem to work for bringing centering and peace, even when faith is not the ultimate object or goal. Silence and a quiet environment, and a steady environment, has made so much of a positive difference. Just like silence is where we seek the wisdom of God in our lives, it can sometimes completely center us in all our life’s aspects.

I was being fed stories about how busy people are, etc. from several people I trusted. But what I found, in reality, was the busy-ness was to avoid much of life. When someone has Alzheimer’s, their ability to participate in life is greatly diminished. They think they are participating, but they are truly observing. Moving about and going from event to event gives them a sense of involvement, but it is just keeping them busy. As I researched the schedule at the senior complex where my mom used to live, there was something every hour, all day long. So when my mom came to live in our home, she complained, and was angry, about being bored. Nothing to do. Nowhere to go. To entertainment to be had. She forgot how to entertain, and busy, herself. It was all about playing Wii bowling. About going to this event or that event. After days of explosions and anger, I just decided enough was enough. We stopped. We stayed home. We stayed quiet.

“My heart is not proud, Lordmy eyes are not haughty; I do not concern myself with great matters or things too wonderful for me. But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content.” Psalm 131:1-2

One of the things I am learning (through this Alzheimer’s class I am taking online) is that as a caregiver, it is my goal and my purpose to bring peace and contentment to my mom. And lately, contentment has been so apparent. And it is wonderful to see. Wonderful to be around. And it came through stopping this “busy-ness” and allowing a calm to take over. And there has been an emergence of peace, gentleness, and far less confusion. And so much more apparent, there is genuine love. That has not, yet, been forgotten.

Alzheimer’s is fatal. As one of our teachers said, “Life is fatal.” It is. We all die. But most of us pass away with ourselves intact. Alzheimer’s destroys the brain, bit by bit, And each day that passes, more is irrevocably lost. The patient becomes disintegrated, mentally, and is no longer rationally intact. It makes each day unique unto itself. Because not only is each day unique, due of the progression of this horrific disease, each moment is unique. What works at 9am may be totally wrong at 10am. And so it is a tight-rope walk each day. But the explosions and the confusion, and the underlying agitation, those are less and less. Her memories of what she used to do and where she used to live, the people she hung out with, those are fading. She is even using incorrect terms when referring to them. And she is not less because of it, nor is she missing it, nor is she angry about moving. She adores her bed and her room. Each night, she sighs and comments on how much she loves that bed! It has become a source of joy for me. We have had frank discussions about her end-of-life choices and have had some incredibly peaceful discussions about how she wants to die. It melted my heart. We communicated well and we found commonality and peace with her choices. I cling to those moments.

Patients with Alzheimer’s are aching. Because their world is contracting and they find it harder and harder to connect with people each and every day. They get frustrated and so very confused. And taking care of them infects the lives of their caregivers. There are days when I feel like I adopted a 3-year-old. And there are days when I just want to go back to bed. I have stacks of paperwork I am trying to get through, but will someday have to tackle. And I am cooking and cleaning and doing laundry for 4 now. I am learning how to work with someone who doesn’t fully understand the moment and it is good, stretching “muscles” I did not know I had not used in awhile. Caregivers find they are tugged, stretched, and pulled in ways they did not know they could survive, let alone thrive. I am far more tired these days, but I am not wasting many of them! I am too busy!

The joy I see each night, and the hugs I get every evening, complete with profuse thanks for all we are doing for her, well, that pretty much makes it all worthwhile. I haven’t got this cornered and I truly don’t have all the answers, but I do know God is blessing our lives. He is helping keep me quiet and centered. And I enjoy feeling the peace seep into in our quiet mornings, and the contentment I feel in our warm, slow, and quiet evenings. I fall into bed, exhausted each night. Tonight is no different. Tomorrow will be a new day in almost every way. But I will greet the day with hot coffee, and with gratitude for this incredible journey…

 

“Sufficient unto the day is the evil thereof.”

So, I did it again. LOL. I got another tattoo. At my age, with my grandma, crepe-y skin. It hurt. And it bled more than my other one. This one has colors. LOL. But it is still small. It’s on my wrist, just like my other one. I’m a tatted-up grandma. Cracks me up, just to say it, let alone be it!! LOL!  I find it so interesting how people look at you when they see tattoos. I know, because I was like that, too. Immediately judging a book by its very colorful cover. It is such a shallow view of life. Truly, it is. I had one of the best conversations on God, the Crusades, and modern faith with the man who tattooed my first one, a year ago. How people choose to decorate themselves is up to them. Some have different colors of hair, or hairstyles, each time I see them. There are those who pierce themselves (which just looks painful to me!!). Others have long, fake, fingernails in a variety of shades. Women wear all sorts of make-up. Then there is jewelry and clothing, the car you drive, the house you live in, the job you have, the church you go to. It is all adornment of some sort or another. Look at Matthew 6: 25-24 below:

Therefore I say unto you, Be not anxious for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than the food, and the body than the raiment? Behold the birds of the heaven, that they sow not, neither do they reap, nor gather into barns; and your heavenly Father feedeth them. Are not ye of much more value than they? And which of you by being anxious can add one cubit unto [a]the measure of his life?  And why are ye anxious concerning raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin:  yet I say unto you, that even Solomon in all his glory was not arrayed like one of these. But if God doth so clothe the grass of the field, which to-day is, and to-morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?  Be not therefore anxious, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed?  For after all these things do the Gentiles seek; for your heavenly Father knoweth that ye have need of all these things.  But seek ye first his kingdom, and his righteousness; and all these things shall be added unto you.  Be not therefore anxious for the morrow: for the morrow will be anxious for itself. Sufficient unto the day is the evil thereof.”

The Lord cautions us not to worry about our clothing (or any adornment) or the food on our tables, but rather, be concerned, firstly, about His kingdom and His righteousness. And don’t worry about “the morrow,” because today has all its own evils. My tattoo is an “omage”, if you will, to my family. I got a “Forget-Me-Not” flower surrounded by 4 hearts and a little swirling going on, all the size of about a quarter. The Forget-Me-Not is the state flower of Alaska. It is also the flower for Alzheimer’s and Dementia. Both of my parents suffer from them. Our nuclear family consisted of mom and dad, my brother and me. So I got the 4 hearts for us. As my brother and I were chatting the other day, he said when he and I start going dementia on our families, and people comment on it, we can say, “It’s just normal in our family.” And we laughed. As I got tattooed yesterday, I died a little bit inside. Because that is the truth of it. We are losing our parents and more than likely, our families will lose us, too.

As I woke up this morning and saw this tattoo – after removing the bandage I wore all night – I noticed all the blue. LOL. I am not really a blue person. I tend more to greens and reds, and lately, purple. The swirling and hearts are purple. But wow, that is a lot of blue. There is even yellow in the center. LOL. Yellow. Yeah; not my color. And as I thought about seeing it all the time, I realized that it may make me uncomfortable, but Alzheimer’s and Dementia are not comfortable, at all. When my oldest son got a tattoo of the “crown of thorns” around his bicep, I cringed. It was ugly. His comment to me was, “Well, Mom, the crown of thorns was ugly. It is supposed to be ugly. If Jesus could wear it on His head and live through it, I can wear it on my bicep and remember that sacrifice.” Now, he wants to morph it into some sort of Celtic thing with his Spartan helmet for his unit in the Army. He sacrificed much for our country and he will be incorporating that crown of thorns into it. I get that. But when I first saw that gorgeous young man of mine with an inked arm, I actually cried. Because I had grown that baby in my womb and the Lord and I labored over making the perfect skin…and he inked it. LOL. I was not a happy mama! And now I have one more tattoo than he does! He was having a ball, giving me alleluia for getting a second one last night! The stinker.

We memorialize things in this world, to remind us of important events and feelings. The Islamists get this and they regularly destroy statues and memorials to history, because they want to erase it from our memories. “Out of sight, out of mind.” People in the South are tearing down memorials to the Confederacy. It seems stupid to me. The Confederacy is alive and well in all its descendants, as is all of our shared Christian history. Tearing down a memorial won’t erase those memories. For me, I have tattoos to remind me; to give me comfort. They are not for anyone else. They may assault the senses of others; they may cause others to look at me differently or perceive who I am differently…that is okay. If my new ink bothers you and you cannot see past it to see me, I am sorry. Perhaps we were not meant to be close friends, after all.

And I wept, thinking about how my parents will be forgotten themselves, as they, too, forget. Neither of them wants a gravesite. Neither wants any sort of memorial service, either. Both asked to be cremated. My dad is donating his body to a medical school in Texas and when they are done with it, they return the cremated remains to the family; my mom is donating her brain to the Alzheimer’s Association and once they remove it they will cremate the rest and return it to her family (me). So I will have no memorial to visit for my parents. And if I somehow am lucky enough to be gifted with Alzheimers and/or dementia, when my family sees my tattoos on my wrist, I hope they will remember the struggles my parents had, and I had with them, and be gentle and kind to me. That they will see my tattoo of the Cross of Jerusalem and remember how fervently I loved God and fought for my faith – to keep it and witness it to them. My personal “Crusade,” fought and lost and won, for them and for me. That when they see this little flower all wrinkled upon my body, they will recall I waited until I was 61 years old to get it, and that I got it for my parents and for them, too. So none of us will forget each other, as we wade into the uncertain future.

“Serving up memories since….”

We are chipping away at “settling in” to the new house. Yesterday, my daughter-in-law put up a vinyl sign I bought on Amazon for my kitchen. She bought me one for my laundry room, too.

I have not really embraced the idea of these vinyls up until now. They seem more like stickers to me. LOL. But I really like how they turned out. The laundry room one makes me giggle every time I see it. And it is sort of me, making my mark on our new home. “Settling in” is a process. It’s not an event, so for me, there is no deadline associated with it. But I am getting antsy about our garage, because it is a morass of boxes…stacks of them. And there are items I am keeping but don’t need to see all the time. We have shelves and shelves in the garage. So we can take things out of boxes and put them on the shelves, where we can use them. I am leaning so towards getting rid of more stuff! LOL! I have heard the adage, “If it is in a box or cupboard and you have not used it in 6 months, get rid of it.” And I like that. The exception up here are seasonal things like snow boots and snow shovels, versus camp chairs and bar-b-que items. They change out by season and sometimes winter is 6+ months and more. Unfortunately, summer never is. LOL.

I’m not sure what happened to summer. Things are already closing up. I spoke with our favorite nursery people yesterday and they were selling everything at 50% off, giving us instructions on how to plant what we chose, and how to winterize it once it was planted. Winterize. I am not ready for that, yet. My mom is due up here the last week of August and I am fearful it will already be cold.

I had a long talk with my dad yesterday (he’s on the left, pictured above with my brother about 3 years ago) and he is 90 years old. He also has Alzheimer’s, and Parkinson’s with dementia, as well as issues with severe trigeminal nerve pain. He is on tons of medications; last count it was 14 medications daily. And it is all hard for him. He has not been a medication person for most of his life, and prides himself on his intellectual prowess. He knows he is losing it. He is aware he is not as nimble as he was. He gets the Parkinson’s thing. But he hates that his driver’s license was taken away, and he thinks, somehow, they own a new car he was not told about. And he is generally, well, pissed off. He is not taking this aging thing gracefully, at all. He does not want to “winterize.” I told him he was 90 and it was okay to relax a little. His response was, “You may as well bury me now, then.” LOL. Growing up his daughter has been interesting, to say the least. Definitely never smooth sailing. And how do you prepare for a winter in your life like that? My brother and I were joking that we are sort of screwed. Our mom has Alzheimer’s, too. So my brother said, “When we start acting all weird with dementia, we can just blow it off and say, ‘Nah, it’s normal in our family.'”  Sadly enough, and funnily enough, it is true. And he and I also have cancer in our family. So how do you prepare for your own winter? What boxes do you need to go through? What can you do without, because you don’t really use it?

Dealing with stuff is not fun. There is “stuff” everywhere in life. Right now, I am dealing with a garage full of stuff that we somehow needed and had to box up and move with us. And after living in our new home for a month, I know there are things I normally use that I cannot find, especially in the kitchen. Household tools I am used to relying on to get the job done. Stupid things like spatulas I like or a particular bowl I prefer to use. Alzheimer’s and dementia are like that. You go to reach for the familiar and it is not there. Instead, there is a blank space; a hole. And it throws you off. A lot. Some people react in anger. Some get quiet and just repeat sentences over and over, trying to reconcile that empty space. And even others refuse to admit there is anything wrong with them, and that it is the problem with everyone around them. Denial. I have been in denial for a month that I need to get into all those boxes out there…that bowl or spatula are somewhere! And how do I make my mark on this house, this life, before there are too many missing pieces and I can no longer function? If you think I haven’t thought of that, you don’t know me well, I guess. I am always thinking of the “what ifs” in life, in addition to all the “what happens when…”

Am I scared? Sort of. But I seriously don’t have the luxury of time to sit and reflect on it too much, other than the occasional blog post or conversation. I am preparing to have my mom move in with me, because she is experiencing too many holes and she can no longer be alone. Caregivers apparently wear out and need help at some point, too. Right now, it is full speed ahead. We are diving into the boxes today. We are trying to get this organization all done so we can rest easier, and welcome my mom to her forever home. Because neither of us plans on ever moving again. Ever. Scared? I don’t have time to worry about it. Too many details to attend to. My dad told me he worries for me, that I will be overwhelmed with caring for my mom, and that he prays for me. I like that. At least he is cognizant enough to say it and to spend the mental effort sharing that with me. Mom is just resigned to living with her daughter. LOL. Me? I am organizing now, so I can enjoy my time with her later.

I am also looking forward to the future. I am flying to spend time with my son and his family. I have a grand daughter I need to meet and cuddle with. I have friends to catch up with. And I have my mom to pack up and fly back with. My sister and brother-in-law are coming with us, so I have some tourist-hosting to look forward to. There are so many positives. God is good. I am blessed. I have a new hair-do I am still fiddling with, and today I will find that stupid spatula and I will conquer the chaos in the garage. The rest will follow in kind. Feeling optimistic and full of love and hope in tomorrow. Winterize? I’ll work on it.