I Didn’t Know I’d Become Infected By His Illness Too

lost touch with people I used to be

Before Rodger came to live with us I thought I knew who I was. Up until that time I had a great track record of weathering life’s challenges. When faced with hardship I did what I had to do to solve the problem or adapt to the changes.  I cried and prayed often but never did I feel as if I’d lost myself.

I didn’t know I’d become infected by his illness too.

When he wandered I followed in his footsteps.  When he lashed out at me I lost my temper and shouted back only to be overwhelmed with guilt once the storm had passed. When he refused to bathe for days I’d find myself staring at my disheveled reflection in the mirror. Exhausted from lack of sleep and afraid of what he might do if I left him alone long enough to take a shower I looked, and probably smelled, as bad as he did.  Time after time we were admitted to the hospital together. Him to a bed me to an uncomfortable chair beside him. We spent days and weeks together in that place.

As he continued to fail it felt as if pieces of me were falling away too. I had to face the truth. We would lose this battle.

When Rodger died he took the person I used to be with him and left behind a part of himself and this changed and hopefully smarter me. The one writes our story. The one who would do it again for a family member if needed. The one who would not expect more from either of us than we are capable of giving.

Blessed be the caregivers, both who you are now and who you are becoming.

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Trust Yourself

When caring takes courage

Trust Yourself

How could I do that when no matter what I did he continued to worsen?

Things accomplished one day were no longer possible the next. Memories came and went within moments. Laughter turned to tears and acceptance to anger so quickly it was impossible to know why.

Who am I describing in that passage? Him or me?

It could be either.  In truth, it’s both.

I came to finally trust myself because I finally realized I was the best person to do this, flawed as I was.  I made it up as I went along and so do you. That’s how this is done when you are juggling the love and the loss. “All at once, all the time.”

 

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Good Morning Caregivers – Sometimes I Question My Sanity

 I hope this little bit of levity brings a smile your way.

I question my sanity

how do you feel today

I am thinking of you today.

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Good Morning Caregivers – Get Off My Mountain

Many paths to success

Just as there are many paths up the mountain there are the many paths of caregiving.  How ours will twist and turn depends on the reason it began in the first place and how the one in our care responds to the many obstacles in the way. Will he reach for me to guide him along the way or will he insist on refusing my help only to fall and accuse me of pushing him?

Every day, around each new bend, we are faced with something unexpected. It could be a breathtaking moment when the air clears and the sun breaks through the clouds of confusion and he smiles. I feared I’d never see that twinkle again. “Thank you, Lord,” I whisper.

Far more likely it’s another loss making every step we take together more difficult. Our path is longer and far more arduous than we could have imagined. It is also the way that works for us. We figure it out as we go along.

 The last thing we need is “the one who runs around the mountain, telling everyone that his or her path is wrong.”

Unfortunately there seems to be as many of them as there are of us. If you are dealing with someone like that send them this Hindu proverb and tell them the Imperfect Caregivers says, “You are not helping. You are making things more difficult.”

GET THE HELL OFF THE MOUNTAIN

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Good Morning Caregivers – I May Not Be Perfect

I may not be perfect

If I am able to help you understand anything by way of this blog or my book I hope it is this:

I AM NOT PERFECT AND THAT’S OKAY

We are human.  We become angry sometimes. We feel resentful when others go off on vacation or simply out to dinner and we can’t. We get sick and tired of hearing the same question over and over. We need sleep and get cranky when we don’t get enough. Our heart breaks when the one we are trying so hard to help accuses us of mistreating them or stealing from them. Or worse yet, don’t remember who we are.

Some days we want to give in, give up, and let go so badly we nearly fall apart. And then we feel terrible. We doubt ourselves and become convinced we are bad people.

We are not. We are the caregivers. We are not perfect. We are human. We give all we have and then give some more. Y

You, like me, are not perfect but no one is.  You are a caregiver and because of you the one in your care will have many more good days than he or should would have had otherwise.

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Good Morning Caregivers – For Your Inner Peace

 

inner peace

But if it does, if someone is driving you crazy with advice on how to do this and telling you things you already know and have heard so often you want to scream. If a family member is more concerned about where the money for care is going than how much you are giving up to be there for the one who needs you. If your loved one is failing fast and your heart is broken, know that I understand and I am here for you.

Sometimes there is no peace for us. Only the next moment and worry about what it will bring. For those minutes, hours, days, years, I send you my prayers every night.

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Good Morning Caregivers – Just for Today

Maxine - Throw in the towel

Caregivers, just for today leave the towel where it landed. I know you are doing everything you can to maintain your home, your family, the person in your care. You do much more for others than you do for yourself. Just for today let go of every little thing that doesn’t have to be done right now.

Maybe you were taught to make your bed every day. Just for today leave it unmade. 
Instead of cooking dinner order a pizza.

Let the dust settle on the coffee table. It will be there tomorrow.
Stay in your pajamas.
Let someone else take out the trash.

Consider the things you do automatically because you have always done them … pick at least one … and just for today let it go. Use those few moments to have a cup of coffee with Maxine and absorb a bit of her attitude. Do it just for today. Do it for you.

 

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Good Morning Caregivers

superpower

When I was a young mother I often wished I knew what my babies were thinking. I wanted to know what the world looked to them, how it felt to be so dependent. Were there moments when they felt alone and wondered how they had landed in this place so different from what they had come to know? When did they recognize me as someone who loved them and would protect them always?

Caring for Rodger I wished again for that same super power. I never received the ability to read minds but I never stopped trying to figure out how to keep him warm, comfortable, and safe. Some days the things I tried worked, some days they didn’t. There were days many days when my actions confused and frustrated him. But there were also many when he recognized me as someone who loved him and would protect him always. Love and care are the super powers we have and that dear caregiver is everything to them regardless of their age or needs.  Be proud of who you are and what you do.

If you have a super power, or wish you did, tell us about it here.

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Good Morning Caregivers

It’s your turn again. Please tell me how you are doing. If you’d like to share a bot of your story, please do. It may help another caregiver.

how do you feel today

You Don’t Have to be Saint

selflessness

During the time I was a caregiver and even now, after reading Confessions of an Imperfect Caregiver, people tell me I must be a saint.  Always I assure them that I am not now nor I have I ever been saintly. Rodger would have been one of the first to agree with me.

None of us are saints. We are people dealing with dreadful situations brought on by terrible diseases. There is reason to be angry and resentful and less than perfect.  There are even more reasons to quit. To walk away and let someone else deal with it. There is only one reason to carry on. Someone we care about needs care. It’s as simple and as complicated as that.

Maybe there is no one else is able to do it. Maybe no one else is willing to do it. The reasons are many.  But you are the one doing it and you are the one putting the needs of another before your own. That is not saintliness. There is no expectation of perfection or being prayerful or holy.  That is selflessness.

Selflessness is what keeps you going in all your glorious imperfection. Making it up as you go along. Stumbling and picking yourself up as you do the best you can.  Reaching out to the person in your care at the start of every new day. Yes, you are the embodiment of selflessness and probably no more a saint than I am and that’s a very good thing.

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