Saturday, May 15, 2010

When Reality Hits You in the Face

As most of my readers know....my mom is in a Dementia Unit at a local nursing home and I visit her at least five days a week.  There is one other person who gets regular visits from her child.  The rest of the residents in my mom's unit see a family member maybe once a week.  Somedays I have a good visit with my mom....we talk about what she has eaten, what she has done that day, who has visited her, and what is coming up.  My mom was always a reader (that is where I got my love for reading)...she does not read much anymore.  It breaks my heart to see her sit and stare.  Even when I am there she just sits and stares.  Bad days....she demands that I take her home....they all demand that at some point.  Those days I leave the nursing home very tired.  I have done a great deal of research since this journey began for me and my parents....one, because I wanted to know what I was dealing with...and when I found out my second reason was to know what the natural course of dementia is?  I discovered that depending on the cause of dementia, the course may vary. In the case of Alzheimer’s disease, the time between first obvious symptoms, through gradual loss of cognitive abilities, to death ranges from 7 to 10 years. Vascular dementia which usually results from the blockage of small blood vessels in the brain is a lot different.  I don't know which one my mom suffers from.  As the dementia progresses, my mom will need increasing care.  I found a great story about a dementia patient...and it really hit home.  "In the past, Harry had been a very competent driver. Recently, He has become lost several times while driving, and has had several accidents because he can’t keep track of traffic patterns. Despite this Harry becomes irate when his wife tells him he can’t drive. He demands to use his car, insisting that it is his right to drive it."  My mom is Harry in real life.  She got lost one day and called my dad crying because she could not remember how to get home.  I knew something was wrong then....but how do you take your parent's keys away from them?  My dad was easy....Dr. Powers held out his hand and made my dad give them up....my mom...not so easy.  She is one independent cuss...(now you know where I get it.)   The second story was about a woman named Kathy.  Fortunately my mom did not do this....ohhhhh noooooo.....she left a pot of water for tea boiling on the stove.....for how long?  Who knows....I ran home during my planning period...and something told me to go in the kitchen.  I caught it just before it was a disaster.  Anyways, back to Kathy...."After washing her hands, Kathy left the water running in the bathroom and flooded the house. Lately, she has stopped doing any cooking since she finds that she can’t remember how to cook favorite recipes that she has prepared for years. Last week the police called her daughter after Kathy became lost while walking to the neighborhood market."  I was going to be this daughter.  I felt it in my bones...and the night I called the police because my parents were missing was the worst night of my life.  No one ever wants to make that call...believe me. The problems that are brought about by dementia are frustrating ...not only for the person with the problem....but it is frustrating and alarming to the family. The frustrations can lead to everyone involved becoming irritable.  In my case they led to my mom becoming quite demanding, particularly because she doesn’t remember that she has a problem. She resent sbeing told that she can’t do things she has "always" done...and does not understand why I cannot take her home.  It is sad...she is home.  I would love to take my mom anywhere....and enjoy her company....hug her....talk with her about important matters.....sing with her....but the lady at the Dementia Unit.....is just someone housed in my mom's body.  My mom is not there.....traces of her are....but not the her I have always known.  I am currently seeking custody of my mom....because at times dementia can produce a degree of paranoia, which cause my mom to see me  "taking over" her control. She refused to put my name on anything that she owned.  Do you know how sad this is?  I am going to have to sell everything my mom has....to keep her safe.  Everything!  She will be allowed by Medicare to have 2000.00 in the bank.....period.  My aunt Shirley told her 10 years ago...to put my name on everything and get her name off.....but it was already too late.  Funny side story here....when we cleaned my mom and dad's room....after my dad died....I found all kinds of things that were mine and Franks...hidden under the mattress...and in pizza boxes.  Usually, someone with dementia thinks their caregivers are taking from them...in my case...it was the opposite...leave it to my mom!  You have to find humor where you can!  My mom has retained a considerable degree of social skills. She will laugh at a joke...usually it is because everyone else is laughing and  not because she understands it. She carries on conversations, but answers with vague phrases.
People ask me often...."Is your mom getting better?"  I want to scream, "NO!"  There is not getting better from dementia.... the course is usually a relentless decline in functioning. "When dementia becomes severe, a person may require much help with personal care, such as toileting, bathing, dressing and feeding. Finally the person becomes totally dependent on his caregivers, loses the use of language and is largely unaware of his bodily functioning or his environment."  I never dreamed in my whole life that I would experience something like this....but here I am....and I know there are probably others out there....going into this...or in it too....and I hope I can share something with you....that will make you smile....because if you don't laugh about some stuff...you won't survive having a family member with dementia.  Have a great weekend....and love your family real good.  God Bless!

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