fun house mirror

Sometimes caring for a person with Alzheimer’s can be like living in a house of mirrors.

December 7, 2012 – Like attractions at a carnival, Alzheimer’s can take many forms on its journey through the brain. With Ken’s parents, Rose and Nick, we were groping as was the medical community.  No one could give us directions, or suggest how to cope with any kind of dementia.  Even if they did we still had no idea where we were going or what to do.  I suppose we could call that 1970s first ride with Alzheimer’s “The Shadows” as we felt our way in and out of a maze leading us blindly into a the hall of mirrors where life as we had known it wasn’t making sense.


I don’t recall anyone saying the words, “Your mother – father – has Alzheimer’s.”  It was either confusion, getting older and forgetting, senile or second childhood.  Not knowing what to do with no particular medical advice caring for them was continual trial and error.

Both had lost their creative interests.  Nick no longer cared for gardening and she forgot how to knit, sew and crochet.  Rose was able to cook a simple meal and keep her home tidy.  All else: shopping, doctor’s appointments, personal needs were done by either me, Ken or, if she were free, Ken’s sister.  Nick was fairly placid except when challenged or asked to do something he didn’t want to do, then he could become withdrawn, stubborn and/or combative.  All the while the family stumbled blindly through caregiving.


Then there’s the elevator ride making an express descent from way up to way down.  That was how I thought about Alzheimer’s attack on my mother.  Mama’s AD trip took her from a wise and wonderful woman to an obedient and pleasant little girl.  The elevator door never opened as it plunged continuously down.  My father and I were ever saddened as we watched this once-amazing woman fall from motherhood, devoted wife, young woman, and young lady to the pleasant little girl.  Only at death did the elevator door open and allow her spirit to soar.


A roller coaster best describes what Ken and I have been riding.  From the beginning we are were buckled-in partners as this never-ending ride has taken us through green pastures, dark valleys and rugged mountains, but it never stops.  With Ken, though, he did slip away periodically and either one or the other of his different personalities took his place:  Mr. Hyde who had a family and was married, but not to me.  Then there was Buddy who was about 12 and lived in our house with his mom, dad and his sister Loretta.  As an intruder, I still rode the roller coaster with either Mr. Hyde, Buddy and/or Ken.  Eventually, the two fictional personalities disappeared. Ken comes and goes and I feel I am mostly alone on the roller coaster.  For me the ride seems endless as I seldom have a chance to get off.   Even if I do take a quick break one foot is always on the Alzheimer’s Roller Coaster.


While each experience has been different, they were, and are, ultimately the same:  Alzheimer’s ravaged the brains of all four people. With Rose and Nick, and with my own mom I learned to be an Alzheimer’s caregiver by doing.  Today, and with a self-proclaimed earned “degree,” my caring for Ken through these past eight-plus years has been my master’s degree.  Every experience has added precepts and hands-on experience to my ever-growing education.  I am also grateful that in today’s Alzheimer’s World there is additional help and information at my fingertips.  However at the same time I realize that not every suggestion or tip is guaranteed to be a “fit” for Ken.


As an example, the Alzheimer’s Reading Room is basically written and edited by Bob DeMarco who has been the valiant caregiver for his mother for the past eight years.  Bob has had wonderful success using methods he has developed while caring for Dotty.  Dotty, by the way passed on in May of 2012.  Almost up until the very end she was communicative.  What a blessing.

However, even before I read many of Bob’s suggestions, Ken and I also lived each day in a normal way, and I vowed that we would strive continually to be as normal as possible.  Yet AD ignored my plan ravaging Ken’s brain until we could no longer function as normal without additional help for me. 


My point here is to remind caregivers that no matter where you are in this journey continue to strive to be the best caregiver you can be, using as many tips and suggestions as you can find, but when you see that additional help is needed then seek that help no matter what.  For me I still care for Ken at home with the help of two alternating caregivers from 10:00 a.m. to 7:00 p.m.  That’s what I chose and that works for me.  Others may find their solution in a care facility or a smaller group-type home, and there are a multitude of those out there.  When you decide which will work best for you begin researching and, if you can, get references whether it’s for a home caregiver, a caregiving agency or for a care facility.  Remember first and foremost, when you have to change rides you want the very best for your loved one no matter what Merry-Go-Round you’ve been riding.



Caregiving In The Middle Stages of Alzheimer’s Disease

The important thing to note for caregivers is to have patience, flexibility, and structure. As the disease progresses, caregivers need to update their daily routines to adapt to the needs of the loved one. Getting frustrated or upset at the new changes will only add to the issue and cause undue stress on you and the loved one. The loved one can’t help what is happening to them, but you as the caregiver can control your reactions and how you handle situations.


How do you know if someone is in the final stage of Alzheimer’s disease?

It’s important to remember that each person is an individual and may not experience all of these symptoms. However, these are the most frequent signs that a person is in an advanced or the final stage of a dementing illness.



Originally posted 2012-12-08 12:39:17.


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