Dementia – “Oh, What A Journey!”

When I first began my blog in January 2015 it was to try to help dementia caregivers.  At that time I had been a caregiver, in my home for 2 years, to my brother with dementia.

I followed and read blogs of caregivers.  I posted comments on their blogs trying to help them in some small way.  What I finally realized was that most caregivers post to release their anxiety.  They fail to reach out, as I did, to learn from the experience of other caregivers.  I also realized, if a subject you post is serious, few people wish to read your posts.  Others do not wish to listen to the challenges and problems you are going through in your life.

Today, I am going back to the subject of dementia.  Recently I connected with a person who is beginning the journey of caregiver.  A person, I so want to help, who is already struggling with the stress of being a caregiver.  I laid awake, in the middle of the night, for hours thinking about her and what she would encounter as a caregiver.

For any beginning caregiver out there who may find the time to read this: I am posting a list of challenges, emotions, sorrows, etc. that you will face on your dementia caregiver journey.  Perhaps this will help someone.

1.) You will never in your lifetime face a challenge as hard as being a caregiver to someone with dementia.

2.) You will deal with more stress than you have endured in your entire life.

3.) The love you have, for your loved one with dementia, will turn to hate.  Because the burden is too heavy to bear.

4.)  You will feel resentment and anger for a person who cannot help it, because they are journeying into the fog of dementia.  A person who will forget who you are.

5.)  You will have anger toward family members who will not help you in your journey as a caregiver.

6.)  It will amaze you and cause you grief and distress to see how society shuns a person with dementia.  Because those with dementia cannot function as normal human beings.

7.)  You find that you have to put your life on hold for another human being.  You have no life of your own anymore.

8.) Long before it gets to the point of considering harm to the person with dementia or yourself to end the misery: Find that support group, seek help from your doctor, preacher, or a close friend.  Believe me I have read many stories of those that were ready to end the dementia journey in a very drastic way.

9.)  Don’t let those in society who do not deal with being caregivers tell you: It’s your duty to finish the job you started as a caregiver.  You can do this, when you know you do not have what it takes to finish the journey.That you should never put someone you love in a nursing home.  That you should feel guilty about having negative thoughts about the person with dementia.  To have those thoughts is simply human nature.

10.)  Do not listen to judgments about you as a caregiver.  Especially  from those who never help you or have any idea what dementia entails.

11.)  Most states require a power of attorney, signed by the dementia patient before they become incapacitated and still understand what they are signing – To place them in memory care, assisted living, or a nursing home.  Seek the advice of a lawyer, who can draw up the necessary forms for you.

When my brother became angry, wandered away time after time, my husband became ill – I hired a lawyer to get Medicaid from DHS for long-term-care to place my brother in a nursing home.  My brother’s case was unique.  His business partner in another state had failed to steal a very small portion of his assets.  He was being penalized for owning a small portion of real estate.  Real estate owned under an unbreakable Joint Tenant Deed, with rights of survivorship.  After a 5 month battle with DHS, and $10,000 of our money, for the lawyer and penalties imposed, my husband and I obtained Medicaid for my brother.

The first nursing home worked for 10 months, but not well.  Constant phone calls, problems, and many meetings with staff.  The second nursing home we placed my brother in has been a God send.

There has still been stress even though my brother is in a nursing home.  He is presently in his one year reevaluation process.  Yes, every year the paperwork is done again to make sure the patient is eligible for another year of Medicaid and has not acquired any new assets for which you will be penalized.

But, at long last I think I can give most of my focus to my life and the health concerns of my husband and myself.

 

Outdoor Creatures

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This lizard may gross some of you out with his bug meal.  I believe this bug is a cricket.  I took several photos in different stages of the lizard eating this bug, but I will spare you.  If he had gotten out of the shade on this 100 degree day the picture would have been better.

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This is my husband’s 4 inch pocket knife next to this tomato worm.  This worm was not on a tomato plant, he was devouring my small Lilac bush.  You just can’t win for losing.

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I might have taken a better photo of this wasp if I had not done it through the window.  But you see, I was just outside, minding my own business, watering my flowers, when a wasp zapped me in the back.  Did it hurt, oh yeah, it hurt and it hurt for quite some time! Needless to say, I check very carefully before I step out the door anymore.

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Well, you can tell me these bugs I photographed through the window do not have a stinger, but I am not taking any chances, I am going to be an indoor photographer.  Ha Ha

Expressive Farewells

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I recently watched an older movie, “Uncommon Valor” filmed in 1983, starring Gene Hackman as a retired colonel.  The plot of the movie – discharged military personnel going into Viet Nam to rescue American soldiers who had been left behind.  Soldiers who became POWs in Laos, for 10 years, after the Viet Nam war had ended.

The scene before they entered into battle, to rescue these POWs, involved Gene Hackman and his intriguing farewell.  He quoted a scene from Shakespeare’s play Julius Caesar.  Act 5, scene 1, Brutus and his brother-in-law Cassius were parting to go into battle.   Quote:  Brutus – And whether we shall meet again I know not.  Therefore our everlasting farewell take.  Forever and forever farewell, Cassius.  If we do meet again, why, we shall smile.  If not, why then this parting was well made.  Cassius – Forever and forever farewell, Brutus.  If we do meet again, we’ll smile indeed. If not, ’tis true this parting was well made.  Brutus – Why then lead on.  Oh, that a man might know the end of this day’s business ere it come!  But if sufficeth that the day will end, and then the end is known.

This parting quote effected me quite profoundly.  No matter the reason for parting, one cannot predict if they will meet again in this lifetime.  I thought about family members and friends who have passed away.  I remember my insufficient goodbyes to some of them. My regret for not expressing my love toward them.  Oh, that we could turn back the hands of time and say those goodbyes again!  Most of us realize, as we get older, how life is unpredictable.  For that reason my goodbyes have become more expressive, sincere, and affectionate.

We can learn so much by watching the actions of children.  My granddaughter’s farewells have always involved hugs and the words I love you.  I believe my granddaughter has learned an important lesson in life earlier than many adults.  Never let anger or any other emotion or circumstance keep you from expressing your love.  Do not pass up that opportunity to passionately show your love and concern for others as you tell them farewell.

“Oh, that a man might know the end of this day’s business ere it come.”

Old Phrases

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I was thinking about old sayings people used and wondering where they originated.

FIT AS A FIDDLE:  Being in good health.  In sound condition.   Fiddles like most musical instruments require cleaning and maintenance to remain in good condition.  It was a common instrument when this phrase originated.  In 1616 William Haughton wrote – “This is excellent ynfayth (means – faith), as fit as a fiddle.”

FIGHT FIRE WITH FIRE:  To retaliate with a similar form of attack that has been used against you.  Originated with firefighters.  This was mentioned in the Rock County Recorder news in the 1870s, “Someone has suggested that it might be proper to fight fire with fire on the prairies, but it would hardly answer to attempt this in an oil refinery.”

FISH OUT OF WATER:  Someone being in a situation that they are unfamiliar or unsuited for.  In 1483 English poet Geoffrey Chaucer compared this to a seaman trying to look like he belonged on a horse.  Seaman were more at home on a boat than on a horse.

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FOOL’S GOLD:  Iron pyrite resembles Gold.  Thus it was given the nickname – Fool’s Gold. English seaman Martin Frobisher during the latter part of the 16th century made 3 trips to Canada.  On his 2nd trip he found pyrite and thought it was gold.  He carried tons of this pyrite to his home, in 3 ships, and he made a fine profit.  He returned and mined more until everyone finally realized it was not gold.  Frobisher and everyone were fooled.

Don’t Laugh At Others

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Peter, Paul, and Mary sang a song years ago called, “Don’t Laugh At Me.” We might all take notice of the lyrics and stop being unkind and cruel to others.

Verse l:  I’m a little boy with glasses.  The one they call a geek.  A little girl who never smiles, ’cause I have braces on my teeth.  And I know how it feels to cry myself to sleep. I’m that kid on every playground who’s always chosen last.  A single teenage mother tryin’ to overcome my past.  You don’t have to be my friend, but is it too much to ask.

Chorus:  Don’t laugh at me.  Don’t call me names.  Don’t get your pleasure from my pain. In God’s eyes we’re all the same. Someday we’ll all have perfect wings. Don’t laugh at me.

Verse 2:  I’m the beggar on the corner. You’ve passed me on the street.  And I wouldn’t be out here beggin’ if I had enough to eat.  And don’t think I don’t notice that our eyes never meet.

Chorus: Don’t laugh at me. Don’t call me names.  Don’t get your pleasure from my pain. In God’s eyes we’re all the same. Someday we’ll all have perfect wings. Don’t laugh at me.

Verse 3:  I’m fat, I’m thin, I’m short, I’m tall.  I’m deaf, I’m blind, hey, aren’t we all. In God’s eyes we’re all the same.  Someday we’ll all have perfect wings. Don’t laugh at me.

Chorus:  Don’t laugh at me.  Don’t call me names.  Don’t get your pleasure from my pain. In God’s eyes we’re all the same. Someday we’ll all have perfect wings. Don’t laugh at me.

Rabbits & Spiders

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This baby rabbit is quite brave if Mom is there to protect him, but if she is not, he is gone in a flash.  Mom is about ready to have another batch of babies so she will not be around much longer to protect him.

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What is this creature!?!  Believe it or not, this is a spider web.  The anchor to a limb that this web was attached to came loose in a high wind.  The spider was frantically trying to control his web.  It looks as if this web, flapping in the breeze, is an exotic bird.