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“Alzheimer’s Through My Mother’s Eyes” – on “Plaid Radio” !!

“Alzheimer’s Through My Mother’s Eyes” – on “Plaid Radio” !!

Thank you, shout out to Sarah Zink.

I am honored to have been featured on their “Plaid Radio” show…
talking about caregiving, family and being a caregiver for my Mother. Many tips, resources, organizations, “should” and “could” have done – for caregivers.

SUZ

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5* Book Review – “Hit the Nail on the Head”

5* Book Review – “Hit the Nail on the Head”

New 5* review that is eloquently written with beautifully relayed sentiment. Refreshing expression – of an often misunderstood responsibility.

“That said, I would recommend this book not only to caregivers but also to those who support or criticize the role of a caregiver in their family”. The reviewer goes on to say – many instances that only caregivers can relate to….”

“The book is instructive, and it hit on most of the highs and lows I experienced. It’s all too easy to give instruction to caregivers when you’re not one, and it’s even easier to dot every conversation with a caregiver with “helpful hints,” even if the speaker doesn’t have a clue what he or she is talking about…”

Thank you – MJ Plaster.

SUZ

Radio Talk – with Sarah Zink – “Plaid for Women”

http://www.blogtalkradio.com/sarahzink/2015/03/26/alzheimers-through-my-mothers-eyes-with-suzette-brown

Honored to be chosen to partake in “Plaid for Women’s” Radio Talk show.  My experiences as a caregiver – day to day life and the frustrations of being a caregiver.

Many subjects broached to help those who are in the same situation I was in.  Driving – get your loved one off the road—If you can do a better job – please take over.  Do not take the change in your loved one personally – it is the disease speaking.

Many more discussed from my experiences over the yeas.

Please share any comments, suggestions or ideas – they are always welcome.

Thank you Ms. Zink !

SUZ

Caregivers…spirit, mind and body.

Through the five years I took care of my mother, as her dedicated caregiver, this will be the first blog I write to share my exhaustion and frustration – since I also worked full-time with a family of my own.

I can honestly look back at those years now and wonder how on Earth did I ever do it?  How did I work full-time for a school system?  Raise a 14 year old son?  Take care of my home, chores, family and myself?  Have conversations and hugs with my husband and best friend?  Mom always took first fiddle.  Everything else was brushed aside.

The first honest clue I can offer – is I neglected myself.  I thought I was super woman and could handle anything.  It took a physical and mental toll on me – as I realized toward the end that I had to start telling my mother “NO” I could not visit her and again bring her money…I was just there yesterday and the weekend before….no, I’m not going to the bank and drawing out cash for you….I was just there.

My son had just entered high school.  He was very active in school sports and outside activities.  My husband who is and has always been a hard worker, worked 13-14 hour days until we finally moved back to the Peninsula from Gloucester, Virginia making it much more feasible for him.  He was exhausted with his long work hours – and then the long drive home, each and every night.

My dad passed in 1999 leaving me with no idea as to the desperate situation mom was in.  After he passed, the nightmare began.  Mom was apparently well into the confusion phase – unbeknownst to myself and her friends.  The phone calls started within two days of dad’s passing.  Those phone calls asked me if I knew where my father was?  Mom said he wasn’t home yet and she was concerned about him.  This was merely a sign of things to come.

Mom was not moved to ALF until a year after dad passed.  That was a joyous day in my life, and I can thank mom’s elder attorney, doctor and adult social services for this progression in her status.

After dad passed, the severity of her illness became apparent immediately.  The phone started ringing each morning before I even left to go to work.  My neck tensed up as I walked out the door.  I had to get a teenager up and ready for school as well as myself, two dogs, and straighten the house.  My stomach stayed in knots during the day – I knew what was awaiting me when I returned home.  I was not disappointed, there were over 15 phone messages, each one from Mom.  I tried to help her, I called her back and many times, I drove to her home or the ALF after work to console and help her.  When I returned home, she had already called the house again while I was on my way home.  An instant and unrelenting headache began.

I could not appease her, talk to her, or have a discussion.  She was no longer capable of retaining a single syllable I said to her, thus she would call back again.  There were nights that by 10:00 pm I was ready to throw the phone receiver out the kitchen window.  We got “caller ID”, we had no choice.  I let it ring. I let the messages pile up, I had to – my head was pounding and I had gotten nothing done, and none of us had family time that night and many nights after that.  Mom’s care was actually consuming me, my husband and my son.

There were many times before mom went into the ALF that she would simply show up at our back door.  My mother was a proper lady and never popped in on other’s – instant red flag when she drove to our home, especially at night.  I would offer her something to eat and drink and have my husband follow her home so she would not get lost in the dark.  That was another issue that had growing concerns, her driving.

I did not get enough sleep – and the phone calls from Mom would go until midnight and later.  We had no choice but to take the phone off the hook.  There were many nights I sat up alone doing her paperwork, bills, taxes, and filling in my journal for the elder attorney’s files.  My sleep was even more depleted with many late nights of paperwork.  Still, I knew I had to go to work the next day.  At 2:00 a.m. one particular night, I made up my mind to call in “sick” the next day, I just couldn’t function.  I needed a day of peace and quiet and more importantly, serenity.  Yes I felt guilty taking a “sick” day – but I earned them and needed one desperately.  What a wonderful day it was….I’ll never forget how much it refreshed me…just that one day.

I’m sure my blood pressure was elevated, I had no appetite, I was tired all the time, my neck and shoulders ached constantly from the stress, I was “snappy” with my family and friends, and I was very resentful of my dad.  How could he do this to me? How could he not let me know mom’s condition?

Once I got over my self indulgent pity party – I sucked it up and continued to be the voice for my mother.  I protected her, kept her safe, maintained her dignity and independence, and enveloped myself into her care.

When we moved to Hampton in 2000 – I had not only our household to move, I had to pack up and sell mom’s house as well at the same time.  This was a tremendous burden for myself and my husband   But, mom, was finally in an ALF.  She was safe and well taken care of.    The previous year’s strains on me physically were starting to show. My stomach was upset, my head ached all the time, and I had no time for myself.

I deeply missed the Gloucester School employees I had to leave.  They were “rocks” to me on days I didn’t think I could go any further.  One late night on my last driver over the Coleman Bridge the cold and dark water below, beckoned me.  If only for a second, I contemplated driving over the concrete barriers and into the cold water…..I had reached my limit.  Instinct and common sense took over – my husband and son needed me – so I continued my straight drive down the bridge into Gloucester.

I did tell mom’s doctor that mom was not going to live with us.  He had proclaimed that mom was a “danger to herself” and should no longer be living alone.  My answer was a swift and firm – NO mom cannot live with us.  I would have suffered a nervous breakdown – I could not handle her in our home.  I knew that if we had taken her in, that as soon as I left for work (husband and son already gone) – that there was a good possibility that she would walk out the front door and get lost in Hampton.  She could accidentally set our house on fire, let my dogs out, lock herself out of our home, get attacked by a stranger as she walked around searching in vain for her husband, or worse yet – find herself on a busy road – with dire consequences.

I would never have been able to live with the guilt if something had happened to her.  I had to work, I did not have the financial freedom nor option to quit my job and be mom’s 24 hour caregiver.

I salute each and every caregiver.  I send them all love, encouragement and support.  I have been there…and know the strains on my body, mind and spirit.  It made me a stronger woman and more determined than ever to be the best caregiver and DPOA that my mother could have.  Working full-time with your own family to care for – causes a strain to not just the caregiver, but the entire family unit.  Thank goodness I had a strong husband who was my staunch supporter and friend during this process, without him it would not have been possible.

My body buckled under the strain.  My mind caused physical illness as it fought for sleep, relaxation and freedom from frustration.  My spirit crumbled on more than one occasion and caused guilt on my part for not being the perfect caregiver for my mother.  I shed tears out of everyone’s sight as I snuggled on our bed in the fetal position…hoping for some sort of break – a break that would never come.  It was an intense five years, but also 5 years of loving and appreciating the woman who gave birth to me.  It was no longer mom speaking, it was the disease, nemesis of Alzheimer’s.

I miss you Mom….

SUZ

Support and encourage Caregivers…..or become one.

CAREGIVING  is not a one person job – but it can be for those of us who virtually have no support.

When my mother needed to be assigned a Durable Power of Attorney for all her future needs, the duty fell on me as the daughter who lived locally.  Don’t get me wrong, I was proud and honored to “speak” for my Mother, but little did I know what I was in for.  As a mother of a teenage son, a fulltime employee for a school system and a husband who also worked fulltime and long hours – my time allotted for family was treasured on the weekends and whenever the three of us could get away for a break.

Taking over as my Mother’s DPOA, smashed any weekend plans we made, peaceful evenings, and time spent together.  The job was fulltime in itself – just in Mom’s demands alone.  Her incessant – constant phone calls nightly drove me to the point of almost slamming the phone against the wall hoping to leave a big hole and wall stuffing on the floor.  We had to get caller ID, we had no choice.  By the 16th phone call of the night, I stopped answering.  For my sanity, I had to.

Now of course I know that this IS what it really takes to be a an effective, honest and reliable DPOA.  Supporting my mother, caring for her, and standing up for her independence and dignity.

What a fool I was – being naïve enough to care what other’s thought.   How their words sliced through me like a sharp implement.  Insinuations that I was out to get Mom’s money and belongings.  The question WHY? do you take away her independence?  You already moved her out of her home !  You sold her house and put all her belongings in storage.  All her money is gone and why are you on the account with her?  Why can’t the “clan” all get along?  How do you know it is Alzheimer’s?  Mom sounds “fine” to me when I talk to her—my personal favorite.

She can still drive some argued – all you have to do is MAKE/DRAW a big black RIGHT arrow on a piece of paper and tape this sheet of paper to her steering wheel – that way, as she looks at the drawing of an arrow pointing to the right,  she can ONLY turn right on the one-way street when leaving the Assisted Living facility and she won’t turn LEFT into oncoming traffic.  How dare you take away her driving privileges…. that’s the last shred of independence she has.  What are you going to do with her car? Are you going to keep the money for the sale of her car?

Even after informing this genius that I would be held legally/morally responsible for ALL consequences-monetary and otherwise should Mom get into an accident, and God forbid injure, maim or kill someone….I could also lose my home if Mom accidentally killed an innocent person, it would be my cross to bear. If Mom had killed an innocent person while she was driving with the diagnoses of Alzheimer’s, the burden would be directed to me as her DPOA – having full knowledge of her diagnosis and still allowing her to drive.

I should not have allowed her to continue to drive. Mom was now medically diagnosed with “Alzheimer’s Disease”, documented in her medical history.  I have the car insurance guy begging me to get her off the road – a very concerned ALF administer – Mom’s PCP – Mom’s elder attorney and Adult Protective Services officer asking me why is your Mother still driving?  Why does she still have a car here at the ALF?  She has no need for one.

This genius that I mentioned – indicated on several occasions that they would love to have Mom at their home for a weekend or so – to give her a break.  I was very excited for Mom, to be able to share her confusion and actual decline with someone who insisted there was nothing wrong with her, or maintaining that Mom’s Alzheimer’s decline was not as serious as I was stating…..  It never panned out of course – but they insisted their intentions were good.  There was always a lame excuse.   Mom would have enjoyed getting out of her ALF room and spending valuable time with these family members.  In order to understand the severity of Mom’s decline, since our conversations were no longer effective and merely sufficed to make me feel like a complete failure  – a few days with Mom in their home – surely would have enlightened.

I had one family member goes as far as to outright inform me that maybe there wasn’t anything wrong with Mom – maybe it was me ….who had the problem.  Today, 10 years later, I would have no hesitation telling this family member to kiss where the sun doesn’t shine, followed by don’t contact me anymore.

The negative comments, insults and  suspicions all directed at me, did nothing to help my ailing Mother.  They only served to piss me off further and push me closer to wondering about my sanity.  Support?  I don’t think they knew the meaning of the word.  Finally after I simply couldn’t tolerate innuendoes any longer – I offered (2) separate family members complete control and take over of the DPOA.  This would relieve me in more ways than one – of Mom’s physical, mental, emotional and financial duties.  The (2) family geniuses surely could do a more apt job than they apparently thought I was doing.

I could be free of caregiving duties.  Spend more time with my own family, give my body and spirit at rest at last.  We could return to our calm lifestyle and enjoying long family weekends….with no phone calls from Mom.  No Mom showing up at the back door any time of day or night.  No more complaining relatives and friends. The exhausting trips to the ALF, shopping for Mom, and doing all her financial bills, paperwork, documentation late into the night would dispense. Being relieved of this huge responsibility by a complaining and annoying relative would have indeed been sweet.  I couldn’t wait.

I contacted each of them, who were both out of state (Virginia) I might add, and asked them to give me a convenient time in order for me to make an appointment with Mom’s elder attorney.  I would pay for the elder attorney visit – and ALL DPOA duties and responsibilities will be legally switched over to them.   The elder attorney would fill them in on the requirements, record keeping, filing, and all else the “job” of DPOA consisted of.  What a great idea this is I told them.  Hopefully, even though I knew I did a great job – maybe they could do even better taking care of Mom on a fulltime not to mention daily, basis.  Of course, this will eliminate any more bitching and moaning on their part.

Excitement weaned as it grew obvious each had no inclination or desire to take over as DPOA.   It never happened of course.  I was Mom’s caregiver, guide, friend, daughter and DPOA until the day of her death.

Word to the family, friends, acquaintances, co-workers of a loved one diagnosed with Alzheimer’s disease – please – if you can’t support a caregiver who is already stressed to the point of barely being able to sustain their lives as it is – and then being overwrought with caregiver duties and responsibilities that weigh down the human heart and soul – then either leave them alone completely or keep your nasty, negative, destructive comments to yourself – and HELP them.

Caregivers need support, encouragement, guidance, solace and love.  A big hug and kind words every day goes a long way !

SUZ

Caregiving….slam that phone receiver against the wall….

     As I start on Book # 2 it allows me a second chance to heal and understand the depths of human endurance I achieved.

     I now know, that it was OK to feel like bashing the phone receiver into the wall after Mom’s 17th call of the night.  Now I REALLY understand the toll it takes physically on one’s body and spirit.  I did keep my sense of humor which I inherited from my Dad.  Many a day my humor – sick and twisted at times –  relieved the pounding in my chest and head.

     For a little over 5 years, my main concern was my Mother, her welfare and safety.  This included her mood swings, her rage, her frustration with not being able to remain independent.  Her confusion, knowing something was askew, but unable to mask or do anything about it.  She was scared and innocent.  She was frantic and panicked many a day as I drove to her home to comfort her.

     I can relate to all caregivers feelings, emotions, questions and pure adrenaline as the heart pumps faster from the stress bestowed by the brain.  The physical aspect alone, was unbearable.  My head pounded on many a day.  I knew my blood pressure was up – but was too scared to have it checked.  My neck and shoulders bore the strain of what seemed to be, the World.  All the while working full-time with my own family which included a 14 year old son. 

     That phone.  That Damn phone and its beckoning ring.  By the time I got home from work, I had a full-time evening “job” answering Mom’s phone calls.  The machine was full of messages as I walked in the back door of our home.  What do I do about my insurance?  When is my doctors appointment?  What day is it again that I come to your house for dinner?  I felt like walking to my bedroom, closing the door and hiding under the bed covers for the remainder of the night.

     Instead, I just stood in the middle of the kitchen as the tears fell.  What am I going to do? 

     This was not just today.  This was every night of the week.  Seven days seven nights.  Mom just walked around in her living room with hundreds of little pieces of paper in hopes of scavenging a semblance of organization.  I knew she didn’t remember the other 12 phone calls she made to me – but by 9:00 p.m. every night, I really didn’t care.

     I got nothing done in my own home.  My evenings were basically spent answering Mom’s never ending phone calls.  By 10:00 p.m. I told Mom to not call back, I was exhausted and going to bed.  Within 5 minutes, she was calling again, asking what I had just told her.  I then, didn’t answer the phone – my energy was depleted.  I could not function anymore, the only thing I wanted was sleep.  Sleep. Sleep.

     Then, Mom, at 10:00 p.m. — and the last time I answered the phone for the night…was indignant in expressing to me — that I needed to help her.  She was rude about it also.  Now I look back and it’s much easier to disseminate that it was the vicious disease, Alzheimer’s speaking….not my Mother.

     Did that make it any easier?  Any less stressful?   No.

Suzette

    

    

    

GET OFF the (blank blank) road…..

I dreaded the day would eventually come when I would have to get my Mother OFF the road….take her driver’s license, sell her car, cancel her car insurance and take away the last form of independence she had.

In my book, I describe in detail the events that finally led to Mom being literally forced off the road.  Mom started getting lost coming to our home in Gloucester, then came the inevitable car accidents (that she never remembered).  We lived in the same house for 15 years and in the last year, she couldn’t find it.  Many a night I couldn’t sleep wondering if she was “running the roads” and possibly still years later, looking for my Dad and her husband driving around alone late at night.  It was agony.

The day that the CU called me urgently at work, it finally hit home.  Mom was literally standing in the middle of the CU parking lot.  She was looking from side to side for her vehicle.  The CU manager called me at work and she was describing the horrific and sad scene while I was ON the phone with her.  She told me “your Mom is in our parking lot, she looks lost, she can’t find her car”.  OM GOSH…..Thankfully one of the employees went out and helped her find her car.

**I had the choice of hiring a personal chauffeur for Mom, but I knew that would not go over well.  By the time she argued and demanded her keys back – they would quit.  Her car would be in her driveway and she would be unable to drive it, because the driver would have Mom’s keys.  The car, MOM’S car, would stay at her home, but she would be unable to drive it.  I scrapped that idea when visions of Mom getting extremely upset at the person I (if it had gone through) hired. 

**Next, I thought about taking her car away while she was still in her home and had not yet begun living at the ALF.  How, just how would she get around?  I could also picture her walking down her neighborhood street until she eventually came to a busy highway about 1/2 mile away – or walking and getting absconded by some evil person.  I couldn’t bear to think about something happening to her, so that idea was scrapped also.

**The third consideration, was one that merely ended up being a “fleeting” thought.  I could drive her around, she would actually enjoy it – and I would be at peace with myself.  BUT I worked a good 40 miles away at the north end of our county.  I worked for a school system and it would have been physically impossible for me to drive Mom on errands throughout the day.  The only way the situation would work, would be for me to quit my job and be Mom’s personal chauffeur.  That was a great idea – however, I needed to work for the additional income that helped pay our mortgage every month.  NO way could I quit my job to drive Mom around all day long.  I wish I could have, but it was not possible nor feasible.

Good grief.  Once Mom was placed into the assisted living facility, her car went with her.  The Director of the ALF was mortified that Mom was still driving.  A relative suggested I take a piece of paper, draw a big right arrow on it, and place it on the steering wheel.  That way, when Mom left the ALF, she would see the arrow (only hopefully) and turn RIGHT as it was a one way street out of the facility.  I look back now and cannot believe I agreed to such an idiotic suggestion.

Now that Mom was diagnosed with  ALZHEIMER’s by medical professionals, I was informed by her car insurance agent (who was beyond panicked at the idea of Mom still driving) – that IF Mom got into an accident and injured or killed someone —- I WOULD BE HELD fully accountable.  Since I now had DOCUMENTED proof of her Alzheimer’s and I CONTINUED to ALLOW her to drive – the responsibility for her actions would fall on me.

I can tell you – that is all I needed to know.  It didn’t matter to anyone else – they wouldn’t be held responsible, so of course they were beyond pissed that I had Mom stripped of all driving privileges.  Driving in our country, is a PRIVILEGE, not a RIGHT anyhow.

I literally had to call Mom’s elder attorney – place Mom on the phone to speak with her – for Mom’s elder attorney to tell Mom that she “couldn’t drive anymore”.  Mom was furious.  She didn’t understand consequences any more all she understood was she would not be driving her car, and I could relate to how she felt.  How everyone else felt anymore, I didn’t care.  If Mom had killed or maimed someone for life, and it would fall back on ME – not only could my husband and I lose everything we had – I could never deal with such a tragedy, knowing I should have gotten MOM OFF THE ROAD sooner than I did.

Shame on me.  No excuses.  Mom was now finally OFF the road.  We took her car to our home and fixed it up and sold it.  I handed over the cash to Mom, it was HER property and HER money.

Don’t forget readers and caregivers – the money from the sale of Mom’s car and the car itself, belong to your loved one.  This does not mean a free car for the family.  The car must be sold and directions followed as per your loved ones elder attorney directions. –Suzette