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.

 

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“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…

 

“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.

“K.I.S.S.”

My little corner of the world is in a state of flux. There is just so much going on. Little things, yes, but add them together and it’s much, much bigger! And I am trying to not be overwhelmed by all the myriad of little detail-y things that bog you down and make you crazy.

 

 

I am flying to CA to visit with my son and his family, in time for my granddaughter’s birthday, to visit a friend, and to retrieve my mom. She will be moving home with me. And my sister and brother-in-law are flying home with us, to get her settled in. I am flying in to Las Vegas, because it was cheaper, and I had a 2-hour drive anyway. And as my son pointed out, the desert is much kinder than downtown LA traffic. Yes; yes it is. So many arrangements to make, in just those few items I mentioned. It boggles the mind.

I spent a day cleaning a house a friend is trying to move out of, and then I spent time with another friend (and I so enjoyed our chatting) and after that, I was off to water aerobics with my daughter-in-law, leaving our spouses to babysit and cook dinner. Yeah. Not complicated at all. The next morning, I was up early, grabbing coffee and heading off to babysit so my grandson could get his kindergarten immunizations. Quality time with my granddaughter! On the way home I realized I was exhausted. Ha-Ha.

I read this interesting article about women and their hair. The photo of above is of a famous moment in the celebrity, Brittany Spears’, life. She shaved her long hair off. I mean shaved it off. Yes, in her life she was screaming for help. But sometimes cutting our hair means we are ready to get down to business and make some huge changes in our life. Cutting our hair signals that we are ready to begin. I cut my hair off. Funnily enough the hubby did not notice. LOL. But for me, I decided to embrace my increasingly curly hair and my new practice of air-drying it to allow it to curl. So I layered it. And it curled. Yay! Still makes me laugh that my husband did not notice the layers. Oh well. At least it is not purple. Yet.

You see, in my exhausted mind yesterday, I had been chewing on the fact that I am going to be extremely busy in the next few weeks. My sister-in-law and 9 of her children (and hubby) are driving their motorhome up and staying for 6 days…the day after they leave, I leave for CA. And that is in just days…it is almost August 1st. And my life will not be ever calming down, or be the same. Ever. So, why not make hair care easier? In the article I read, it mentioned that women who cut their hair (when it seems a drastic change to them) are trying to control something because so many other things are out of their control. I totally get that.

“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 store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life[?

 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed 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 fire, will he not much more clothe you—you of little faith?  So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:25-34

This verse always, always gives me comfort. Yes, there are so many variables, and things I cannot control. Some days there are more than other days. Sometimes things are looming ahead of us and we are so aware of it. Other times, things just happen on their own, taking us by surprise. One of my favorite hymns is “Seek ye first” –

Seek ye first the kingdom of God
And His righteousness;
And all these things shall be added unto you.
Allelu, alleluia.
Alleluia, alleluia, alleluia,
Allelu, alleluia.

Man shall not live by bread alone,
But by every word
That proceeds out from the mouth of God.
Allelu, alleluia.
Alleluia, alleluia, alleluia,
Allelu, alleluia.

Ask, and it shall be given unto you;
Seek, and ye shall find.
Knock, and the door shall be opened unto you.
Allelu, alleluia.
Alleluia, alleluia, alleluia,
Allelu, alleluia.

And I am clinging to the words of Scripture in Matthew and those expressed in this hymn. And now, well, now I am off to try and work these newly-freed curls I have into some sort of style. You know how it is when you get a haircut and the stylist does it one way, and then you have to go home and try to make it do the same thing on your own? Yeah; I am there today. I wish I could call her up and ask her to come do my hair at home! Ha-Ha! But making a simple change to take back some control is very freeing. I just hope it looks okay!!

 

I’ve got this…and so do you.

 

“Open your mouth for the mute…”

I am constantly amazed how people can say one thing, purport to be one thing, and yet are completely different. When the “real’ person comes out, it can be so shocking. We have been experiencing this over the past few years, over and over again. I just wish people would be exactly who they are. I know so many people who change their faces, even their voices, depending on their audience – they have a work self, a homebody, a person for their spouse, and another type for their friends. That must get confusing. I have always been the same, regardless of my audience. I suppose that can be good, or bad.

I’ve always been told to put on clean underwear in case you’re in an accident. So I do. (My mom should be proud I still do that! I almost hear her when I am dressing! LOL!)  I can wear clothing appropriate for situations. And as I have gotten older, I choose comfort over style most of the time. But that does not mean I change the person I am, nor the values I believe in. It just means I dress appropriately for the occasion.

There are people in our larger faith community who dress a certain way, wear their hair a certain way, and always wear a symbol of faith on their person. For them, it symbolizes their modesty and simplicity, and their beliefs. (My sons referred to it as my “Little House on the Prairie” days! LOL!) However, many of these same Christian families do not allow their children to interact with “public school children,” nor do they allow them to play sports on public league teams, or have friends outside of their strict faith circle.  Some do not allow their children to interact with anyone who does not attend their same church. But we are exhorted in the scriptures to live in this world and to deal with others. We cannot learn, being hidden away. “My child, if sinners entice you, turn your back on them!” (Proverbs 1:10)  It is biblically, and scripturally, incorrect. We are not called to be separated from our neighbors, but rather we are called to participate and be the “light” and the “salt” in this world.  The godly are called to be as bold as lions (Proverbs 28:1) There are so many instances where we are asked by Our Lord to involve ourselves in our communities and neighborhoods, for the good of everyone.

We are not instructed to alienate or shame, either. When parents are teaching their elementary-aged children to speak to adults/neighbors like the “Inquisition,” there is a problem. Pre-teen children should not be telling their neighbor adults that they are going to hell because they do not attend a particular church. That is learned at home. When adults act like they reside on a higher plane because of their religious beliefs, they are not being Christ to others, or when they act superior because of their careers and income levels, they are not being Christ to others. When they wear crosses on their chests or the back windows of their cars, but yell, shout, and belittle their neighbors, they are being a false witness to the faith. When they don’t like something their neighbors are doing, and threaten law suits, or offer monetary rewards to make it go away, they are being dishonest and are actually being a briber. And that is not a Christian act. At all.

When we act a certain way in front of our children, we are teaching them. They watch our bodily actions and they listen to our words, and they pay attention to how we treat others. And unfortunately, quite often the adage, “Don’t do as I do, do as I say” ends up falling far short. Children are great imitators. They will act and speak just like their parents. If you want to know everything there is to know about a family, talk to their 10-12 year-old. You will know it all. So people ought not to fool themselves into thinking they are making a certain impression in a community. Their false-face is there for all to see. And when they parade through their parishes, the hypocrisy is unnerving.

“Open your mouth for the mute, for the rights of all the unfortunate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy.” (Proverbs 31:8-9)

The Lord asks us, so many times, to care for others. For those who cannot care for themselves. I have thought about this a lot lately. What does it mean that someone cannot care for themselves? Quite often we look to the easy example of the poor, the handicapped, the elderly, and the pre-born baby. But as I thought of this, caring for ourselves can often be beyond some of us. We simply don’t know how. And caring for myself means I make sure I have food and shelter; I help myself become more skilled at what I do; I work constantly to grow in wisdom and love. But what if I can’t really do that? What if I am hurting inside and cannot help myself? What if I have never been taught the love of Christ and His forgiveness, and all I am exposed to and see is my neighbor? What if I am one of those who cannot care for myself, one of the needy? What if my neighbor, who says they are a wonderful homeschooling, Catholic, Christian family, is my only exposure to those things? Then my neighbor becomes my school. I learn from watching you, and from interacting with you, just as your children do. What it is to be those things, I learn from watching you. And when you belittle others and exclude the neighbors because they don’t “measure” properly, what sort of example are you? You are a false one. And you are causing people to stumble. Some of those people are your own children. And I am angry. I admit it. I am royally, beyond the pale, mad.

“If anyone causes one of these little ones–those who believe in me–to stumble, it would be better for them to have a large millstone hung around their neck and to be drowned in the depths of the sea.” (Matthew 18:6)

I am angry because you are being this poor example to my children and grandchildren. You are turning them away from Church. You are turning them away from learning to be good neighbors. They are becoming exclusionary because it is safer that way. When they let you in, or allow you to come closer, you hurt them, again. They are not excluding your children, because this was not caused by them, but they are no longer happy to see them walk up the driveway. They no longer really want your children teaching and interacting with their children. Why? Your children tell them everything you say in your home. They know how you really feel. They share freely what your opinion of my children and grandchildren really is. And this is just wrong. So very wrong. And you are hurting others. You are hurting my family.

When we will be honest with one another? When will we learn to grow and become better people? Just because you want things to be a certain way, does not make them that way. What is, well, it just is. Some things we can affect a change on; others we have to accept. Wisdom is knowing the difference. Temper tantrums, in front of the children and the entire cul-de-sac, cannot change what is. Shame on you. Shame.

I am struggling to not go barging in to situations that are not about me. Being a parent does not stop when they leave your roof. You are always going to be protective of your kids. When my oldest son went into the Army, in my mind, all I could see was my 5-week preemie. In my head, he was not well over 6-feet tall, but barely old enough to be born. And even though my kids are all adults now, I still worry about them. And when others array themselves against them, this mom goes all “shield maiden” on them! (I love the Viking stories and lore surrounding Shield Maidens. They were so awesome!). It is also like being a mother-bear…watch out!

The Christian in me longs for peace. I long to be able to share with these people the error of their ways, in a godly, Christian way. But I have been the victim of these sorts of Christians for more than 25 years. And it pretty much follows a pattern. It is ugly, it is predictable and I am thankful beyond thankful that I was able to extricate myself and my family from that environment and be more of a presence in this world. But I never lost my faith, nor my values, nor myself. Dante says, “The darkest places of hell are reserved for those who remain neutral in a time of crisis.” He is telling us we are not to abandon the world when it needs us the most. We need to insert ourselves into everyday life, as Christians, bearing a true witness of the love of God. If we are to be that “light” and “salt” in this world, we cannot bear false witness. We will lead others to hell. Proverbs instructs us to be people of character, above bribes, and to be honest in dealing with everyone. It is laced all through the Book. Because, “If the godly give in to the wicked, it’s like polluting a fountain or muddying a spring.” (Proverbs 25:26)  We cannot become like the world. And we cannot sit back and allow evil to muddy our springs. Sometimes we have to speak up…or in my case, vent!

“So we are Christ’s ambassadors; God is making His appeal through us. We speak for Christ when we plead, “Come back to God!” (2 Corinthians 5:20)

And how are we doing? Have we truly accepted the Word of God for our own lives, thereby being an honest witness of a believer? Is this posturing? Make believe? Are we charlatans? Or are we modern-day Pharisees, praying on the street corner for all to see??

“And when you pray, do not be like the hypocrites, for they love to pray standing in the synagogues and on the street corners to be seen by others. Truly I tell you, they have received their reward in full.” (Matthew 6:5)

I am done venting. I am retiring to my chair where I can drink a cup of tea, and cuddle with my cat, enjoying our spring mix of rain and snow. And I will pray for these people, to be honestly who they are, to be kind before all else, as well as to be a Godly witness and not a false one.

I feel like I went off the rails a little bit in this post. Maybe I did. But sometimes I just want to shout it from the rooftops: ENOUGH! STOP!  And so, proverbially speaking, I have done that. Back to normal, now!

The Long Goodbye….memories made and lost…

Kodiak Sunrise

Sometimes life gets away from you. Time is stolen in the moments of the day. And suddenly, months have passed and you wonder where it went. We cannot ever recover the moments we allow to slide past us. Life has a starting point, and it has an ending point. It’s how we spend the time in-between those moments that count. Each morning, as in the gorgeous sunrise above, we are given a new beginning, a fresh start, a new opportunity. Deep breaths…

alzheimerswords

Recently, with my mom suffering from Alzheimer’s (which is a form of dementia and has no cure and worsens over time) my sister and I had a rough “Alzheimer’s day.” Quite often, she will call and we will have a gab fest that lasts for a couple of hours. We laugh, we share, we usually cry together. I was blessed with this woman coming into my life as an adult, when our parents chose to marry. She is my stepsister, but I love her like she’s been my sister all of my life. She has been such a blessing for my mom. And for me. When my stepdad died a couple of years ago, she stepped in as the primary caregiver for our mom. She lives 5 minutes from the retirement community my mom lives in. I live thousands of miles away (more than 5 hours by plane!) and my sole brother lives about an hour away. She and I are the main decision-makers for my mom’s living and health concerns. And this week we had a particularly rough day, which has led me to think, non-stop, about where we go from here.

Pistons

Alzheimer’s can best be explained like this: “Alzheimer’s is a type of dementia that causes problems with memory, thinking, and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.” There are many forms of dementia, and Alzheimer’s is just one of them: Huntington’s Disease, Stroke, Dementia with Lewy Bodies (Robin Williams had this type), Traumatic Brain Injury, Down Syndrome, Frontotemporal, etc. There are so many types of dementia. With Alzheimer’s there are several things happening, all at the same time. A neurologist once said it is like the pistons firing in an engine. Sometimes they all fire in the correct sequence, and the engine runs smoothly; sometimes they mis-fire and we have sluggish momentum; sometimes different pistons fire in random order, changing the order moment to moment. And the engine stalls. That is the frustrating thing with Alzheimer’s – the person can be chewing your head off and turn around and say, “And how is your day, sweetheart?” All without skipping a beat. We can have blow-outs and fights and then sit down to a beautiful meal together. My mom has always had what we all have called a “sharp tongue.” Even as a young girl, I was often on the receiving, hard end, of her barbed comments. As I grew into my teen years, it got worse, because I became adept at slinging them right back at her, to protect myself. And she slowly, with the love and help of my stepdad, developed a filter. Her comments were fewer and less sharp as she aged. And we were all hopeful she would become this lovely, sweet old lady. And then my stepdad died. I cannot tell you the difference his death has made in our family. He was a source of joy and laughter, stories that made your side ache with the laughing, and constant love. He never differentiated between his kids – the ones he made, and the ones he gained through marriage. He was a second dad, given to me as an adult, and someone I adored. For my kids, he was just grandpa. And, to his family, he was a walking saint! He loved my mom so much, he somehow made her a better person. And we did not realize the extent to which he ran interference with our mom. Now that he is gone, her filter has gone, too. Along with the development of this horrid disease, she is grieving the loss of the love of her life. And she is not able to handle her life and how things have gone, very well at all. And she is so alone. At night, she kisses the photo of my stepdad goodnight, repeating it with a good morning kiss when she wakes in the morning. She usually cries over his death at least once a day. She is so alone.

Older women

My sister and I shared, in our conversation the other day, that we both hoped our birth parents would somehow get remarried. I think it is the fantasy of all children of divorce, regardless of their age when the divorce happens. It is natural to want your family to be together; your parents to be married to each other. But we also love how my mom and her mom are friends. They bonded over the love for the same man. And they see one another, do lunch, shop; I think it’s great. But my mom is lonely. She is angry. She does not want to live in a retirement home. She wants to be with her husband. She said she really hates her life. She lives in a beautiful place and has people to hang out with. But because she has met them since this disease took over her life, she does not really know them. She often forgets who is who. It is beyond her capacity to make friends any longer. Companions, yes; friends, no. And she gets angry – a lot. (Have I mentioned that before???) So far, we have been able to keep her where she is, but not for much longer. Alzheimer’s is winning. It is taking my mom away from us, replacing her with this angry, confused, person who is not handling things, and is just not a happy person, deep down.

And my heart hurts. Because I am going to have to stand up to this formidable woman – even if she is only 4’11” on a good day. And trust me, she is formidable, even at 87 years of age. And I hate that I am going to have to take her freedom from her. I am going to have to take away her choices. Because she is no longer capable of making sound choices. She does not remember so many, many common things we all take for granted. Even how to use her phone message machine, a stove, an iron for her clothes, even how to do laundry. There are so many things she is forgetting. And every moment is a “crap shoot” in that we don’t know which pistons will be firing, and which will not fire ever again.

And that brings me back to that “moment” thing. You know, we are not guaranteed our next breath. No one is immune. Everyone dies. There are no immortals (even though in my paranormal literature there are all sorts of them). Our lifetimes are finite. We are given just this one shot at it. And each moment is a singular occurrence in our lives. Each moment, each breath, is unique and sole, and each one departs, leaving us better or worse for that experience. With Alzheimer’s, those precious, lucid, loving moments become fewer and fewer.

clocks

Every moment I have on this earth can never be repeated. My memories are mine. There are things I have – objects – that mean something to me because they are associated with a memory that is precious to me. For example, I used to collect tea sets – cups/saucers/dessert plates. I have them in boxes. Yes, that is box with an “es” at the end. I have lots of them. Each and every one is precious to me because it was part of a family member’s collection, or I found it on an antique hunt one weekend, or came upon a set unexpectedly, or it was even a gift. But I have all sons (boys!!!). None of them particularly care about dainty, little tea sets. It is sort of a girlie thing to collect. What am I going to do with them? My plan is to gift my daughters-in-law, granddaughters, and special friends with them, with an attached story of where it came from and why it is special to me. And I will get around to it…ha-ha! I will. And I was thinking of all my mom’s things. When I take her choices away from her and place her in a memory home, it is basically reducing her home down to a room. What do we bring with her? What do we do with what we don’t bring? What is important to her, to her wellbeing and contentedness, her sense of safety and “home” when we do relocate her? Will any of us appreciate her things the way she has? We will understand why she has what she does?  What are the things she is particularly attached to? In addition, I also ask myself, should I bring my mom home with me? With my husband and son? Is that fair to them? To me? To her? Is it doable? And so I cry…I am looking at my tea cups and remembering my grandma and my mom…God, how many wasted moments have there been when I could have said, “I love you” and given them hugs?

Antique tea sets

What memories am I making today that will resonate tomorrow? How am I sharing myself with those who mean the most to me? Because this could happen to me someday, and I want my family to have really known me. What did I do today that will make a difference on my tomorrow? Am I doing all I can do for myself, my family, my friends? “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?” (Matthew 6:25-26)  I try to trust, to not worry, because it does not add to my life…not a single hour. I try to face things as soon as I realize they are weighing on me, as I have found reality is usually much easier than what we conjure up in our minds. (And stress can be eased by just dealing with things head-on, facing our fears). But I do worry about my mom, and her limited, and getting narrower by the moment, future. I know she doesn’t worry about anything, because thinking like that no longer happens. Her pistons don’t fire like that. She doesn’t concern herself about anything but the moment she is currently living in…and the next moment is a guess. Some of the beauty (in a really warped way) of Alzheimer’s is the ability to only concern yourself with the here and now. It is also something that makes dealing with this disease so difficult. They call it the “long goodbye.” I’ve quoted it before. And I have used it before in blog posts. But as this disease progresses, I see the reality of it; I am living the reality of it. My mom rarely remembers when I call her. She thinks I don’t. That is fine. I know she won’t remember our chats after 4 or 5 minutes. “How is your day, sweetheart?” is said over and over in our conversations. The more often that sentence crops up, I know the conversation is over and I usually just say goodbye. This week, she was happy and getting ready for dinner (she’s old school and changes her outfit for dinner every day) when we were chatting on the phone. I had sent her flowers for Mother’s Day and she was joyful and happy, and grateful. The next day was hell day. Alzheimer’s won another round. Her pistons were firing all over the place. Unfortunately, those sorts of Alzheimer days wipe away the good days, because they are getting to be more and more severe. And so, it’s back to decision-making. A deep sigh, lots of tears, and research on my computer for places, benefits available, options for tomorrow. Lots of prayers about these upcoming choices and decisions. I know in my heart there are not many more tomorrows. I just wish I was 17 again wearing that red dress we both loved, and we were dressing for my graduation party from high school, and that I had taken that moment to tell her how much I loved her, when she would have really heard me, and remembered.

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