Posts Tagged mom

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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Rub a dub dub…cleaning up Mom

Mom used to be good at keeping herself and the house clean.  She had a standing, nothing short of the end of the world would cancel her appointment, appointment at the beauty parlor that you could set your watch to and every Sunday no matter what, when I was a child she would make me mop the kitchen floor.  But as the dementia crept over her it changed that woman into messy Bessy.

It is common for those with dementia and Alzheimer’s to change personalities and habits which includes keeping clean.  Mom went from doing the laundry faithfully to Dad taking over.  I don’t recall if she could no longer remember how or if Dad took over for safety sake but whatever the reason was he was doing it…that is when he could get the clothes off of/away from her.

She would take clothes out of the hamper thinking they were ok to wear again or she would sleep in the clothing that she wore that entire day.  The hair appointments slowed down until they ended and her hair was just there with no style at all.  But bathing? I don’t know what Dad did to keep her clean and to be honest I was embarrassed to ask or to do anything about it.

Mom bathed me, I just couldn’t bring myself to bathe her.  I was beyond weirded out – super awkwardness.  The most I could do when I dared try to tidy her up was to get her into the bathroom by saying I wanted to brush her hair – or something along those lines – and then while talking to her constantly to keep her occupied and calm, I would do my best to give her a sponge bath… to an extent.

For those of you who have had children do you recall when your little ones loved playing in the water at bath time and then one day they were terrified of it or would have tantrums?  Yep! Almost the same thing with adults with dementia.  As I wasn’t about to try and cajole mom into the tub lest one of us (probably me) would get hurt I left it at a nice warm soapy wash cloth nice and I’d spot clean her face, neck, arms, under arms, and legs.  Well, the legs if I could get her out of her pants which didn’t happen often; the shirt was a tough enough job to peel her out of that many was the time it was just whatever I could get to with pushing up sleeves.

But her private parts? I couldn’t do it! Just thinking about it I feel awkward.  But it is very important that those parts of the body be cleaned because they are prone to the skin breaking down and becoming infected.   Even more so if your loved one has or is beginning to have issues with incontinence.   If you cannot afford to hire a home care worker who knows how to bathe someone with dementia and you have to do it, what can you do?

Here is a article from Caring.com which has some useful tips on how to deal with bathing mom (and dad too) which I found to be very helpful and informative.  At the end of the article they mention that if your loved one really isn’t for bathing then you could talk to their doctor about anti-anxiety medication to help with the process.  When mom entered the nursing home she became even worse about bathing, eating, and everything else because she was terrified! (more about that in the future) She was eventually prescribed some medication which they only gave her before bath time which, along with a kind nurses assistant, made bathing easier.

It’s a scary road to travel for you and your loved one.  Don’t be hard on yourself;  just keep trying until you find what works.

 

 

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Coping, stress and caregiving

When I needed to get things done for mom and dad I was so singularly on task that I would go at doing what needed to be done for them for however long it took until there would be a break in the action.  I think there were times when I had an out of body experience almost when I had to do some very hard things.  There would be an emergency and I’d take a deep breath and part of me would step back while the other would dive right in.  I saw blood, pain, sadness, wounds, amputations, injuries, and eventually death and didn’t whine, whimper, cry, or even bat an eye when I was in the moment.

I once stared down a doctor who got snippy with me about a wound my dad had that wasn’t healing from his diabetes.  I was questioning  if amputation was really necessary; was there any other way.  He pulled back the dressing and  – well I won’t say what I saw but it wasn’t pretty – thinking it would just make me squeal like a little girl.  At that moment part of me stepped behind me and cringed while the other part of me was quite deadpan.  The amputation had to be done but I wasn’t going to let dad sign a thing until I was totally convinced there was no other way.  When it came to taking care of my parents I was a force to be reckoned with; no room or time to wimp out.

But what about when those moments were over?  Between emergencies I was in a constant state of stand-by.  Never turned off my phone, would be hesitant to go on vacation, neglected to feed myself sometimes, developed panic attacks which I never had before, had irregular sleeping habits, and sometimes would have bursts of anger and/or tears out of nowhere.  I don’t recall having any nightmares but I did have some oddball dreams once in awhile.  When my care giving days were over I sat there in a fog wondering what was I going to do now.  I had been so focused on my job as a caregiver that even though there was a sigh of relief over not having to do it anymore and that my parents were no longer suffering; I was lost.  I almost missed doing it and actually felt useless.

Even now when I see, read, hear of, or talk to someone about care giving or Alzheimer’s or diabetes I have a bit of a inner twitch; it pings memories.  I acknowledge those feelings and then they fade away – most of the time – unless it’s just one of those days where something as simple as  an old picture or seeing a mother and daughter out together for lunch sets me off and I fight back the tears…or just cry and cry.  And I won’t even mention the panic that seizes me sometimes when I can’t remember where I put the keys, someones name, a word, or why did I just walk into this room.  I have to go through my training and tell myself “You know the difference between just momentary forgetfulness and dementia, calm down!”

Being a caregiver takes a lot out of you.  You are taking care of someone but who is there to take care of you? We all need help sometimes and there is no shame in asking for or seeking out help.  In fact it’s one of the best and smartest things you can do; nothing embarrassing about admitting you need help.

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Saw it coming but didn’t see it coming

Back in the day before we the public were made more aware of all of the different forms of dementias (dementia is the general term for a variety of diseases that effect cognitive ability, ie. Alzheimers, Dementia with Lewy Bodies, Vascular dementia, etc.) when an older person began to loose their memories it was passed off as just old age or being senile.

Mom began to become a bit “odd” after her one and only son – my big brother – died suddenly after a brief illness; he was only 48.  Mom didn’t attend his funeral because it hurt her too much and she had this serious phobia about funerals, she didn’t even attend her own mother’s funeral when I was a little girl it was that bad.  I attributed the change in her to depression and while that was in there, that other monster slipped in there with it.

When Alzheimer’s was slowly sneaking its way over my mother, the symptoms manifested themselves at first as minor forgetfulness.  She would forget where she put something (don’t we all) she would forget how to call someone on the phone without the name being in her big black phone book, and the biggie that drives every family member and caregiver up the wall – she would repeat herself.

She used to drive me up a wall calling me on the phone to look up a phone number for her.  I tried to tell her to just use the Yellow Pages (yes, I’m really talking back in the day aren’t I) to find said number which would get me either her laughing it off with some excuse like “My glasses need to be fixed” or “I don’t have a new phone book” or she would just give me heck for not helping my mother.  She was good at laying the guilt down.

Now mind you we can all do that repeat thing.  How many times have you started a story and the other person cuts you off by saying “You told me that already…”  we’ve all done it at least once.  But mom was beginning to do it a lot.  I was uncomfortable with it and knew something wasn’t right but I didn’t know what it was and had no idea of where to turn for help.

I told my siblings about mom’s behavior and they just laughed it off declaring that she was old it’s what’s to be expected.  Really? Now that thought just irks me to no end but back then in the late 80’s early 1990’s it was somewhat accepted.  So I kept feeling something was wrong and folks kept telling me it was just her getting older.

PLEASE!!! If you have a loved one that is starting to forget more than you think they should or you have any other suspicions, try and talk it over with someone who will listen to you.  I wish to heck I had done that back then.  But be warned, you may face walls that will get in your way.  Walls like your loved one being in denial (and understandably afraid), other family members being in denial, the spouse of your loved one being protective…and in denial.  Oh heck, denial with a side of being afraid will get in the way!

When in doubt call your local Alzheimer’s Association and they will talk you through your worries and send you information if you request it.  You might also be able to ask your own doctor some questions if they are amenable to it.  But I didn’t know any of that until it was too late and then all hell broke loose.

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