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
"Alzheimer's: Through My Mothers Eyes" 