“…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.

 

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“….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…