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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 !


Pet Therapy – honored to be a part of it….thank you RebelMouse !

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