Posts Tagged writing

Before the darkness came…

Yeah I know that was melodramatic but that is how dementia and Alzheimer’s is, it is a darkness that looms over everyone’s heads.  But I want to talk about the light instead of the dark; tell you a little about mom before she was stolen from us especially since this weekend is Mother’s Day.  Let me first say that mom was by no means a winner for mother of the year.  She did some things that I don’t want to talk about that weren’t always the nicest or best to do.

She could tan our hides with a spanking, made us do all kinds of chores while she sat and relaxed, made me clean the fish that she caught when she used to go fishing with one of my sisters (oh how I hated doing that with a passion!), was overly protective and didn’t allow me to do some after school activities in high school, and got into a major row with me on the day of my first wedding. Sometimes mom was all about mom but I want to show that she was a mother to me in the best sense at times before she became ill.

She did do some very motherly things in her time.  I can recall having the measles and being bored out of my mind stuck in my room so she made a bit of a bed on the sofa and let me lay down there to watch television.  She wasn’t able to travel when she had all of my siblings but when it was just me, she sparked the travel wanderlust that I now have by taking road trips out west.  And she could drive with the best of them! Lead foot is what daddy used to call her.

I got to see things that many of my friends in elementary school wouldn’t get to see (if ever) until they were adults.  Part of the reason we went out west a lot was because at the time I had terrible asthma and doctors told her that being in the Arizonan climate would be good for me.  They were right.  So before I was even ten I had seen big cattle ranches in Texas, spent the night in a log cabin near the Grand Canyon (I also nearly gave my mother a heart attack when I tried to climb between the railings to peer into the canyon), had a blast at Disneyland, saw them making a movie in Old Tuscon with Angie Dickenson and Robert Mitchum (who waved at me), and nearly gave mom another heart attack by crawling into one of those Indian cliff dwellings in Arizona even though the sign clearly said Beware of Rattlesnakes.

Mom took care of me through all of my injuries and sicknesses – with a serious side of being fussed at about them – the best she could.  There were many trips to the ER for my asthma, a broken leg, stitches in my hand from a broken glass while doing the dishes, and your usual sundry mishaps that many children go through.  But she also pawned her wedding ring to help pay for some of my medical bills because money was so tight.

When I first made her a grandmother she transformed right before my eyes into a sweet and loving woman.  Who are you and where is my mother I thought.  You see mom was never vocal or demonstrative in her showing of emotions except to dad.  I really cannot recall her ever saying I love you to me or being that touchy feely, but with her grandchildren? Oh yeah!

They could do no wrong and she would cook their favorite things for them to eat when we came to visit.  Dad taught them how to play (and cheat at) poker and she would talk your ear off about them to others showing their pictures to you.  She didn’t have an accordion of pictures that fell from her wallet like you’ve seen on some cartoons but she did have a few.

Once when she was holding my then newborn daughter for me at the mall while I went into a store for something she disappeared and sent me into a panicked frenzy when I couldn’t find them.  Turns out mom was walking up and down the mall showing off her grandbaby to anybody she could corner.

She always, up until dementia took her, had a smile and a big hug for her grandchildren but I’m at a loss to recall getting hugs from her.  It broke my heart to see my children – the youngest grandchildren she had – lose their grandmother when they were so young.  Oh she was physically still there but that was about it.  But to this day my son can still recall her spaghetti and carrot cake fondly and that makes us both smile.

So for this week I too would like to remember the better things about mom instead of the Alzheimer’s.  Happy Mother’s Day mom and Happy Mother’s Day to all of you.

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Mom and the telephone

Mom could use the telephone up until the dementia took over and would drive me absolutely bonkers doing it!  They had this very old fashioned rotary dial black phone (thing was so solid and heavy you could’ve hurt someone with it) on a stand in the kitchen with the yellow and white pages phone books underneath and this black personal phone book with all of the numbers of the children, friends, the car repair guy, and her beautician.

In the early stages of her descent she would call me up and ask me to look up a number for her in the phone book (this was before everything was online) and I would be totally exasperated.  “Mom, why are you calling me to look up a number for you?” I would ask.  And that is when the excuses would begin.  Excuses like her phone book was out of date, she couldn’t find the number, the print is too little for her to read clearly, and of course the….”What? You can’t do this for your mother?” comment.

It drove me nuts but I didn’t think much of it other than how it was a pain in the rear to me; I really didn’t try to do something, anything about it.

Slowly it began to change and it wasn’t a good one and sadly I still didn’t quite know what was going on or what to do.  She began to call me and say that there was some man outside in the yard and what should she do.  Or that there was a strange man trying to break into the house would I call the police for her.  Or that she didn’t know where daddy was and was in a slight panic.

Guess who the bad man was that was trying to break into the house, etc.?  Yes, it was dad.

I knew each and every time it was dad who was outside trying to get in.  Why was he trying to get in? It was because almost as soon as he would go outside to take out the trash or get something from the car or anything that involved him going outside, mom would lock the door not remembering he had stepped out.  Sometimes he remembered to take his keys with him and sometimes he didn’t.  It was when he didn’t that I got those calls from mom.

I would try and calm mom down while working slowly and painfully at getting her to understand that it wasn’t a strange man skulking around the place,  it was her husband out there and that she had locked him out – again!  This worked for awhile until the awful combo of dad’s health declining along with the dementia taking more of mom meant things were transitioning from annoying to dangerous.

I don’t recall how I finally convinced my parents to let me have a key to the house – they were both becoming more paranoid and increasingly withdrawn from the world – but thankfully I did because one night I got a phone call not from mom but from their neighbors across the street.  Mom had locked him out again and he hobbled slowly and painfully across the street to ask them to call me.  You see, dad had advancing diabetes (which had not been diagnosed yet) and the nerves in his lower legs were racing straight into permanent nerve damage.  Poor dad must have been so embarrassed because he had been working his level best at keeping moms declining mental health a secret from everyone.

So I made the half hour drive from where I lived telling my family that I had to help dad/grandpa back into the house because he was locked out accidentally.  Mom was all flustered when I opened the door to let me and dad in; I made sure that I made the announcement of “Hi mom, it’s me!” before I walked in because she was also beginning to become a bit violent sometimes in this stage of the disease.

After that time I think dad got the clue to always keep his keys on him.  To help them with phone issues I bought them this big button phone and keyed in all of our numbers so that all they (by this time mainly dad) had to do was push #1 for me, #2 for my sister Eve, and so forth.  When they both entered nursing homes that phone went with dad to his room.

It was a rough patch in the road of being a caregiver; just one of many more to come.  And right now I wish there was a button I could press to hear their voices again on some device; their healthy not sick voices.  I’ve only got one VCR tape somewhere, I hope, that has my parents on there talking to me and my sisters at a family dinner.  It’s the only thing I have of them besides some photos.

Today there are videos on phones and other devices where you can capture your loved ones for posterity.  You can carry those memories with you or have them on your computer or tablet.  I highly recommend that you do because one day you will want to see and hear them again as they once were or to share them with family that never had the chance to know them.

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This is so embarrassing, mom!

Mom before she became ill used to be a pretty good housekeeper.  Let me rephrase that, she used to make me do a lot of the housekeeping.  She had, after five children me being the last at number six, perfected the art of giving a child chores to do while she sat and watched soap operas or visited friends.

Oh she still did their bedroom and the laundry and the cooking but the drudgery chores of dusting, dishes (we didn’t have a dishwasher unless you counted me), and every Sunday whether it needed it or not…mopping the floors.  When I grew up and moved away she was still pretty good with the housekeeping but after dad retired he ended sharing in the duties; eventually taking them over when she wasn’t cognizant enough to do them.

One of the first things I started to notice changing in mom besides her memory was her personal appearance.  Back in the day mom was a sharp dressed woman.  And by back in the day I mean before I was born.  She had her hair styled, wore pearls, and the fashions of the day.  She even had one of those creepy as heck fox furs where the foxes heads were still on and each head held onto the tail of the next fox.  Creepy!  But comfort took over fashion and right before the dementia came knocking she was into jeans and sweat shirts or some other style of comfy top.

But for a long long time she never ever missed a hair appointment.  I mean you could set your clock to her every other Wednesday hair appointment.  And then I began to notice the trips to the beauty parlor became less and less until she stopped all together.  She made all kinds of excuses (mostly about the cost) but she stopped going and started to wear baseball hats.  Huh?

She was still making the effort to stay presentable but then that started to going downhill too.  She’d throw a hat on her head without bothering to brush her hair.  The tops she would wear would be old and stained; items she would’ve pitched before or would’ve gone straight into the washing machine.  And then it got to a point where she would wear the same things over and over and over until dad or me or my sister would manage to grab the grubby garment and throw it into the washer.

And then even that became a game of cat and mouse as she would actually hunt down the item she last wore and put it right back on, taking it out of the hamper or washing machine if it hadn’t been turned on yet.  After awhile dad began to just give in and let her wear whatever she wanted if it made life easier for him.  It drove me nuts and was so embarrassing to be out in public like at the grocers and here was mom (who we had to keep an eye on to make sure we didn’t lose track of her) with her hair all sticking out from under a ball cap wearing jeans and a shirt that you could read her most recent meals off of.

I was torn between acting like I didn’t know her and trying to figure out what to say or how to react to the questions and stares that I think in all reality were just my imagination.  Dad and I both knew something was wrong with mom but neither of us knew what to do about it other than try and deal as best we could and to keep her safe and content because trying to get her to a doctor would’ve been like pulling hens teeth!

Now when I think about that day in Target where I rolled my eyes at her appearance I also recall that she began to like collecting shirts with funny pictures and sayings on them and at the time she still knew who I was, could talk even if it was repetitive many times, and could still do quite a few activities of daily living.  She was still mom even if she was unraveling before our eyes.

I wish I had know more about Alzheimer’s and dementia then and had taken time to help mother instead of being angry and fussing with her.  Being a caregiver can be so very exasperating at times…and it worsens when you are doing it in the dark.

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Societal feelings towards mental health

Individuals with mental health issues be it bi-polar, schizophrenia, depression, or dementia are still looked upon differently than say someone who has a disease like asthma or Parkinson’s.  It’s not as bad as when they had horrific mental institutes that they locked people away in but there is still a stigma attached to it in some places with some people.

Depending on ones socioeconomic status and what culture you may be from, how families think about and handle mental health problems can really vary.  Being in a lower income status may limit your access to information and care for mental health problems;  sometimes old wives tales become part and parcel of the diagnosis and treatment. And in some cultures they won’t even mention or acknowledge that a loved one has a mental problem.

There may be a tendency for the person with the illness to be taken care of at home by whomever is delegated to have that responsibility and that person may not have much information about the disease or the tools to properly take care of the person with the illness.   I’ve even heard of cases where even when the person with the illness was taken to a medical facility their family still wouldn’t mention by name what was going on and heaven forbid it was discussed outside of the home with friends or associates.   Even I was reticent at first to discuss what was going on with mom to anyone other than family because of fear and embarrassment.

In a phrase – its just something that is not discussed!  But thankfully it is getting better.

True, one may not be able to get the full battery of tests at the cutting edge research hospital if they are far from being rich but that doesn’t mean they shouldn’t be able to get the best care they can outside of going to a public clinic that may not have on staff the medical personnel that can properly take care of things.  I still feel to this day that if mom and dad had more than just their pensions and I knew more about what was going on they may have gotten better treatment in the earlier stages of their diseases.  Guilt is a bear…

One of the best weapons against Alzheimer’s, dementia, or any disease is knowledge!  There is great power in knowledge.  Not everything you read on the internet is gospel but it may be a jump off point to get you going in the right direction.  Find out where the local chapter is of your Alzheimer’s Association and avail yourself of it’s free information which runs from a support help line to pamphlets they can mail you to a library where you can check out books.

And don’t forget about the support groups.  But I must make a confession here about support groups.  By the time mom was in a nursing home and I wasn’t as frayed around the edges (but still unraveling bit by bit) every support group I found in my area did not fit my needs.  They all seemed to be filled with spouses or with people whose loved one was still in the very early stages of the disease; this was my mother and she had jumped into an advanced stage.

So I never went to one…but I did find an online support group that saved my sanity!  It met every Friday and it contained men and women caregivers and former caregivers from across the nation who were at all stages of the disease.  To this day I am still friends with two of the women I “met” in that group and we’ve all actually met in real life.

Don’t let embarrassment, shame, or cultural mores hamper you from doing the best you can as a caregiver for your loved one and yourself.

Alzheimer’s Association

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