Life and Grief

Deer In Headlines II

By Gery Deer

Most people don’t have to grieve the loss of a loved one until after that person has passed away. But family caregivers who look after someone with a degenerative disease like Alzheimer’s, ALS, or Parkinson’s, may face grief in a very different, and sometimes far more painful way.

A psychologist will tell you under normal conditions, people dealing with grief will progress through a number of stages: Denial, Anger, Bargaining, Depression, and finally Acceptance. We generally get hung up on one or more along the way until we can emotionally work through them, either on our own or with professional help.

I first learned the science behind grief in high school and college psychology classes, but not like I would understand it later in life. Up to that point, I had experienced grief like most people – by dealing with the death of a family member, the loss of a job, or whatever life tossed my way. But later, while caring for my mother as she declined from the ravages of Alzheimer’s disease, I was struck with how differently grief manifests itself for someone whose loved one is slowly being ripped away.

In my experience what makes grief different for a caregiver is how the grieving process seems to reset as a disease like Parkinson’s progresses through various stages. As your loved one suffers physical and cognitive decline, your understanding of their status has to be adjusted accordingly.

For example, early on, my father could no longer bathe himself and, not long after, even taking a drink from a cup was a major challenge. You say to yourself, “OK, this is how it’s going to be now,” once you’ve accepted some level of decline. You grieve the loss of the previous status, knowing things are getting worse.

Gary Deer Sr. attends a Parkinson’s boxing class with Gery at Drake’s Gym in Dayton, OH in 2019.

Five minutes later, you notice something else that’s gone downhill or altered in some way. There is no set rate for when to expect these changes in your loved one’s health and they can come on rapidly. That means you barely get the chance to wrap your head and emotions around each state of change before you’re dealing with three more simultaneously.

Knowing there is no happy ending at the end of this story, you face constant adjustment and acceptance which are exhausting both mentally and emotionally. All this turmoil adds up to something called, “anticipatory grief,” which is exactly what it sounds like; you’re mourning the person as the disease progresses, anticipating their eventual death.

None of this is generally a conscious thought process. After my mother’s passing, I understood it better, and that, at least, helped me cope with my father’s decline several years later. But until I realized all of this, I was just angry all the time. I was frustrated at why dad couldn’t remember how to sit down in the a properly, or just use a spoon, but 10 minutes earlier it hadn’t been a problem. Things literally changed on the fly.

In my case, the difference between caring for Mom vs. Dad is that my mother’s Alzheimer’s disease removed any expectation in my mind of her being cognitively aware enough to help herself. She had no clue what was going on around her, so it was slightly easier to adjust because she didn’t push back. Dad’s mental state was usually pretty good, so he pushed back – a lot. And I kind of got it; it’s tough to spend your life being the one taking care of everyone else and suddenly you feel like a helpless burden.

It really bothered my dad to need help with anything, like standing up from a chair, or that we had to restrict things like coffee because the caffeine aggravated his symptoms. As his condition changed, we tried to counter each new phase with alternative ways to keep him comfortable and safe while dealing with altered symptoms.

I don’t know how to tell you to deal with anticipatory grief. Everyone copes differently. Being aware of it can help a bit. If you’re caring for someone who is slipping away, spend what time you can with them. Be there with them, be present, and be kind to them and especially to yourself.

PUBLISHER NOTE: If you or someone you know is a caregiver, visit http://www.theoldnerdinthegym.com for resources, a podcast, and other information that might help.

The invisible side of caregiving.

Deer In Headlines
By Gery L. Deer

When you think of the term “caregiver,” you might have the image in your head of the dutiful family member looking out for an elderly parent or disabled child. What you see in public or on the surface is someone helping a senior citizen do her shopping or teaching a child with limited mobility to use an iPad. But, it’s the stuff you never see that is really the hard part of the job.

Caring for a family member is not something that comes with many benefits. Actually, there is only one benefit – looking after your loved one. Yes, there are some people who get paid to take care of a family member, but that’s rare and extremely difficult to

Shower prep for caregivers can be like gearing up for battle. Helping a senior parent with every day personal care can be hard to get used to – for both – but extremely necessary.

Medicines must be cataloged, dosed, and set into daily dispense containers. Tracking of administration is also necessary to ensure proper care, safety and financial maintenance.

Personal care is one of the hardest parts of caring for a senior parent. Different than helping a child with these issues, an elderly adult has a different perception of self-sufficiency and personal dignity. I can’t even imagine how hard it is for my father that he now needs help just to do something as simple as shaving or taking a shower.

As a Parkinson’s sufferer, Dad can’t hold his hands still enough to shave with a safety razor and we’ve had to go to an electric model. He does his best to try to do it on his own, but his hands can’t apply any pressure to the razor on his face so it misses, well, pretty much everything. So once a week, we do a complete, clean shave starting with a trimmer.

Showers also require some consideration to personal dignity while trying to ensure complete cleanliness. When I help Dad with a shower, it’s like gearing up for battle. It’s tough to get used to, for both of us. But we do our best. I just try to make sure he gets in and out without injury, get him clean and get him dressed. How would you feel if, suddenly, your children had to help you with trimming nails, combing hair, or washing? You have to be aware of your charge’s discomfort while still meeting the needs.

Managing medications is also a challenge for caregivers. I’m actually pretty lucky in our situation because Dad’s meds – for now at least – can be divided into two daily packets. Every Sunday, I refill a daily box dispenser and we have a record book to record every dose administered and by whom.

Money is probably the biggest sore spot for many caregivers as well because we end up having to handle our own homes as well as the finances of our charge. It wasn’t long after my mother became ill that I learned who the money manager of the house was as I grew up.

As is common with many elderly folks, Dad was letting bills go unpaid, utilities were being cut off, debt was mounting and statements lay unopened, piling up on the kitchen table – Never again. My siblings and I took over managing his money and paid off all his major debt so we only have living expenses, medicines and doctor bills to worry about.

The problem is that things won’t stay that way. People don’t understand how little Medicare and its supplements really cover and the expenses continue to mount as a senior’s care grows more complicated because things like Parkinson’s continue to progress.

Adjusting work to caregiver life is rarely easy, sometimes it is impossible. Many caregivers have to choose one over the other.

Naturally, The U.S. Congress is far too busy voting itself another ridiculous raise and cutting Social Security to bother considering how to better spend money to care for its citizens. After all, it’s “our” money. And there is no outside financial support for caregivers.

So, the bills continue to roll in – co-pays, lift chairs, vaccinations, home care (yes, it’s mostly self-pay), unforeseen changes in the health of the patient and the understanding that with Parkinson’s, diabetes and glaucoma, my father will get worse, even with the best possible care.

Tons of other things come into play too. When you’re a caregiver, you’re often the housekeeper, accountant, chef, chauffeur, nurse, clothes and dishwasher, and much more. The rest of the world doesn’t see the countless hours spent making sure the things like cracker packets and juice bottles are stored in a way he can easily open them with limited mobility.

Over the years, I’ve written many times about my experiences in helping to care for my parents. But people I meet always seem to be shocked how much we have to do that no one ever sees. So, when you see someone out in public dealing with something like this, just remember how hard it is and open a door for them or be patient when they’re sorting groceries for two households at the checkout. We appreciate it.

 

Gery L. Deer is an independent columnist and business writer. Deer In Headlines is available as a podcast at MyGreeneRadio.com.

Living in the family museum

Deer In Headlines
By Gery L. Deer

Although there is a lot of talk about millennials returning home to live with parents, the majority of Americans still move away from their family home. As a teenager, most people long for independence to explore different worlds, expand careers and so on while at the same time freeing themselves from the obligations and responsibility associated with living close to parents and immediate family.

But that wasn’t me. Yes, I had the same desire to see and experience the world, but I seemed to need a grounding to make it work properly for me. I did move away from my hometown for brief periods during college, a few years for work and the like. But for the majority of my life, I’ve remained within just a few miles of my family farm, where my father still lives.

For the last two decades, my family music group has called our family farm “home” and that’s where we practice and produce our shows. But it wasn’t until I began helping to care for my mother in 2009 that I ended up having to spend far more time in the home where I grew up than one might think is usual – or psychologically healthy.

My mother passed in 2011 but, a few years later, I had to repeat that effort as my dad’s health made it necessary for us to assist him as well. Fortunately, not to the degree Mom needed help, but once again the situation required me to be at his house several days each week.

My family home is pretty much as it always was with minor changes here and there. But to me it seems simultaneously totally familiar and completely foreign. My job makes it easy for me to work remotely, but there’s a constantly present, underlying distraction.

I’m not entirely sure it’s psychologically healthy to be in this situation sometimes. I’m surrounded by the past every day, as if my dad’s home is a museum with dusty, disorganized exhibits displayed out of context and unvisited.

Growing up, our family home was always a bit of a sanctuary for me, a place the difficulties of the world didn’t penetrate. Today, it can sometimes seem more like a workplace. There’s something disquieting occasionally about walking the halls in what used to be a nurturing home but that now serves another purpose.

Of my siblings and me I am the only one to have grown up in the house. Still, it can still feel very strange to be there now. Today, Dad occupies only certain rooms, but once upon a time the whole house rang with laughter and music, as the smell of homemade food wafted throughout. Now I walk through the dark, silence wondering where the years went.

Maybe it’s having come so close to losing my brother to a serious illness last summer that has triggered some of these deeply buried thoughts. But, whatever the reason, they’ve come blasting to the surface like a volcanic eruption.

Mostly I’m troubled by the fact that my father is so very alone in the world now, having outlived everyone close to him save his children. Within just a few years of each other he lost the aunt who raised him, his brother-in-law who was like a little brother to him, and, most tragically, my mother.

There’s no one left of his generation except a sister, who lives a few hours away, a half-brother whom he doesn’t know very well, and a couple of school friends he speaks to on the phone. These are problems he has that I can’t fix.

Someday, because of my birth position in the family, I’ll likely be the only one left of my mother, father and siblings. I can’t replace what Dad’s lost, so I spend my time with him trying to give him a good quality of life in the present. But there are days when we both sit melancholy and remember the past in the quiet emptiness and solitude of our family home.

Gery L. Deer is an independent columnist and business writer. Deer In Headlines is distributed by GLD Enterprises Communications, Ltd. More at gerydeer.com

Respite is theme of National Family Caregivers Month

Deer In Headlines
By Gery L. Deer

According to the latest numbers, around 83-percent of long-term care in the U.S. is provided by unpaid family members. Although it might not affect you directly at this point, odds are someone you know is caring for an elderly or disabled family member.

Family caregivers are saving the government and insurance companies billions of dollars every year and go largely unnoticed. Caregivers play many roles for their charges, from accountant to housekeeper and personal assistant to nurse. It’s a nonstop challenge with daily changes so there is no “normal,” particularly when caring for someone with an advancing deteriorative disease.

Lois Deer (right), mother of the author, passed away in 2011 after two years of full-time care by her family.

The term, “caregiver” usually conjures up thoughts of an adult child looking after an elderly parent, but that’s certainly not the only situation. Parents of disabled children, grandparents, or even siblings caring for a disabled or elderly brother or sister, are all dealing with a similar situation – too much to handle and not enough help.

Caregivers often suffer from enduring fatigue, emotional stress and broad-reaching financial hardship. Over time, trying to cope with all of this can catch up with a person, causing chronic health problems. The organizers behind the website Caregiveraction.org have declared November as National Family Caregivers Month with the 2015 theme of “Respite: Care for the Caregiver.”

The organization notes that most caregivers feel that respite is a luxury and many even view it as selfish. But trying to find a way to decompress on a regular basis should be made a priority.

Juggling one home, a job and a personal life can be tough enough, but when you’re doing it for two households it can break even the most resilient of people in a hurry. The majority of caregivers pull double duty in order to handle their own homes and families while seeing to the doctor visits, medicine regimens, physical therapy, and other demands of their caregiving charge.

That constant state of stress can often lead to long-term health issues. It’s important that caregivers care for themselves also, set aside time to rest, eat right, and seek support if no other family is available to help out.

Some Caregiver Facts …
 Largest source of long-term care
 Most (66%) are female
 More than half are age 18-49
 Most caring for elderly parents
 Many suffer loss of wages and benefits

There are a number of organizations with resources available to help with respite care. Be aware, however, that generally there is no insurance or Medicare / Medicaid coverage for these services and the costs must be absorbed by the patient or caregiver.

Financial stress is one of the most prominent problems for family caregivers. Many either lose their jobs due to regular absences or have to quit in order to provide full time care. And, when the patient has limited income or other resources, the caregiver picks up the fiscal slack, spending whatever they have to ensure bills are paid.

If you know someone who has recently become a family caregiver, please keep in mind that they may have a different set of priorities than before. Depending on the situation, it is likely their life revolves now around the person for whom they provide care. They may not be able to drop everything and go shopping or out to dinner at a moment’s notice. Be patient and supportive.

Of course there are those who gives the family caregiver a bad name. Anyone who does this out of some kind of need for financial compensation or constant personal praise won’t be seen as anything but self-aggrandizing and reprehensible.

There is no glory or martyrdom in caregiving. It’s emotionally draining and physically exhausting, especially if your family member is terminally ill. The pain of watching someone wither away is like nothing imaginable without first-hand experience.

If you’re taking care of a family member, remember to take care of yourself too. You can’t do anyone else any good if you’re suffering as well. Caregiving is hard work, on any level, and it should be viewed objectively.

You wouldn’t work nonstop on a job would you? Do whatever you need to do to take a little time for yourself every day. Remember you’re doing the best you can and accept help when it’s offered.

Helpful Resources …

Centers for Disease Control : http://www.cdc.gov/aging/caregiving/facts.htm

The Caregiver Space . Org : http://thecaregiverspace.org/

Greene County Council on Aging : http://www.gccoa.org

 

Struggling to care for seniors at home

Deer In Headlines

By Gery L. Deer

A recent article in The Atlantic discussed the question of the difficulty of finding adequate care for America’s senior citizens as more of them are choosing to remain in their own homes as they age. In the article, published April 27, 2015 by Alana Samuels, the author relates the story of her grandmother’s plight to find adequate, affordable home care near the college town of Amherst, Massachusetts.

A shortage of qualified Certified Nursing Assistants (CNAs) coupled with outrageous hourly fees made the task of caring for her Parkinson’s ridden spouse that much more difficult. The author’s grandmother eventually gave up on agencies and a friend helped out until her husband’s death a couple of years later. It’s a story becoming all too common today.

By the year 2030, more than one quarter of all Americans will be over the age of 65. More than ever, those people are choosing to remain in their homes as long as possible, relying on home health care and the assistance of family for everything from grocery shopping to bathing.

Over the last few years, a host of “non-medical” in-home care agencies have sprung up all around the country, spread by franchise. Most offer no skilled health care services and little more than baby-sitting. They can help with things like shopping, cleaning and some companionship for homebound seniors.

But, these home care workers are not permitted to help in medical matters, not even to distribute medications, as would a CNA or other state-registered, skilled health care worker. One published estimate by Genworth puts the cost of non-medical home at a range of $10 to $36 per hour. The extreme discrepancy is attributed to variations in region and the type of care required.

One question families should be asking is exactly what could an unskilled worker possibly do that’s worth $36 per hour? Still, most have few options available; it’s either a nursing facility or home care.

Plus, the home itself can be more hazardous than the disabilities suffered by the senior. It may be necessary to modify the home to accommodate “aging in place,” with zero-clearance shower stalls, raised toilets, grab bars, and much more. This also carries added expense and attention to which families might be unaware.

The fact is that it’s much better, psychologically, and far cheaper for seniors to remain in their own home. But most people caring for an elderly family member cannot be with them all hours – people have to work and care for their own homes and families – and still need outside support.

The first place to start is with the local agencies on aging. Most counties or regions have a non-profit organization such as this to help put families and seniors in touch with needed services such as meals on wheels, in-home healthcare, and more.

Be aware, however, that most services referred by these agencies are self-pay and are not covered by Medicare or insurance. The advantage, however, is that they can generally offer a discounted rate on certain services based on the income of the senior. Contact the local agency for details.

For support on in-home modifications, consult the local builders association for referrals to certified aging in place specialists. Most can provide design and construction information for everything from a simple grab bar installation to more complex additions such as elevators.

Additionally, financial and insurance companies out there might be missing the boat on a potentially golden profit center – “in-home care insurance.” Separate from long-term care or other types of health insurance, this could be a specific product that addresses the far less-expensive options of keeping a senior at home rather than in a skilled care facility. Give it a slightly lower premium and the ability to purchase later in life, and it would likely be less difficult to sell.

Before hiring anyone, caregivers should do their homework. Get at least three references from previous clients and do a thorough Google search on the agency you choose.

Whatever the overall solutions to the home health care problem, it’s clear something has to be done in a hurry. With incidents of elder abuse on the rise in nursing facilities, it’s imperative that families have alternate care options.

Gery L. Deer is an independent columnist and business writer. Deer In Headlines is distributed by GLD Enterprises Communications. More at gerydeer.com.

More family advocacy needed for elder care

Caring for an aging parent is, in my opinion, one of the most difficult and often painful experiences life throws our way. Providing a safe, healthy environment for an elderly family member is just as taxing as doing the same for a child.

What makes this process even harder is when the parent is resistant to help or simply won’t accept that they are no longer in a position to take care of themselves. Poor decisions, an inability to recognize when driving has become hazardous and, worst of all, when they will listen to anyone’s advice but that of their children, complicates the care process and causes serious damage to the parent/child relationship.

It’s hard to watch parents age and knowing you’re headed the same direction only solidifies the reality of it all. It’s harder still when they resist every attempt to maintain their health and sometimes doctors undermine your efforts by telling them they don’t have to do anything they don’t want to.

I understand that people need to make their own choices, but some shrink in a hospital cannot possibly know an individual’s mental status by talking to them once for three minutes and asking a half dozen pointless questions. “Do you know where you are? Do you know what day it is? Can you draw this box? Write your name.” “Draw this box,” are they kidding?

How about we ask them what their checking account number is, or the name of their insurance company? How about asking when they last paid their phone bill? These are vital questions to someone who is supposedly “competent” and yet this is not what is included in a psychiatric evaluation for a senior’s ability to make his or her own decisions.

Then there are those who are intent on taking advantage of the elderly person’s desire to feel “needed” and useful. These individuals worm their way into the lives of the elderly, showering them with compliments and creating a rift between the senior and his or her family. These unscrupulous people are trying to get money and property away from the senior and alienate children and others who are trying to protect their interests.

Deer In Headlines author Gery Deer is helping his brother Gary Jr and sister Cathy to take care of their father, Gary Sr. and it’s rarely easy work.

Laws addressing the rights of seniors, as well as those regarding patient rights, seem to take no account to dementia and speak only to protecting them from family members bent on securing money or locking them away in a nursing home. What about those of us who are trying to protect our parents and provide a safe, secure life for them in their own home as long as possible? Where is our protection and support? There is none.

Preserving a person’s dignity is difficult enough without being able to handle even the most basic decisions absent a mile of legal documents in place only to provide more money for lawyers. Power of attorney documents are meaningless unless the person is thoroughly incapacitated and no one will help without signing over deeds and financial statements.

Believe it or not, sometimes money has nothing to do with it! There are actually situations when families are trying to preserve an aging parent’s lifestyle, dignity and financial security. Someone should be out there advocating for us, not making it harder. Unless you’re loaded with money, there is just no support for people dealing with this kind of problem.

So what is to be done? Good question. I am all for protecting the rights of the elderly and maintaining their ability to make decisions, but there are many degrees of incompetence between fully cognizant and Alzheimer’s dementia and that should be taken into account.

My mother lost all of her reasoning ability as Alzheimer’s set in and it nearly bankrupted my family to get her under a guardianship so we could keep her safe and well-cared for. But when a senior has some competence but not all, that needs to be addressed and the family should be able to have some advocacy for protecting the interest of that individual without so many roadblocks.

Legislation should be put into place for the varying degrees of dementia and stop relying on the ‘one size fits all’ psychiatric evaluations that prove nothing more than the person can read a calendar.

 

Gery L. Deer is the editor and publisher of The Jamestown Comet.com an independent columnist and business writer based in Jamestown, Ohio. More at http://www.gerydeer.com.