Dementia Robs You of Your Mind

Just as winter robs this Oak tree of its leaves, Dementia robs a person of their mind.  Your mind slowly dies and disappears.  It takes from you, your personality, your ability to understand, the memories stored in your brain. It causes you confusion, takes your skills on how to perform daily tasks of life.  It takes you from those you love.  I have shed many tears for the loss of the brother I once knew.  How many times have I wanted my brother to return to me.  I cannot count all the things I miss about my brother, they are too numerous.  The hardest part of dementia, for a caregiver, is to watch their loved ones deal with the loss of being a normal human being.  Their dignity gets lost in the shuffle as their mind slowly fades away.

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Sorrow really rears its head when you are a caregiver, but the emotion that truly hits home is guilt.  It is not the caregiver’s fault their loved one has dementia.  You never feel as if you are handling the situation correctly.  You do not want to make the decisions for another human being.  You feel helpless when those in authority force you into making a choice, between 2 alternatives, for your loved one’s care.  At times grief kicks in and the tears flow.  You feel selfish, because you tell yourself you do not want to be a caregiver any longer, yet you know that is what you have to do.

Anger plagues the caregiver, because you try to protect your loved one from all the drugs that doctors prescribe.  You see your loved one with dementia turned into a robot that the nursing home can control.  It makes you feel as if the drugs are destroying what brain your loved one has left.  I fight for my brother constantly about the over use of drugs.  I have to admit it seldom does much good, but I have to try.   Caregiver means you are required to protect a person who is incapable of protecting themself.

It’s hard for me to enjoy my life, because I realize my brother has an inferior life to mine. Somehow this seems cruel and unfair.  You want to turn the clock back 20 years and give back to your brother, the life he lost.

Perhaps someday no one else in this world will have to suffer with this horrible disease called Dementia.  That cure will be discovered.  I know it is too late for my brother, but I pray to God that the cure will be found soon.

Guilt Is Gone, Replaced by Saddness

I wrote about having to travel to the nursing home yesterday to make decisions for my brother J.R.  I ask God to help me with the decisions I had to make, I cannot handle this alone anymore.  My family supports me, but I have to make all the hard final decisions. Because J.R. is becoming violent I had to decide whether to send him to a psych hospital for 2 or 3 weeks for evaluation or transfer him to another nursing home.  I had him in a psych unit last year for evaluation and I was not really happy about my decision.  I did not want to transfer J.R. to another nursing home and remove him from his familiar surroundings.   Changing a dementia patient’s surroundings is extremely hard on them.  I decided to send J.R. to the psych hospital.  I hope they can adjust J.R.’s medications and his violence can be controlled.

This problem arose because family members of other patients were upset with J.R.’s behavior.  I can understand that.  He would enter rooms of other patients day and night, because he could not sleep.  During the day he would stand in another patient’s room when they had visitors.  He would never say a word and this would make the visitors uncomfortable.  At night he would enter other patient’s rooms and wake them up, which would startle them.  At times he would grab their arm, but he never hurt them.  J.R. pinched the head nurse, called her by the name of his ex-business partner that stole his assets.  He would tell her to get away from him and leave him alone.  He tries to make other patients in the cafeteria stop eating and he eats food from their plates.  He has ask nurses to dance with him in the hall, which they say is fine.  The list of the things J.R. does goes on and on.

My daughter told me in the nursing home yesterday to let the guilt go.  I have let go of almost all of the guilt.  What I am having trouble with is the sadness of loss.  Loss of the person I loved and knew.  So I do hope my decision was the right one and we can leave J.R. in the familiar place he has lived these last few months.