Posts Tagged health

Shame and Embarrassment

About not having done a post in entirely too long (I am sorry about that) and remembering a time when I was so embarrassed about my mother and her Alzheimer’s.  I think to some extent we all have moments of being embarrassed by/about our parents – especially during the teen years – but when they become ill that takes on a new form.  Why was I embarassed? My mother was sick, she had a disease that there still is no cure for, it wasn’t her fault, she wasn’t the only one with Alzheimer’s in the world, she was old…and there were too many times I was ashamed (yes I said it) and embarassed to be seen in public with her.

Well, for one, when out in public with her I was always freaking out that she might wander off but more so I was ashamed of how she looked and acted and by the stares from others.  If I could reach back in time and smack some sense into myself I would.  Mom went from being a woman who had a regular you could set your watch to it appointment at the hair salon to looking as if she didn’t know what a brush was.  She went from keeping herself and the house clean to both being a total mess.  And of course she went from knowing how to have a conversation with people to heaven only knows what would come out of her mouth!

And I was ashamed to be seen with her.  I was embarrassed that she was sick with a disease that at the time I had no idea what the hell was going on and like too many ill informed people considered it a mental illness of the type where “we don’t talk about that family member” type.  When I did go out with my parents (by this time mom and dad were pretty much glued at the hip) I would walk some steps behind or in front of them because I didn’t want to be associated with this old sick couple.  I didn’t mind if people thought I was with dad – he still had both legs and the diabetes hadn’t taken over yet – he looked and acted “normal” but mom? Ugh!

Her hair was often not brushed, she wore clothing that was too big for her sometimes and often you could read their breakfast menu by the stains on her shirt which often was on it’s 3rd day of wearing.  I was ashamed, embarrassed and hurt.  I know about the hurt now because, well, you know how hindsight is.  I was hurting because my mother was sick, I didn’t know what was going on, I felt powerless and I needed to have my mom be my mom!  I wanted to have a mom like everyone else I knew – not sick.  As the dementia progressed and she began to become violent sometimes when we would try to go out with her or have people come in to help, I gave up trying to go out with them unless I really had to.  It was just as well because it was shortly after that that they both became too ill and had to go into homes.

If you are a caregiver who is dealing with a loved one who has dementia or any other disease you will feel moments of shame and embarrassment.  You can count on it happening! Why? Because we are humans and we have our shortcomings and because when we have someone we love who is sick our emotions will and can run the full spectrum of emotions.  Don’t beat yourself up over it.  Learn how to deal with it as best you can.  First and foremost learn about your loved ones illness so that not only you will understand what’s going on but also so that if the need arises you can inform others that your loved one has such and such disease.  It’s entirely up to you if you wish to do that last part.

They are sick and need your help and trust me, inside they are fighting the twin monsters of shame and embarrassment too!  I wish during those times with my mom I had shown her more kindness or at least tried to.  It took me a long time before I learned to go where she was and find some joy in the midst of all that ugliness that was her Alzheimer’s.  I wish I could’ve said “My mother has Alzheimer’s” when met with quizzical stares with my head up and now down.  It took me a long time before I reached that point.

This week their annual grave blanket with candy canes (mom’s fave candy next to chocolate) was placed on their grave.  Merry Christmas Mom and Dad.

 

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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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Would you want to know?

I’m taking a bit of a detour from the memoirs and presenting some information to you; information that is scary, hopeful, and well…informative!  Testing for many diseases exist that can range from a scraping of your throat, sticking that awful swab up your nose to test for the flu (when that was done to me I thought about that scene with Arnold Schwarzenegger in Total Recall), to blood being drawn to be run through a myriad of tests.  And in many cases we want and need to have those tests done so that we can treat the disease.  But what about for something that is much more daunting like cancer or Alzheimer’s?

Would you want to know if you were a high risk for such diseases as those before they ever began to manifest themselves?

Recently in the news Angelina Jolie had a double mastectomy in order to prevent the breast cancer that tests indicated she was highly likely to get; she has since announced she may have further surgery to prevent the high potential for ovarian cancer which claimed her mother.  Knowing that I had a high chance of developing any devastating disease, would scare the hell out of me to go in and be tested for.  But unlike with Alzheimer’s, there are cures for those cancers and some very good preventative measures which given the option I’d probably do.  But would I want to go in for a blood test that could tell me if I had a chance of developing this form of dementia?

Here are some articles about a possible blood test for Alzheimer’s here and here.

The key word here is potential.  The test is still being developed and as with many medical discoveries is in need of funding and more years of research.  But if it were a genuinely tried and true test, would you take it?  The aforementioned articles talk about if you knew would you change things about your life like what you ate, how you exercised, if you would have children?  What a freaking conundrum!  On one hand knowing your risk factor could help you in so many ways to modify your life; to make arrangements before they were needed and while you could still have control over things.  But on the other hand, life is short and precious and why should you wait until you have a horrible diagnosis before you learn how to live life.

We should take care of these vessels that hold our spirits the best we can anyway.  After all until science catches up with science fiction, these are the only bodies we are ever going to have.  We should carpe diem every chance we get instead of postponing doing this, going there, seeing that, spending time with someone, etc.

My family history contains one mother, one first cousin, and one maternal grandfather who had/have Alzheimer’s.  So far all things considered I’m pretty healthy for my age (and I am not about to tell you that number lol) but would I want to know?  It has been scientifically shown that sometimes the disease does run in families and sometimes it doesn’t.  That’s just how the genetic dice roll.  But would I want to know ahead of time? I unequivocally say NO! I’m anxious enough as it is just waiting to get my cholesterol numbers back from my physical.  I’d have to be sedated while waiting for those test results which could either free or condemn me.

I’ve learned since being a caregiver to not put off things and to enjoy life the best one can because there is no promise of tomorrow.  I could have a heart attack, get hit by a bus, eat some tainted food, or develop dementia.  I’d rather enjoy my life as well as I can and do my very best to stay healthy without having that manner of cloud hanging over my head.  Knowing that – if positive – ahead of time would send me into a spiral of depression which wouldn’t improve my standard of living one bit.  I can’t and don’t want to live in that kind of fear (even though sometimes I do)…I want to live, period!

But your mileage may vary and you may want to know.  And that is your right.  I just hope that as they work at improving this predictive blood test that they work equally hard at finding a cure.

So would you want to know; would you take the test? Please share your thoughts…

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I am sandwich – hear me squish!

The Sandwich generation is a generation of people who care for their aging parents while supporting their own children.

According to the Pew Research Center, just over 1 of every 8 Americans aged 40 to 60 is both raising a child and caring for a parent, in addition to between 7 to 10 million adults caring for their aging parents from a long distance. US Census Bureau statistics indicate that the number of older Americans aged 65 or older will double by the year 2030, to over 70 million.

Carol Abaya categorized the different scenarios involved in being a part of the sandwich generation.

  • Traditional: those sandwiched between aging parents who need care and/or help and their own children.
  • Club Sandwich: those in their 50s or 60s sandwiched between aging parents, adult children and grandchildren, or those in their 30s and 40s, with young children, aging parents and grandparents.
  • Open Faced: anyone else involved in elder care. [1]

Merriam-Webster officially added the term to its dictionary in July 2006.

The term “sandwich generation” was coined by Dorothy A Miller in 1981. (Thanks to Wikipedia)

Being a “sandwich” is nothing new.  Since we stopped leaving our elders out on an ice block or out in the desert (whatever) and instead they became part of the extended family – which once upon a time was the norm – adult children in some way or another have been taking care of their parents while having their own families to tend to.  As you can see from the definition above, the term “sandwich generation” wasn’t coined until 1981.

What I didn’t know was that there was a menu for the sandwiches and wouldn’t you just know it, I’ve been all three! Well wasn’t I just the blue plate special 🙂  Raising children is a job; caring for aging parents/grandparents is a bigger job; doing both at the same time is just ridiculous!  My appointment book was filled with go to school events for one child or the other, go to care plan meeting for parent/s, doctor appointments for myself, take car in for tune up, go to store and buy clothes for children and parents, sometimes go to store to buy something for myself, get school supplies for children, get Depends for mom because what the nursing home provided was horrible, catch up on what I missed at work when I had to cut out to take care of an emergency with mom, pay parents bills and my own bills, and on and on and on.

There is just nothing so exciting as getting a phone call at work or home about a family emergency and you aren’t sure if you want it to be a child or the loved one you are caring for.

To be honest, I think I preferred getting a call about a child because I knew how to handle them much better than my parents even if they did something incredibly stupid like getting injured in gym trying to show off or throwing up in school and needing to come home.  But getting a call about my parents always sent me into a mild panic because I was still learning about what their ailments where and how serious was serious.  Give me a your son has a fever come and get him any day over your mother fell.  Falling with Alzheimer’s and being in your 80’s is never ever good!

With my children I went in with them to the doctor (that is until they got into their teens then it was embarrassing to them so I stopped) but I had to have all sorts of legal documents to go into the doctors office with my parents.  Well, Dad could handle things by himself for a long time there but with mom I had to show them my power of attorney papers which got old after awhile.  One time when she was taken by ambulance to the ER injured and probably terrified, they wouldn’t let me in to see her in triage until they got her settled.  Not a good thing for me and mom to go through.

“You get her settled? She has Alzheimer’s you twits! (I used a much stronger word at the time) She can’t talk to you or answer any questions and you are probably scaring her to death!”  But they wouldn’t let me go back to be with her for a long time. I had to pace in the waiting room like a caged animal.  I was angry beyond words.  I did all of this while calling up my sister to come out and be with me, calling the then spouse to let him know I might not be home for awhile and dinner was his problem, and leaving voice messages on the kids (at this time they were older teens) phones that grandma was hurt and I was at the ER with her.  Thank God for cell phones!

Later, after the emergency was over, I made it my purpose in life to give that hospital a stern piece of my mind – very stern.  I made sure I talked to the President of the hospital and let him know what happened in his ER and I wasn’t going to have that ever again.  End of story? I got a nice letter from them apologizing and stating that anytime mom had to be in that hospital I was to be allowed right in there with her.  Sometimes in order to care for your loved one you have to put on your hobnail boots and get ready to kick some butt!

Funny picture that, a squished sandwich wearing hobnailed boots….

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A letter to my mother on her birthday…

Dear Mom,

Today is your birthday but as you are in heaven with the rest of the family your celebration – if such is done there – will be different than any you ever had while you were here on this earth.  You left this plane of existence almost four years ago but truth be told you left it long before then; in 1996 if I recall correctly.  That was the year when you and dad fell apart and my life changed forever.

I saw that you were getting “sicker” before the big crash of ’96 but didn’t understand dementia then like I do now.  Matter of fact, back then often it was called “just getting old” or “getting senile” – euphemisms for a disease that still has no cure.  You were at the beginning stage of Alzheimer’s but none of us knew that and in your fear and ignorance you fought us all tooth and nail to not be taken to a doctor.  Eventually you were, I hate to say this so much, committed to a psych ward in a hospital for treatment and observation because you were becoming too much for dad to handle.

What the hell they did to you in there I still don’t understand because although you were released with a prescription to take (which you didn’t, sigh) and you came home more contrite and less combative than when you went in, it wasn’t the right diagnosis.  They didn’t help you one bit, they should’ve, they could’ve.  Or could they have? I didn’t know what or when medications came out to “help” with dementia because at the time I was just trying to figure out what was going on and what to do for you and daddy.  It was a minute by minute struggle sometimes.

Your life was spinning out of control and it was the beginning of mine getting really shaken.  I can still remember too many of the things you went through in your descent into Alzheimer’s which took you from us; took you from being a take no stuff kind of woman who had a tendency to speed sometimes when she drove her Fords to a woman who needed hired people (who sometimes cared and sometimes were only there for a paycheck) to do everything for her.  I can’t even begin to imagine the shame, hurt, and embarrassment you might have felt in there – somewhere.

You forgot me first, momma, you forgot your baby girl first! You forgot the one who took care of you more than any of your other children.  How could you have done that to me?  I still remember the last time you ever said my name to some mysterious person only you could see and then you never said it again.  You said dad’s, your mom and dad, some of my older siblings names but I dropped from your radar first.  Why me?

I was so angry with you in those first years in the nursing home system because you took away part of my life which shouldn’t have been spent trying to raise children, be in a marriage that was pretty much doomed, and work while trying to take care of you and dad because you couldn’t do it for yourselves and I couldn’t walk away from you.

You scared the heck out of the kids when you first became ill.  They no longer had their grandmother and this woman before them was not really her.  They tried to cope and one did it better than the other but they became scarred too by Alzheimer’s.  There were no books written back then to help someone explain to a child why Gran who used to dote on them no longer even recognized them and needed to wear things that babies wore like a bib while someone fed her and several others at the same time.

There were so so many times when I wished I had a real mother to talk to, to lean on, to be a mother to me but instead I had this sick little old lady I needed to watch out for and advocate for.  I got very angry many times and every once in awhile even though you are gone I still have moments of anger when I think about how if maybe you had taken better care of yourself this might not have happened or if I knew better maybe it might have turned out differently.  Hindsight can be marvelously clear and incredibly guilt inducing.

Yes, mom, I wanted you to die at first – I know that sounds dreadful but it’s the truth – because they explained to me what Alzheimer’s meant and what the outcome was going to be.  So one day I growled at you as you sat there in your lost fog; I growled that I wanted you to hurry up and die because this was too much for me to bear and you weren’t going to get better anyway.  You smiled at me but then again you did that to everyone then.  I wanted to be your daughter but I was just another foggy face in the crowd…and I was angry.  Later on I learned to be happy with whatever I got out of you; seeing you smile while I fed you chocolate pudding will always be a happy memory.

I wished that your symptoms could’ve manifested themselves differently.  When you used to repeat yourself – a lot – before the crash it drove me stark raving nuts but later on when you only could do a word salad or just grunts and babbling I missed your driving me nuts.  I was jealous of those who had loved ones who could talk to them even if they had no idea who they were speaking to.

I used to tell people that what looked like mom, her body, was there but the real Dorothy was who knows where.

Towards the end of your time here when they said it was time for hospice I felt as if I had gotten punched in the gut.  I didn’t want to face the fact that maybe it really was coming; your passing.  You were my mother and I wanted to have a mother even if she was just a shell that no longer spoke and didn’t even know anyone was really there anymore.  It took a little while and some kind words from the hospice people to help me to realize the whole circle of life business and stuff and to be able to let you go.

You took a year after being put on hospice to go but you always were a stubborn woman.  I can never thank those hospice people enough for what they did for both of us.  You really liked your hospice nurse, so much so I actually became a little jealous.  I wanted you to acknowledge me and like me in some kind of way.  I needed it.

Being a caregiver is hard! Ridiculously hard! And know what? It leaves lingering effects even after the caregiving is over and done with.  It did teach me a lot of things of which I am thankful for.  It taught me that I can be incredibly strong when my back is up against a wall and that when it comes to defending my loved ones I can be fierce! It taught me a lot about the medical and insurance industry and eventually led me into a new career choice there for awhile.

But it also inserted into me a bit of paranoia about my own health.  Yes, my health took a big hit while taking care of you. And as new medical students get a bit of the “willies” thinking they might have the same symptoms of what they are studying about; I freak the heck out every time I forget a name or where I put something.  It’s during those moments that I have to take a deep breath, step back, and remind myself of the things I learned in college about what is just forgetfulness or being overly tired versus yes that might be a problem.

You are never quite over grieving for a loved one who has passed and even though I thought I was good to go with this grief business, this year I’ve been taken by surprise.  I’m feeling a bit of anger again because even though you have been gone now for almost four years the truth is you left me – yes left me – fourteen years ago.  My life was turned upside down and inside out and every which way and loose because you and dad became sick and the brunt of handling things was placed on my shoulders.

But I also know it really screwed up your lives too.

I sat down quietly one day and couldn’t recall how you sounded or what you used to like to eat (other than chocolate) or even how you looked other than some earlier pictures of you because my memory is all mushed up with images of you when you were sick and even more so of how you passed away.  Those memories are in the front of my mind and I wish I had memories of you being a mom to me.  A few memories of you and dad when the kids were very young are floating around in my memory banks but mostly the memories are of you in your decline.  That hurts and sometimes makes me angry.  I guess all of my feelings this birthday are just another phase of grieving and grief has no time limits.

It’s your birthday today, Mom.  Happy birthday to you.

Love,

Your baby

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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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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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