Bouncing Back

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Writing has always come easy to me. It’s been a way to get my feelings out
and move on. Lately I have been frozen, not able to articulate much of
anything.

If you’ve followed my journey and the trials of living with someone with
memory loss, then you’ve known the struggles. It was probably obvious to
everyone but me I wasn’t handling it well. I was plowing through. Reacting,
reacting, reacting.

After my husband went into memory care in late November, it was followed by
both of us getting Covid, and for ten days we were both sequestered in our
separate apartments. It gave me some respite, but it wasn’t enough. I thought I
was fine, but I was pretending.

In the middle of January, I had to move out of the senior living community
where my husband was in the memory care section. It meant more packing. It felt
like all I had done during the past eight months was pack. The move went smoothly,
and I now live in a small, peaceful, cute apartment with others my age. My body
did not react well to the peace or the change. As long as things were chaotic,
I could seem to hold it together, but my mind didn’t know what to do with the
peace.

I hadn’t been eating well in a long time. I wasn’t hungry and my throat,
chest and stomach tightened when I thought of eating. The one thing I had going
for me was that I slept soundly at night until about a week after I moved.

I woke up in the middle of the night with a tight chest, feeling like I
needed to burp but couldn’t, and experiencing wanting to jump out of my skin.
Crying all the time was easy. I finally realized I needed help. I couldn’t go
on pretending I was alright, though I was probably the only one that thought
that. My daughter took me to the ER. No, I wasn’t having a heart attack; I was
having a panic attack and severe acid reflux. Basically, I was having a
meltdown.

For the past twenty years, I had been on anxiety medication and medication
for my stomach, but those medications were stopped in October. I foolishly
thought I could do without it during the most stressful period of my life.

Because of my up and down anxiety about our situation, I alienated some of
my family. They couldn’t deal with our drama and if you know me, in good times
I am a dramatic person, so multiply that when I am depressed and anxious.
Knowing this only added to my anxiety and depression. And yet, though I knew
those facts, I didn’t seek help. There was no time in the drama of my life to
do that for me.

The silence of being in a new place after my diagnosis in the ER was a
blessing. My doctor said I was exhausted. I needed rest. Some days I would just
sit on my bed, close my eyes, listen to the silence and breathe. It was all I
could do. The thought of making myself food or paying a bill, doing any cleaning,
and even going downstairs to get the mail was too much. I felt frozen.

After the first week on medication, I was slightly better, although the meds
were messing with my stomach, so I decided I needed to try to do something. My
anxiety and stomach were still yelling at me. I would tell myself: “At 1:00 I’m
going to clean the bathroom.” I’d clean the bathroom and go right back to my
bed to breathe. At 2:00 I’d complete another small task. Surprisingly, I got
quite a bit done this way. Eventually I would have shorter intervals.

Little by little and another change of medication so my stomach wasn’t so
wonky, I am improving. I can go down to coffee, visit my husband and even make
it to Menards with a friend to find curtains for my window without shaking or
feeling I want to run and hide. I’m taking it slow.

For some reason we think we can do it all. Maybe it’s the media telling us
we can do it all. Maybe it’s our stubbornness that we don’t admit we need help
to navigate the hard times in life. It could be we listen to the voices that
have never walked in our shoes and don’t understand, making that known with
their words, and we hear those voices the loudest. It could also be we were
taught to show any weakness is shameful. Growing up in the 50s many times
parents would warn us when we were crying: “You want something to cry about?
I’ll give you something to cry about.” Tears were not accepted, especially for
men.

As a result, many of us oldsters hide what is happening. Wisdom comes with
age and experiences. I absolutely was not the most understanding daughter with
my mom when my dad died. I was 20, newly married with a baby on the way and so
I didn’t understand what a loss it was to her. I was too mired in me. When she
got dementia, at first, I ignored it. I didn’t know how to deal with it.
Because of this I understand the younger generation not understanding our aging
process.

Healing from mental health and physical problems is a journey. Each person’s
timeline is different and whatever they are feeling is real to them and
shouldn’t be compared to our own journey. We need to not judge mental health
issues and embrace supporting those we know whether we understand or not. When
you are in the midst of angst it’s hard to find your way to the resources
available and then navigate the muddy road of the process of organizations.
That’s where the support of friends and family comes in, finding the resources
and gently pointing us to better health while listening and being patient.

I again can laugh and see light in the future. Prayer and family and
friends, along with the medical community, are walking the steps with me. They
are proof angels still exist. I am sharing so those who feel hopeless know life
can be good again. I’m getting there. Find your angels. They are there if you
share your struggle. And you might find them where you least expect it. I did.

Don’t Be Mad

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I have a soft heart. It may not seem that this brash, loud person is vulnerable. A friend whom I love, who is occasionally abrasive, but a tell -it-like -it-is person, keeps a part of herself hidden. She and I are alike in that we seem to be extroverts, but I found I’m really an introvert pretending to be an extrovert and always out there. We have loud personalities. We take up causes. We have loud opinions. Hidden underneath that out-there personality of my friend is one of the softest hearts I know that gets hurt easily. She keeps that hurt hidden.

Going through the transition of my husband moving into memory care has brought much soul searching. I’ve never lived alone. Acknowledging that I’m scared is hard. It’s a secret to be kept inside and I realize over the years, especially the last five, I have run on fear. Fear of upsetting the person I lived with, fear of upsetting my children. That fear came out of me as someone that was always whining, asking for help from my family, and in desperation it came across to others as a person to stay away from because I wasn’t pleasant to be around. By being opinionated and verbal about issues that weren’t mine, and taking up some other cause, I could hide my fear or put it out of my mind for a short time. My behavior distanced myself from people I love.

I was breaking inside but on the outside I was pretending, trying so hard to be this I’ve got this person to those around me that weren’t family, this social person, the perfect grandma and good friend. And I complained and cried. Why weren’t family coming home more often to see us and help, to ease what was happening. The Pandemic caused isolation and loneliness but when it was over the visits still were sporadic. I knew it was because of busy lives, but still I suspected it was the drama our life represented because of the memory loss, and me being completely emotional and irrational. Maybe emotionally they couldn’t handle what was happening either. Don’t get me wrong, if it was an emergency they were there immediately for us. Now having some quiet and alone time I pretty much accept it was me that kept them away for the small things, for more frequent visiting.

I have spent the major part of my life wanting people to not be mad at me. I can just hear Dr. Phil saying, “And how’s that working for you?” Looking back I tried too hard, came out as over the top, giving mixed messages and being wishy- washy in my actions. I am always being told by my family , “ Make a decision.” And yes I have been very outspoken. I will tell you right now that those who are caregivers 24/7 don’t think rationally either. They are too caught up in the drama of their lives.

I now see it wasn’t the situation, but me and my crazy personality that made close ones stay away. And it was fear that made me act that way. Fear of being rejected, of making the wrong decision. Fear that I would never get out of the nightmare, and fear of saying I felt I was living in a nightmare, not being able to say those words to anyone because the person I lived with really was living a worse nightmare, so what he needed is more important. His fear was there but not expressed as fear, but anger. Who wouldn’t be angry? So I felt my fear was not rational because I was fine, the healthy one. .

I suspect I am not the only caregiver that doesn’t show who they are to their families, doesn’t express their true feelings, and what they do express comes out wrong because the stress turns their ability to verbalize their emotions, making the words irrational. Not only are we fearful but angry. We keep that inside too. Caregivers compromise who they are, withhold their anger and sadness about the situation to keep the peace, and not have their families upset with them. And yet it isn’t working.

Family is love and that love doesn’t leave because of discord, but it may be hard for all of us to remember that. Our kids live in a world today that is very stressful. They are busy just trying to live and excel and don’t have time for all the drama we may bring to their lives. They have learned to set boundaries to protect themselves. And because of that, we as parents may not understand. Us oldsters were brought up in an entirely different world. We didn’t know about boundaries and stress reduction. We didn’t have media telling us to protect ourselves by staying away from toxic people. The mental health help was not there.

The two worlds of the younger generation and the older generation today are having a hard time, in some cases, understanding the dynamics of the world growing us up differently.

My generation didn’t know it was acceptable to put the toxic people out of our lives, even if they were family. If my mom would have known that she might have put my grandma out of her life. My grandma was always yelling. You can ask her grandkids, we never remember her smiling, but because she was family she was taken care of until she died. My parents sacrificed a lot to take care of parents and brothers because that’s what you did in the olden days. The nursing home and mental health weren’t options.

My mother wanted to teach in Alaska. She wanted to travel the world, but gave up her dreams to stay home and take care of her mother. Others did the same. Family came first. I always thought that was why she was crabby, now I surmise she was crabby from Caregiver burnout, not because she sacrificed her dreams. I did not understand how hard her life was. The generational difference. But the one thing I understood was that family was everything above work and even money. Both my mom and dad financially helped out family members when they had a need. Occasionally supporting them financially until they could get back on their feet. They helped both sides of the families. They helped friends. I still have my dad’s billfold with all the IOU notices from people he lent money to. Their brothers and sisters were the same way. Before her death my mom told me what she had wanted to do with her life, but that she did not regret giving up her dreams to help her family. I believe that. It was the caregiver burnout that caused the crabbiness and I didn’t understand. It was a different generation.

I think my generation has a hard time understanding the difference of today’s world and where the shift is. So we hurt, we hide it and we don’t make sense to our kids because they don’t understand that our expectations come from our past. And we don’t understand the world they live in and how stressful and time consuming the reality that is their life is.

We have a communication gap between what our hearts feel and what we say. If we choose to share, how we say it because of our emotions, it comes out wrong. Emotions that we keep hidden and don’t always recognize ourself such as fear.

Caregivers have so much fear hidden inside of them. Their world is changing. The people that love them don’t always see that their needs are getting lost in the abyss of whoever they are taking care of. A caregiver wakes up in the morning, if they’ve gotten any sleep, and puts one foot in the front of another and takes a step, and occasionally that one step is all that is holding them up. If you know a caregiver ask them what they fear. Do they feel their security is gone and they no longer feel safe? If they are that tender hearted person with a brash exterior, you may have to read between the lines because if they let all the hurt out that they are hiding, they might break. Or they may be that soul who doesn’t want to make anyone mad for fear they will disappear from their life and they will be totally alone, and so the decisions or words they speak may come out as complaining or whining, but really it’s a cry for help, for you to help them be who they are. And love them anyway.

Sunday Morning Prayer Thoughts

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I can’t imagine a life without prayer. It may appear to others that I have let my prayer life lapse. I haven’t been to an actual church service in the last few years, partly because of Covid, and partly because of laziness and disillusion with the structure, meaning the business side of churches today. Yet, I rarely miss a Sunday of online service.

I have a prayer app and a Bible on my phone that I try to use each day. It’s where I store my prayer list. My bookshelves are full of Christian books, although I am almost scared to use the word Christian anymore because of the way it is bandied about with political affiliations that twist the word, and turn it into something I do not recognize when I think of prayer and relationship with God.

I might appear to others and even my family as someone who has lost faith. I used to be an avid churchgoer, dedicated volunteer, and tried to do everything the right way in the eyes of others. That’s just it—the eyes of others. For me the pandemic helped slow me down and examine my unease when it came to church and prayer.

I found I loved the beautiful worded prayers of others, in person or in a prayer book. I get anxious because though I am a writer, I can’t make up flowery prayer on my own. Panic sets in if someone asks me to lead prayer. I babble. I’m insecure and the words don’t reach my heart.

I realized that my frustration with church was about the business dynamics and the structure. We spend more time and money on pomp and circumstance then we do on educating our children with programs and outreach to the community. It costs money to belong to most churches, and if you don’t have any, it’s occasionally hard to participate in activities or listen to the pitch for money when you can contribute little. I once was told by a church council President that my views didn’t matter because I didn’t give enough money. Imagine a homeless person walking into a church service with their old clothes and see what would happen. Would they be welcomed? Would they feel out of place?

It’s scary to share my insecurities. They’ve always been there. I just sucked them up and became part of church communities. When our life changed years ago I saw things differently. A change in our lifestyle because of circumstances changed the dynamics of our church life. No one intentionally made us feel bad, and many had no idea, but we couldn’t contribute like before and there was always an appeal for money to make the building better, or activities cost so we quit going to the activities and pulled back. We felt the shame of not being able to heed the call as we had in better days.

Back to prayer. We had to rely on and believe God had this. That’s all we could do. That’s all we can do in our lives. Prayer is what kept us going. It wasn’t the flowery prayer but just the simple prayer from our hearts that would be uttered over and over in different ways through the day. It was the two or three of us in conversation over coffee about God and prayer and taking the time to pray with those people, that kept us going. It was the simple prayer, “Help me, Lord.” It was others praying for us.

I may not be in church each Sunday, but prayer in my day never ends. I find myself uttering small prayers throughout the day, prayers of thanks, of blessing and gratitude and asking for help. I guess you could say it’s prayer without ceasing because it’s a habit. It’s where I turn. I suspect there are many others like me.

I know I need church community. My best friends over the years have come out of that community and will again once I settle in my living arrangements so I can find a church home. Church community though can be so much more than a building or a denomination. We have church community here, where we live in Independent/Assisted living. It is not unusual for someone in the dining room to ask for us to pray, or at an activity. If someone needs prayer another resident might come to our room, or we to theirs to pray for someone. This is another kind of church community.

I chose to share my thoughts because I felt someone might be feeling the way I have, and to let them know they are not alone. Your prayers matter and they are heard, no matter if they are rote prayer or a muttering as you’re walking down the street. It doesn’t matter if you’re in a sacred space or in a homeless shelter. Your prayers are heard.

I am not a religious scholar, just an ordinary person so I can’t tell you if what I’m saying is right. They are just my feelings. And now it’s time for online service with my old home church. Have a beautiful prayerful day.