Posts Tagged emotions

Fear

I know I’ve gone way off track with what my original intentions were with this blog but I hope you indulge my zigzagging 🙂  Sometimes when I think back on that awful trail that went from mom being mom to her being just this animated shell, I find myself thinking what could I have done better (which is nothing more than a lesson in frustration and futility) but lately I have thought about what she (and probably many others with dementia) may have felt like during this.

Mom was fiercly independent, could drive her Fords with the best of them (Dad used to call her lead foot), always made and kept that hair appointment like clock work, and at one time was quite the fashion plate.  Of course later after 6 kids she turned into a mom and wore jeans and sweats but they were always neat.  But when the Alzheimer’s started to take her away all of that changed.  She voluntarily stopped driving or maybe dad did some subtle suggestions.  At least we didn’t have to fight with her about handing over the keys like so many other families have to.  I don’t envy you who have/had to!

She kept the hair appointments for awhile and then that fell off with her resorting to wearing all sorts of hats.  Then she stopped bathing and would often take the dirty clothes out of the washing machine and put them back in the closets before dad had a chance to wash them.  And of course there was the phone routine as I’ve mentioned before where she would call me to look up a phone number for her using the excuse of she couldn’t find her phone book, read the print in the phone book, or just yell at me to do it because she was my mother and she was asking me to do it!  She used the guilt card as long as she could.

Sometimes she would look embarrassed when she would forget something and other times she would get angry…at one of us.  But in hindsight, she felt both.  She knew, for awhile anyway, that something was wrong and she couldn’t do or remember things like she used to.  Fear, anger, and embarrassment were probably all mixed in there and she had no idea how to handle it.  Adding insult to injury, we didn’t have a clue about what the hell was going on either so we had the same emotions going on except we weren’t the ones with dementia.  We could still drive and cook and do laundry properly.  All those skills were leaving her bit by bit and all she could do was thrash about in frustration.

I will confess to not being the kindest most sympathetic person in her world when she was going through the early stages of this.  I was dealing with raising young children in a crumbling marriage and having two sick parents (dad had diabetes) added to that mix made me a frustrated and angry person which sometimes came barreling out at mom and the rest of the world.  I had my fears too!  I was afraid that I would be stuck with taking care of them (which turned out to be about 80% true) I was afraid taking care of them would take a big amount of my time (it did) and I was afraid that I was losing my parents.  No matter what we may say or think or how old we may be, we will miss our parents when they are gone.  In this case my “mother” left me long before her body decided to leave.  I had a mom but she wasn’t mom.

Caregiving ain’t for wimps let me tell you but conversely, being the one cared for ain’t a walk in the park either.  Imagine having someone you gave birth to now doing for you what you once did for them – bathing, dressing, feeding, etc.  Imagine that you can’t do for yourself things that you have done for decades – dialing a phone, driving, playing a piano, baking the cake your other half has always loved.  And imagine leaving the home you once knew to live in a strange place with strange people who hopefully are going to take good care of you.  Heck!  I freak out when I can’t find my phone or keys or recall a name let alone having to deal with what those with Alzheimer’s and dementia must go through.  It is scary!  I wish I had known this when mom was alive and had shown her some kindness instead of my frustration.  Once I began to come to terms with mom and this damned disease I became kinder to her and in turn I wasn’t as angry or fearful.

Recently the hubby and I were leaving the grocery store to head to it’s gas station when I noticed an older gentleman wandering the parking lot searching for his car.  My dementia antennae went up!  As we pulled into the gas station I jumped out of the car to watch him wander back and forth among the rows of cars.  Finally I told the hubby I’d be back and I walked over to the man and with a warm smile I asked him if he needed help with his car.  He was embarrassed but I knew what to do.  I asked him what color was it and what make.  I made jokes about not knowing a Chevy from a Toyota unless I could see the name on the car.

I talked gently to him as we walked back and forth looking for his white Chevy.  Couldn’t find it so I asked him did he remember if he parked it close to the store or further back; eventually I asked him if his car had an alarm on it.  He wasn’t sure and said he just had new tags put on the car and that’s why he was confused (I knew that as a sign of embarrassment) as he handed me the keys.  Fortunately his keys had a button on them that when pressed would sound the horn.  I pressed, it honked, we found the car! He thanked me and apologized for not recalling where he parked.  I smiled and told him it was alright and we all forget where we park in these big lots sometimes.  But before I went back to hubby waiting at the gas station I showed him what button to push to sound his car’s horn if he needs to find it again.

He drove off slowly and I prayed he got home safely without hurting himself or anyone else.  Was he in the early stages of dementia or just an old guy with a momentary lapse in recalling where he parked?  Either way it happens and is happening across the globe…but I’m so happy I stopped to help him; to ease his fears that day.

 

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You will be missed – But you are now free

This week a sweet cousin of mine passed away from complications due to Alzheimers.  And while we were not a pair of almost like siblings close cousins, I did know her.  Our family is the type that if you are family then you get a big hug anyway when first meeting and ultimately get invited to dinner.  I knew her when she was a sharp as a tack woman who dressed well and could get to anywhere she wanted like guiding me from my hotel to our Aunts house that first time I was in her town visiting.

When I got the news some 7 or so years ago that she was on Aricept because she was at the beginning stages of Alzheimers my heart just sank.  No! I exclaimed…not another family member.  At the time my mother was in the end stages of the disease.  The once vibrant woman was now less so and had to have one of her nieces live with her to help take care of her.  At that time she could still have a conversation with you – to an extent – but only for a short time.  Then she would either not really converse or do the usual for this disease repeat herself.

Eventually she had to enter a nursing home because her condition had declined to a level her niece could no longer care for her at home.  She held in there for some years until she eventually stopped talking, walking and ended up on a feeding tube in hospice.  This week she decided it was time to go home and while she will be missed – especially by her twin – we are all thankful that she is now free from this damn disease.

When someone dies from Alzheimers or dementia it is a mixed bag of feels.  Your heart aches because this person you knew and loved, no matter what their condition was at the time, is gone.  No matter how many days a week you took care of them or went to see them at a nursing home, when they are gone your emotions go every which way.  In my case I was happy I never had to set foot in that nursing home again! I was happy I didn’t have to see mom suffering!  I was happy I wasn’t tied to being responsible for her and all of the paperwork, etc. that was involved with taking care of someone sick who was never going to get well!  I was happy that mom was free from existing (it was NOT living) like that!

But I also had this strange ache that said no matter what condition she was in she was still my mother and while she was gone years and years ago from the disease, this “shell” that was still there that resembled her and liked chocolate who I called mom, was gone.  I have a feeling my cousins twin, other sister, and the rest of the family is feeling various degrees of this too.

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Would you read it? Would you go watch it?

There have been a few (many?) movies and books where the main topic was about someone with Alzheimer’s or there was a prominent character in the story with dementia.  Let’s not forget about the books written by someone with Alzheimer’s too.  But as shown by the topic of this post….would you?  Would you, could you read that book or go to the movies to see that movie?  Let me clarify something for a moment, I am not referring to any books that are meant as a help or guide for someone who either has dementia or is a caregiver.  Those books I have read!

No, this is about fiction and non-fiction dealing with Alzheimer’s.  A few books are: Dancing on Quicksand A Gift of Friendship in the Age of Alzheimers by Marilyn Mitchell, Still Alice by Lisa Genova (now a much touted movie), The Notebook by Nicolas Sparks (also a movie), and Elegy for Iris by John Bayley.  I am sure there are many more but these are just a few.  A few movies are: As previously mentioned Still Alice and The Notebook, Iris: A Memoir of Iris Murdoch, Away from Her, and Still Mine.

Have I seen any of these movies or read any of these books? No.  Why? Because I cannot bring myself to read about or go see a movie about something that I watched for 14 years take my mother away from me.  I could probably write my own damn screenplay but then again, couldn’t all of us who are/were caregivers or are dealing with the disease itself?  I went to see the remake of Planet of the Apes where the actor John Lithgow, while not a major character in the movie, was a bit of the spark for what led the apes to become what they became.  He was portraying a person who had Alzheimer’s.  And you know what happened?  I freaking cried in the movie!

Did not see it coming; was totally blindsided by this emotional outburst.  To this day I have no idea why I started crying but my best guess would be that seeing his decent into the disease and his eventual death reminded me of my time and of a hurt that while I thought I was somewhat past it all, I apparently was not.  And that is why as much as the books and movies may be great and Lord I hope they can do something positive to increase awareness (and funding) for a cure/help for the disease, I cannot deal with them.  They remind me too much of what I lived through and frankly, I do not like crying into my popcorn!

I was recently blindsided (again – geeze!) by a post I read.  It was on the blog of, Frangipani, a woman in Singapore whose mother has dementia.  She  had a link on her post to the blog of a woman who is dealing with early onset Alzheimer’s.  Gill – of Before I Forget – lives in England and wrote a post about how the person with Alzheimer’s feels about the trauma we caregivers feel about taking care of them.  For one, it was wonderful to read about Alzheimer’s from the other side of the fence (my mom wasn’t able to fully communicate her feelings but there were days I could sense it) and it was an eye opener.  And it was also another Ninja attack right between the eyes for me.  Didn’t see it coming and sure as hell did not see the floodgates of emotions it unleashed.

Her post took me right back there to being a caregiver and the things I said to and around my mother somethings that at first were really really horrible and then slowly changed as she became worse and I learned better – not totally – to accept things as they were and were going to be.  I ran upstairs to where my husband was cooking dinner (yay for him cooking!) and just sobbed I needed a hug.  Him being analytical is asking what? What happened? I couldn’t explain I just needed a hug and finally he caught the clue and held me as I sobbed about some guilty feelings that I thought were long gone…apparently not!

So that is why I cannot read these books or go see the movies.  Maybe one day, maybe not but unequivocally not happening now!  It’s interesting though that I can read blog posts much more readily.  Perhaps it’s because I feel they are more “real” and that I can comment and even start a conversation with them if we both choose.  Sometimes I feel that maybe I am in some way helping by leaving a comment or a word of encouragement.  So returning to the title of this post – would you, could you read these books or go see these movies?  Or have you already?  Tell me why you have or haven’t.

 

 

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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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How does the caregiver feel about all of this?

When you are a caregiver to someone that’s ill, someone you love…how do you feel about it?  The emotions can run the gamut from feeling oppressed and depressed to feelings of martyrdom.  I’ve seen them all and have at one time or another felt them all.  Why? Because they were my feelings and my feelings were legitimate!

I was confused when mom first started showing behavioral changes.  I felt hopeless because not only did I not know what was going on but I didn’t know who to turn to.  I had others, including family members, brush her mental changes as being part and parcel of being old and that I was just a worry wart.  I knew something was wrong I just didn’t know what or what to do about it.

So like many of us who are afraid and confused only the outer symptoms were addressed (keeping clean, food intake, not letting her drive) but what was going on underneath – the heart of the matter, the meat and bones – was left to fester until it was too late.  Fear, ignorance, and denial are a deadly trio for anything in life.  Please don’t let that gruesome trio take you over in whatever you have to face in life.

Then panic set in as I realized she wasn’t getting any better and her behavior was getting worse.  “What are we going to do about mom?” I’d ask my sibling and dad.  And everyone had their own opinion but what I now know should’ve/could’ve been done wasn’t because of the evil trio.  So then it devolved into frustration and anger.  Those two emotions were because I felt I wasn’t getting any or enough help from my siblings or dad for that matter sometimes.

Frustration led to fatigue as I tried to do as much as I could with what I had along with living my own life, raising children, and working.  There were so many candle ends burned it was absurd.  Then when anger saw that my guard was down it slithered in and I began to get angry at the world and God for what was going on in my life; in my parents lives.  I was tired, angry, and many times in tears.

I forgot to mention embarrassed.  I didn’t know about dementia support groups at the time and when mom was still able to go out with us I was ashamed of her behavior and her outward appearance.  I would either walk ahead of or behind mom and dad when we all went out together because while I wanted to keep an eye on them I didn’t want anyone to connect any dots.

When my parents had to be placed in separate nursing homes I felt like I had failed some how to do better for them.  I felt angry that they let themselves get this bad health wise and at times I wanted mom to just die.  And do NOT get me started on dealing with legalities for them.  I was worn out because I was trying to be all things to and for them. I was desperate because I knew I was slowly losing my parents and I wasn’t even close to being ready to be an adult orphan.  In the midst of all of the turmoil I still loved my parents as I am sure you love the one you are caring for.

And I felt all alone because I was learning about how to take care of their needs physically and legally with on the job training.  I learned things the hard way at first because I didn’t know where to turn.  Eventually I found about the Alzheimer’s Association and found an online support group which saved my sanity and as time went on I learned what battles to fight and how hard to fight them.

So why am I telling you this? It’s because you too may be feeling any number of these feelings right now as a caregiver and I want to say that it is alright to have those feelings.  You are human too and the task you are undertaking is an enormous one.  You are doing things because you have to, you want to (and sometimes you really don’t want to have to), you need to and sometimes only you understand what you are feeling and going through.

No matter where you are in your job as a caregiver be it all alone or with an entourage of help and support, your feelings are yours and they are very legit.  There is no need to apologize for them nor to feel guilt or shame.  Keep doing the best you can…

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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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