Isaiah 6:8

8 Then I heard the voice of the Lord saying, “Whom shall I send? And who will go for us?”And I said, “Here am I. Send me!”

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!

6 comments:

Edie Marie's Attic said...

Good morning Karen!

What a great post! My mom also suffers from dementia and I relate to everything you have said. It's so good to know you're not alone. Mom is in a nursing home in our hometown so I don't get to visit her very much. My brother oversees her care. It's hard to be a part of this in the long distance mode. I wish I could visit her as you visit your mom but I accept the way things are. I offered for her to be here with me when she was still a lucid person but she refused blatantly, hurting my feelings beyond belief. But things are the way they are, she's in her hometown and accepts her new "home" to the best of her ability.

Thank you so much for sharing your story with all of us. It makes me feel that I'm in very good company!

Big hugs,Sherry

Mary said...

Last night my oldest son said that my mom told him that she didn't remember how to get to the high school gym. This is where we park for games. It's really scary to realize that my mom won't be there like she has been.
I worked in a nursing home for a couple of years. One lady with dementia said the "information goes in, but then it just goes around and around." Great description! Then there was the lady who asked everybody to call her a taxi. When she moved to a different facility (right next door to the other one) I was worried about her being in a different place, but when I went to visit her, she was asking everybody to call her a taxi!
I have a friend who said she was finding Christmas ornaments all over her house because her mom helped her decorate. I told her it was just like finding nice surprises (like an Easter egg hunt!)!
You're wise to get legal custody. It will make things a lot easier and take a load off of your mind.

Sweet Tea said...

I lost my Dad to Alzheimer's 3 yrs ago, so I totally get what you're talking about. He was diagnosed almost 13 years before his death. It is a terrible, sad thing to watch someone you love go through this. So glad you have your husband to hold your hand as you deal with your Mom's issues...A sense of humor and your Faith are good companions, too. ((HUGS)

BTW, thanks for stopping by my daughter's blog to encourage her yesterday. *smooch*

♥Trina♥ said...

Your mom and John's mom seem so similar in so many ways. Billie used to read all the time. Now she says she is going to read the stack of books beside her phone, but that same stack of books has been there for two or three years.

Billie's big obsession is her car. Her doctor said she COULD NOT drive, but she still swears she could remember how to get to the store. Even IF she could, I can imagine the problem that would arise...she would go numerous times a week because she doesn't remember that she went to the store with her neighbor, so she thinks there is nothing to eat in her house.

I dread the day when the decision to put her in the nursing home actually comes to frution. It's been "in the works" for a couple of years, but I think Connie deep down struggles with it, much more than the 3 boys do.

We've talked about this so much. Alzheimer's is a horrible, rotten disease. Anyone who doesn't understand can't even begin to imagine. And that is evident by people asking if your mom is getting better. Sadly, for most Alzheimer's patients, their health is WONDERFUL.

I hope you enjoyed your day seeing Kat get her degree. :)

Belle's Blog said...

I had my own experience with this and it's so hard. There are no words to explain the pain of watching a loved one so dear in pain!
Praying for you ~ In Christian Love~ Stacy

Queenie Jeannie said...

What a horrible thing to go through. Very, very sad.

BIG HUGS!!!!!!!!!