David Moore

Well…Isn’t This Most Uncomfortable

This might be uncomfortable for some of you to read…it certainly was uncomfortable for me to experience.

As the son of a mother with Alzheimer Disease (and her primary caregiver) you eventually end up doing things for which you could never have dreamed. I’m not a doctor / nurse or trained caregiver – I’m just a guy who wanted to see his mom (after a very difficult life) battle this disease in the comforts of home.

The first time I had to put my mom in the shower was obviously awkward for me but I closed my eyes and got through it. Okay…I’ll get straight to it. Here’s the viewers discretion warning – so if you’re easily grossed out then change the channel / turn off the television or whatever.

INCONTINENCE – This really was the dirty work. The initial experience for me (before she started wearing depends) was one of shock. I recall saying “God – take me now” somewhere during hour 15 or 16. Seriously I spent 15 or 16 hours straight following my mom around the house with a mop and bucket. It’s not like I had a 25 foot roll of plastic handy where I could cover every chair / couch or bed in the house. The nightmare doesn’t end with depends either. There were nights that I never went to bed because I was washing clothes, cleaning carpets and the record…changing her bedding 9 times in one night. On more than one occasion I’m working at cleaning my mom’s posterior with my right hand (yes…with a wash cloth) and attempting to hold her with my left hand. This little 95 pound polish women was strong as can be as put up a fight every step along the way. I’m trying to clean her and she’s hitting me, pulling my hair and gee…guess what was all over her hands when she was pulling my hair and slapping me? YEP. Now 10 minutes after we’re done, she’s all clean and settled back down in bed or in a chair she would look at me and softly, tearfully say “I’m sorry”.

See – there is no easy way to get through events like these described above. You learn things as you go but sometimes you’re just not prepared. The best thing you can do for an A.D. patient is just to try your best. Sometimes you get angry and frustrated…sometimes I would escape for 3 minutes into our detached garage (close all the windows and doors) and yell obscenities at the top of my lungs. Then upon re-entering the house I would tell her I loved her.

The Final Curtain

by: David Moore

Not quite the last laugh…but

Despite finally losing her 13 year struggle with Alzheimer Disease…my mother found a way to make a grandiose exit. Pretty remarkable for someone who (like most A.D. victims) was nearing that final six week to six month stretch when they have trouble swallowing, spend each day in a fetal position and are usually under hospice care, whether that be in their home or as is most common…in a memory care unit. No one can convince me that the event I’m about to share was merely coincidence. Whether the plan was somehow crafted by my mother as a final show stopper or willed by God, the mere timing of it all eliminates coincidence.

We believe she enjoyed her last weekend before becoming unresponsive. She giggled, hugged and spent time being the imp that marked her new persona. By all reason she should have been oblivious to something pending that could derail our plan for her to die at home. Staying at home until the end was important to her…she endured 11 years of visiting her mother (almost daily) in a state run nursing facility. We don’t come from money and sometimes that means placing a loved one in an environment that you wouldn’t wish on your worst enemy and it scars all involved.

My sister took my mom to her house that final weekend, she lived 45 minutes away and this wasn’t something that she did very often. Turns out my sister had an ulterior motive. For the past month or so she had been complaining about the amount of money that the hospice provider was billing Medicare. Although she spent a limited amount of time as a caregiver for my mom, she apparently knew best and threatened to end this nonsense. Forget the comfort I and the other caregivers felt (having someone else manage the medications, having nurses visit weekly, musicians playing and singing for my mom twice per month, a hospital bed and other helpful items that come with hospice care.) So unbeknownst to me my sister had set a doctor’s appointment for my mom early Monday morning with the goal of convincing her physician that she should be taken off hospice, she was fine and this was needless money the government was having to pay. Well…the best laid plans of mice and men often go awry.

At 8:00 Monday morning (as they drove to the doctor’s office 30 minutes away) my mom became unresponsive (a work of fiction couldn’t have it timed better)…five days later she passed away. My mom was forever the peacemaker. My sister and I did not get along, my brother (who died at age 42) and my sister did not get along, my brother and my dad did not get along…I’m sure you get the point. Dysfunction at its finest. My sister and I were about to embark on an epic battle. She would have done everything in her power (if she had gotten the doctor to agree with her) to end my mom’s hospice care and that would have been over my dead body, because after 13 years of being my mom’s primary caregiver, I needed every bit of help I could get.

After embarrassing herself at my mom’s doctor’s office the next stop was my house. We carried my mom in the living room and put her in the hospital bed. Hospice told us that this was it…she would not regain consciousness. Hospice provided morphine and Ativan that I  administered every 2 hours for 5 days and nights. They also visited daily and offered comfort…letting us know that my mom wasn’t in pain and we were doing all we could in her last hours. It’s pointless to focus on my sister’s actions and somehow I found restraint and didn’t berate her…which I would have thoroughly enjoyed.

Alzheimer Disease is a vial, destructive disease that kills the brain of its victim and also tries to kill the brain of the victim’s caregiver. My apologies for not giving credit to the author of that statement but it describes Alzheimer Disease explicitly. Family dynamics and economic status play a major role in anyone’s ability to care for a parent or spouse in their own home…but for one whom is stricken with this incurable illness no better gift can be given. Now – when I look back at granting her stay at home wish it’s a nice, warm and prideful feeling. I think how happy my mom must be with the way she was cared for and loved through the darkest of days.

A Caregiver for all Seasons…Doubtful: How do I know if I have the right caregiver?

caregivers

Hiring the right caregiver is a challenging process. Whether you hire a home care company to provide your loved one with a caregiver or you hire the caregiver yourself….it’s doubtful that you will find that one perfect match.  Perhaps you do find that perfect caregiver but they will not work for the rate you can afford to pay. You may have to settle for someone with less experience but the potential to learn and grow within the caregiver role.

Before you begin interviews or prepare to tell the home care company what you’re looking for…begin by assessing your loved ones current state of health, prognosis, personality and outline your primary reasons for seeking outside help. Are you just looking to provide companionship to your loved one, will the caregiver need to administer medications, take blood pressure readings, bathe your loved one?

Has your loved one been diagnosed with Alzheimer’s Disease, perhaps have physical limitations or other impairments that is preventing them from living their life as they did in the past? Does the diagnosis physical limitations or impairments hold the potential for improvement? Or will their condition be a steady decline?

Most likely you will change caregivers multiple times through the duration. An elderly person who has just been diagnosed with Alzheimer’s Disease for instance may only need someone to come for a few hours per day to fix lunch, do light household chores and run errands that your loved one is no longer capable of doing safely. At this stage personality and experience aren’t necessarily key factors in hiring the right caregiver, but as the disease progresses you may find that a good personality match is vital. Alzheimer’s patients can be aggressive, restless, strong-willed and the right demeanor is necessary to handle these issues on a regular basis.

Towards the end of the disease other qualities will be important…physical strength being one of them. Alzheimer’s patients eventually become unstable when walking, need help getting in and out of bed and can be strong as an ox when wishing to wander.  

You can save yourself some stress, frustration and anxiety if you realize from the beginning that managing caregivers, scheduling caregivers and defining caregivers job descriptions are activities that will continually engage you, occupy your time and cause sleepless nights. Their roles will evolve, increase, decrease and become more significant depending on the status of your loved ones health.