Tag Archives: dignity
I had the privilege of reading the online e-book by “Relink” titled, “Looking After Someone With Alzheimer’s At Home”…
First, allow me to offer admiration to any caregivers or family members who have taken a loved one with documented Alzheimer’s Disease into their home. It takes dedication, courage and love to open up one’s home for any loved one. I had to realize that my family was unable to take care of my Mother in our home – as we both worked full-time jobs, had a teenager in high school and were unable to afford home care for supervision of my Mother.
This e-book offers twenty (20) wonderful steps, including ideas, suggestions and pertinent information for family members to make their journey easier regarding care of their loved one with Alzheimer’s Diseases in their home. Many of these steps I can easily relate to – *driving, *communication, *safe environment, *denial, *(don’t) argue, *communication and *guilt.
Top tips and suggestions are – *take care of yourself as the caregiver, *find and attend a caregiver support group, and get over any *guilt associated with duties or loyalties as a caregiver. Just know that you are doing the best job your can do and if anyone feels they can do a better job as the caregiver – please offer them the full-time role of caregiver to your loved one.
I highly recommend this e-book to anyone considering welcoming a loved one into their home.
I have to give this e-book a 5 ***** rating !
Thank you to “Caring Across Generations” for asking me to write a blog/article on my experience being a Caregiver and a full-time employee with a family of my own. Employers need to understand the precarious position we, as Caregivers are in.
How did I ever do it? I look back now and have no answer, other than sheer will and support from my husband of 31 years and son. I am honored to share my blog…..
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? (We) Raise a 14 year old son? Take care of our 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.
When my Dad passed in April, 1999 I was employed full-time with the school system in Gloucester County. The job location was a good 20 miles from my home. My mother lived in adjoining York County to the south of Gloucester and her home was approximately 15 miles from my home. Many a day after work, my presence was needed by Mom. Needless to say, it was a great deal of back and forth driving after a long day at work.
The employees (my bosses) I worked with were wonderful, understanding and very supportive of me. I missed all of them tremendously when we moved to Hampton in June, 2000 a little over a year after the death of my Dad. My husband commuted back and forth from his job in Newport News/Hampton to Gloucester now, for over 14 years. It was time to move closer, so his long days would be shortened. For over a year – my caregiving duties were made much easier by understanding and sympathetic bosses. I will always be grateful to them for this time. I still have the plague that was given to me stating: “A Wild, Wacky, Wonderful Woman Works Here”. I miss them all dearly.
We were in the process of selling Mom’s home….in addition to selling our home in Gloucester and buying a home in Hampton. Mom’s house required minor repairs, work needed to be done in her yard, her roof, the floors, etc. That was a very rough month. But, I finally got Mom into an assisted living facility in Newport News and as her DPOA – repaired, painted, fixed up and sold her home. This money went into her account and was used for “self pay” to the assisted living facility.
We were also now settled in our new home in Hampton and Mom was settled in at the ALF. I hated leaving Gloucester School System, but due to the round trip drive of approximately 47 miles each day, I had no choice. I would miss my co-workers more than I ever dreamed of…. particularly when I found employment with the school system in Hampton.
Aiming my future was an important factor in finding employment once we re-located to Hampton. I had over 15 years with Gloucester Schools – and I really enjoying the field of education. I pursued the school system in Hampton and was elated to be hired by them in October, 2001! I was so very excited. My Virginia State Retirement would continue and the years ahead of me would allow me to retire and receive a VSR pension. (Virginia State Retirement). Most of my sick leave and vacation leave was gone, (some could be carried over from other school systems) – most of it had been used up for Mom’s care. Her doctors appointments, IEP meetings at the ALF, etc.
It became apparent fairly quickly that this particular job would not permit me to leave to simply “take care of my mother” as readily as the school system in Gloucester. Co-workers were nowhere near as understanding as my co-workers in Gloucester, nor were they supportive of my plight and situation as a caregiver. I was guidance secretary and it was a demanding position. Many disagreements ensued due to the fact that I was Mom’s caregiver. I received phone calls at work from physicians, the ALF, mom’s friends, my family, banks, credit unions and concerned individuals. Even though Mom was in an ALF, there were phone calls and requests for her care that simply had to be taken care of. Many instances could and would not wait until I got off at 4:00 p.m. causing me to insist on leaving. I could feel the resentment from certain personnel – and it escalated to the point where my phone calls were screened. I started being asked if I was on a “personal or work related call” and “who was I speaking to”. Then I was informed that my personal calls were not allowed at work, even after I explained that they were regarding my mother.
My desk was in an open area in the department. Three guidance offices were beside my desk, equipped with doors that could be closed allowing them privacy. I had no privacy. All my phone calls could be heard by anyone walking by headed to the main office, students or teachers sitting in guidance waiting for an appointment, a parent that stood by my desk until I acknowledged them (many were rude as they could see me on the phone) – it was a hopeless situation indeed.
I grew quite resentful of the constant questions and grilling regarding my personal business that involved the care of my mother. What CAREGIVERS need most is a working environment that bends to allow employees breathing room for caregivers taking care of a parent or loved one. I didn’t expect sympathy, extra pay, hours upon hours of free time off, being able to talk on the phone all day or a “free ride” at work…. I did hope for a small amount of understanding, allowing me time off when needed, with NO pay in order to take care of my Mother’s personal business.
Caregivers should NOT be singled out and micromanaged by management on a daily basis. They should not be ridiculed for their time on the phone, time off without pay, needing to leave right away due to an emergency, or appointments that require a caregivers presence. Caregivers should not have to go into detail regarding their loved one’s medical needs, it should suffice when a caregiver explains that they are the designated DPOA and caregiver of a loved one/family member – that may require time off work. If necessary, provide the employer a doctor’s note explaining in minute detail that the caregiver will and does need time off due to circumstances out of their control. I would have been more than happy to supply this documentation had I been asked.
It was stressful enough being Mom’s caregiver. The added frustration of being quizzed at work, merely added to the level of rage, anger, angst and stress. Some days, it was more than I could handle. I tried to make meetings after 4:00 p.m. as often as possible, including; doctor-dentist-elder attorney-meetings, etc. Many times these hours did not work for the other parties, so I had no choice but to take off work, with no pay.
I didn’t want to explain my Mom’s condition to any of my bosses at work. I honestly felt it was none of their business. Mom’s privacy and dignity were two things I vowed to keep sacred, for her. I explained to the bosses the bare minimum, simply letting them know that my Mother had been diagnosed with Alzheimer’s by medical professionals, that I was her DPOA and caregiver. I let them know that at least now she was in an ALF, safe and taken care of, but from time to time certain episodes occurred that called for me to leave and be by Mom’s side.
My needs were simple…to please allow me to simply take time off without pay when I needed to leave and be by my mother’s side. I didn’t expect any special favors. There were many issues that could not be dealt with after 4:00 p.m. as my employer continued to let me know that I was needed at my DESK. Homework was picked up after school and it was my responsibility to have it ready for parent’s to pick up, the phone continued to ring after school was out, teacher’s would come in and want schedules–copies of records-changes made in the computer on a student screen, there were papers to file in student folders – I could go on and on.
Caregivers need to be trusted – encouraged and supported. I do know this does not happen with many other employers as in my case. My stress level grew to the point that I thought I may have to be out of work for a couple of weeks due to my high blood pressure, pounding head, muscles so tight in my neck and shoulders I could hardly stand it–of course it would be without pay. Being micromanaged by my bosses accomplished nothing – and simply made me angrier and more uptight. I needed breathing room – I needed a kind word – a hug – none of which I received. My mother’s personal medical history was none of their business. What happened at the assisted living facility was also none of their business. They needed to trust me knowing I did not want to leave work again, without pay. I needed my paycheck and it was cut short many occasions due to taking care of Mom and her dilemmas, it had to be done.
I was my mother’s voice. I was her protector, her daughter, her safety net, and her DPOA. My job was to allow my mother as much independence as possible and maintain her dignity at all times. I had to work fulltime. We weren’t financially able to allow me to quit work to spend 24/7 as Mom’s caregiver. Give me a break at work, get off my butt, give me space. My responsibility as Mom’s caregiver was difficult enough, I did not need the additional pressure of micromanagement at work.
In 2003, I could no longer contain my distain of the “control” that was exerted on me. I took the Para-Pro test issued by the State of Virginia, passed it with flying colors, and became an Instructional Assistant in the classroom. I was no longer confined behind a desk all day long, with each and every phone call being micromanaged. I thoroughly enjoyed working with the teacher’s as their assistant in the classroom. Much less stress, and no longer sitting all day in an office chair. I could actually make a phone call concerning my Mom’s affairs in the teacher’s lounge, allowing me privacy, finally. The teacher’s all liked me, and we all worked well together. No more micromanagement. I loved it !
Employers, please – I implore you – have some understanding and human forgiveness for those caregivers that on occasion may need time off from work to care for an ailing loved one. If you have not been in this position yourself, the stress is unbelievable for the caregiver and leaves a permanent scar on their shattered spirit. Please don’t make it anymore difficult for the caregiver, who will not expect special favors from your company, for a meeting they have to attend, their loved one has been admitted to the hospital, a doctor’s appointment is coming up, or a crises arises that simply has to be dealt with.
My body and my spirit 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 when I got home, and 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.
I miss you Mom….
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….
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 !