I’d been waiting for something profound to trigger my hand to write the blog again. I was stopping myself from publishing many of the posts I’d started since the last one in October because they felt so mundane. My goal is and has always been to have my posts reach a part of you that needs to hear the message I’m guided to write.
I don’t write this blog for fame or fortune. In fact, I don’t bother much with all the tech stuff, I don’t care how high in Google Search I show up or what rank my page is. The masses are not my focus. You. You are what I care about. You, sitting there in your pj’s, with the bowl of cereal for lunch and animal hair all over you from having snuggled with your pet just now. You, who has family too far away so it’s easy to be emotionally removed from the goings on where you are. You, who is in another country protecting my freedom, putting yourself in danger for my sake. You, the cop on the beat, the dispatcher working on Christmas Day and the Firefighter or EMT that just witnessed a horrific scene you will never unsee or unhear. I know this pain.
You, with the needle in your arm, shooting up to forget your pain. You, with your hand up about to strike your child or your spouse because they got on your last nerve. I see you. You, with friends who have their own lives and often don’t connect because they are going through their own issues and don’t want to burden you. You, sitting with tears flowing down your face, feeling alone, lonely, sad, scared, abandoned with a heart that hurts so much you don’t know if you can bear another moment on this planet. I’ve been there too. You, who just had to change the diaper on your adult loved one with Alzheimer’s while they screamed how much they hate you, while they slap and try to bite you. Or you, who just had to call 911 again to help you lift your loved one off the floor where they fell and are bleeding because they refused to use their walker. You, who is so full of anger and resentment for being the one stuck with caring for the parent that was cruel and abusive to you growing up. I feel your pain. I see your hurt. I know your despair.
As if that is not enough to deal with, then there are the holidays that hit full force. As I scanned some of my social media groups I saw repeating patterns of loss, hopelessness, sadness, anger and isolation. In the caregivers group it was intensified because they had no one to vent to. I know their frustrations. I’ve been living it for many years now. That got me thinking and why my hand starting writing this post.
The mundane be damned, there is something important here for all of us to understand if we ever hope to find peace within ourselves and dare to have some joy in our lives.
The Holidays are often a hard time for a lot of caregivers, but no one is exempt from feelings of sadness, abandonment, betrayal, hurt and anger when society pushes the happy family theme into every aspect of your life at this time of year. Especially when that is not now, or has never been your reality. All too often, we long for what used to be, but that will never be back. It reminds me of Neil Diamond lyrics in a song lamenting what has changed in the relationship, that said in part “used to be doesn’t count anymore”, but I don’t believe that. I think what causes us to be unhappy is because we stay stuck in what used to be and forget to be alive to what is right in front us. What used to be was a mark in time that mattered in the moment. If we forget what used to be, we could very well fall into the same experience again and again. One only need to look at the current state of politics across the globe to see that what used to be could very easily come back to now if we aren’t mindful. I think we need to keep in mind what used to be, good and bad both, in order to begin to learn how to be happy in the moment we have right now. The key is not staying stuck and that is where learning to let go comes in.
Learn to Unlearn
I say ‘learn’ on purpose. Too many of us are walking around with blinders, going through the motions, setting up our routines to the point where any nudge away from that sets us into a tailspin. That is a learned behavior, reinforced over a lifetime of choices, misguided beliefs and societal pressures. You may be too young to remember the rule of proper dress back in the 1960’s which is you never wear white after Labor Day. Can you imagine the ostracizing I went through as a child because I loved to wear white pants and white shoes. All year long. When I became a teenager, I then wore all black. I was accused of being in mourning 24/7 but the truth was I liked black. I thought it showed off my green eyes. Besides, I grew up very poor, the only fashion guidance I got was an old issue of Teen Magazine left at a doctors waiting room and was years old already. I could claim ignorance to social moors.
We learn behaviors, we accept beliefs, because it is easier than trying to figure out who we are and what we stand for. Over time, it just becomes part of who we are. I would urge you to stop and breathe right now. I can feel you tightening up and holding your breath. You’re thinking you don’t need to read this jibberish. Wait. Please. You need to hear this. Whether you agree with it or not, just hear me out.
In my situation I am faced with being the only one who remembers what used to be. My loved one is quickly forgetting and confusing memories. I could be angry and sad all the time that I’ll never get that back, but that takes away from what I have right now. Alzheimer’s Disease forces you to stay in one of the longest goodbyes of your life. I am 100% positive you or someone you know is struggling with anger, upset, frustration and even abandonment, it is the state of the ego trying to control the mind. As long as you allow your Ego to decide what makes you happy, you will always find ways to feel hurt, upset, sad and angry.
I am here to tell you I found a way to stop hurting myself, and more importantly, I’ve found a way to be at peace over this terrible disease. Maybe it can help you too.
For the caregivers reading this specifically, I believe we get triggered because we still treat our Loved One as the person they were. One upset caregiver spent a lot of time and effort looking for the perfect gift for her mother in law who has Dementia. She spent a lot of money on it and was certain she was going to love it. Instead, the mother in law took scissors to a very expensive item and cut it up into pieces. The caregiver was at her wits end, but what she failed to realize is she was buying a gift for the woman that used to be, not the one she is now. The mother in law now is not in a cognitive frame of mind.
The only one upset in this scenario was the caregiver, all because she held expectations that could not be met. How many times have you given a gift only to have it be met with less than enthusiastic joy? Thinking back on it now, could it be because you had ‘expectations’ that were not met?
Expectations Are The Cause Of Your Pain
I had to learn to stop having ‘expectations’ not only from my loved one who could no longer be aware of his actions or words, but from family and friends. Every trigger that set me off was because I would have done something differently than they are (or aren’t). I would have shown up, I would have made an effort, I would have taken time from work, I would have paid their overdue bill, I would have offered to help, I, I, I…….and people can never live up to that. It set me up for a never ending circle of disappointment, hurt and a whole lot of tears and angry words. In the meantime, nothing got better and I became so overwhelmed some days I just figured I’d die before he did and his kids would just have to deal with it. I was done. I was exhausted. I was angry. I was making myself sick. I was killing myself and I was the one causing it.
This Christmas I had no expectations. Truth be told, someone had to remind me Christmas was a week away. I was too busy being in the moment to pay attention to the dates. Sure I knew it was the Holiday Season, but there was no time to sit down and handwrite Christmas Cards like I used to. Everyone on our list knows we are dealing with Alzheimer’s and this year I just didn’t have the energy to send out a message of good cheer. It was easy to see how many people actually only sent cards to us after we sent one to them – they were missing in action. There were many who sent cards but didn’t bother to ask how we were holding up, we had a handful of signed cards with no personal lines, just a ‘family’ signature. One from a family member with a chain letter all about “I this, we that, aren’t we awesome Godly people” I’m sure you have someone in your life that matches my experience.
This year, instead of being upset about any of it, I simply said a thank you as I put the card in the Christmas Basket and let it go. What works for them has no negative impact on what it is I need to get through this time of year. Once you learn how to let go of expectations, life just gets easier. There are no hard feelings. I am able to sit in silence and enjoy nature and be grateful for what I do have. If someone doesn’t have the desire to send me a card without receiving one from me first, that is ok. Maybe they too are having a hard time, or maybe the friendship has run it’s course. When you learn to let things go, you begin to gain an insight into your self at a level you wouldn’t before. You can begin to see how we are all doing our best to figure out our place in this world. When you don’t hold expectations which leads to disappointment, anger and hurt feelings, you can bypass all of it and skip right to joy.
I focus instead on what can I do to live with myself? Of course I do still have to walk away sometimes muttering under my breath when my loved one is having a hard time, but I let it go. It has no control over me anymore. My needs, things that bring me joy matter and I’m working on bringing more of that back into my life. It is a priority for peace to hold a bigger place in my world. I’d long since forgotten about boundaries and self care and I’ve discovered that since I don’t waste time being pissed off at the world anymore that I actually can carve time in for me do things for me here and there. It feels really good.
How To Let Go
For anyone reading this far who is struggling with any of what I’ve shared, what I found helped me greatly was to step away, lock myself in the bathroom or go outside and talk to a tree. If I had to cry/sob/scream I did and then I gave myself 30 minutes to just feel all of it. Then, when time was up I said to myself ‘ok, time to create a new better version’ and it really did help me to shift out of overwhelm.
When you are dealing with disease or illness, your own or as a caregiver, this is IMPORTANT! Our loved one’s simply are not capable of meeting our expectations, because they are not who they were. We have to meet them where they are at, and if that means they get a clean pair of underwear and socks, if that makes them happy, yeah! You both win. Holding them accountable for our own expectations is not fair to them or to yourself. Once I figured that out, life is just so much better here.
The night before last my loved one said he doesn’t understand why we are visiting this house. It is not his house he said.
Where is your house? I asked him. I don’t know was his reply. So I said to him, I’m here, the dogs and cat are here, can you be ok with that?
Ok I answered. Then we were back to watching the Hallmark movie we had on. No getting upset. No overwhelm.
This is such a challenging road we are on and each of us has a different detour we take to reach the final destination. My sense of it, after having my Loved Ones’ have Alzheimer’s going on 19 years now, is not to lose yourself in the disease. It will eat you up if you don’t set a boundary for yourself. I didn’t for a long time. Trust me, it is worth it to get it back.
I’m alone this Holiday Season, again. It’s really ok. It’s me and my loved one and it’s all he can handle. I have had to learn how to fend for myself while full time care giving.
A date on a calendar doesn’t really matter to him. I miss having family around, our kids live in another state and are leading their own lives without us.
I’ve learned to be good with a funny movie, a good deep meditation and a cup of tea with some cookies I have to hide from him or I’ll never get any. His sweet tooth is voracious.
I learned to be my own best friend. I want you to think about that, especially if you are feeling left out of events and family activities right now.
How much of what others do or do not do is impacting how happy you are? Start teaching yourself to frame your happiness in terms of you and how you can be good to yourself first. It will take some practice but each journey starts with the first step.
On Christmas Day, he was up for an hour, then back to bed. I put on my country girl panties, pulled up my boots, applied my trusty back brace (I know my limits!) then went out and stacked a rack of firewood. What a beautiful day we are having here, sunny, blue skies, fresh air. It felt like a special blessing just for me!
After that I grabbed my girl chainsaw and cut back a Japanese maple the previous owners planted too close to the house, but it has perfect sized limbs for kindling for next winter. I noticed the yard is blooming, red and purple flowers dot the landscape, unusual for this time of year but what a delight for my eyes to feast upon. The weather will bring whatever it will. Right now, I’m going to smile at the flowers and be happy. .
There is no knight in shining armor coming to my rescue. I’m determined to be my own. There is no damsel in distress in this house. Just a strong willed woman who has accepted the grace of love from the Angels to know I never am alone here. I allow my eyes to see what most do not. I have found my peace in the things most people overlook. Stop ignoring what is right in front of you. I’m talking about the whole of You.
In my experience being guided by the Angelic Realm, the answer is learning how to just let things be. It is a lesson 66 years in the making.
Take a cue from what I’ve learned to speed up your learning process on how to let go.
- Let go of expectations that other people can never meet.
- Let go of the need to be right and instead, choose to be happy.
- Let go of the idea there is something better ‘over there’ when all you really have is here and now.
- Let go of the fear that keeps you stuck.
- Free Fall from anything that does not make you happy to be alive.
The Only Change You Can Control Is In How You React
I can’t stop being the sole caregiver, but I can and have stopped expecting life to ever be the way it used to be. I can and I have found ways to be happy. I can and I have found things to laugh about, from my silly cat chasing a wadded ball of paper to one of my dogs rolling over on her back snaking her way over to me for a tummy rub while she talks to me with her sweet scooby doo voice.
Don’t believe everything you think. Your thoughts are not always truth.
I watched a movie last night that was so uplifting that when the ending credits and song came on I got up and danced, the dogs joining in and my loved one laughing at our antics. Finding moments where you can let go and just be, that is my wish for you.
May you begin 2020 with a new drive to find your joy and be in the peacefulness of your heart.
May you be the light for the one person who is seeking it.
May you be the grace of goodness in action.
Peace will find you.