Caregiving 101

Taffy Cannon

• Publisher: Pilgrim Press
• Year: 2022
• ISBN:
  9780829806410
• Topic: Medizin
• Subtopic: Pflege

"Suffering is a complex phenomenon. So is the experience of caring for people who are suffering, especially if they are loved ones. It is essential to have resources that allow us to better cope with such events and processes. This book is a great contribution in this line." —Dr. Luis Cruz-Villalobos, author, clinical psychologist, PhD (VU Amsterdam)

Nobody is ever ready. When her brother had a stroke, Taffy Cannon was thrust into the realm of caregiving: the medical lingo, the legal paperwork, the spiritual exhaustion. Caregiving 101 offers practical guidance from the author's own experience, from the formation of a support team to the options for long-term care. Though caregiving decisions can be difficult, Cannon reassures caregivers that they are not alone. Taffy Cannon is also the author of 14 mystery novels.

EIGHT THE NEW NORMAL

Most caregiving situations start with a flurry of activity.

There’s so much to be done, and so little time, and so many unanswered questions.

Eventually, however, you begin to realize—and hopefully accept—that you have moved out of crisis mode into your new normal. What’s more, everybody in your loved one’s family and larger world will also need to accept and adjust to this realization.

Not everybody will reach acceptance at the same time.

This transition isn’t easy. In fact, it can be desperately hard. So far, as you struggled and juggled, you were busy reacting. That was the only way to move while hoping things would get better.

Reaction isn’t a flaw. It’s a reality that allows you to keep trudging forward.

Then one day you begin to accept some combination of these possibilities: (a) the crisis stage has abated, at least for a while; (b) the crisis stage may not conclude in anything resembling the near future; (c) the patient’s condition is worsening; and/or (d) the patient either isn’t getting better or is doing so at glacial speed.

The world shifts again and slows way down.

MAKE AN ASSESSMENT

You’ve made earlier assessments of what was happening and where this was likely to lead you. It’s time to do the same thing again.

You’ve learned far more than you realize, education you’ve absorbed from many directions simultaneously. You may not even remember whose wisdom you have taken to heart and which well-intentioned suggestions you have chosen to ignore.

Take some time now to think about everything. The big picture. The little pictures. The frames of your loved one’s life and your own.

There’s no rush and there will not be a quiz.

Where Are You Now?

Moving back to the very beginning, consider the patient’s initial condition, current condition, and the major intermediary steps. What has been the trajectory? Up, down, sideways? It’s likely that you’ve been on all three paths at one time or another.

Which way is it moving now? Do you anticipate that changing over the next three months? Six months? Year?

What Is the Medical Situation?

This may also have been all over the place, but by now you probably have a pretty clear diagnosis, an established treatment plan, and a pathway for future treatment and medication.

Is this what you were expecting? If not, how does it differ? Are there areas where you anticipate more (or different) treatment in the future?

What Is the Prognosis?

This may or may not be clear. And it may not be good.

If there’s a prognosis for a full or significant recovery, you are probably already planning ahead, while perhaps quietly regretting that it’s taking so long.

If the prognosis is unclear, why? Is it the nature of the illness, problems particular to this patient, general uncertainty, or a combination of all these factors?

If the prognosis is poor, who made this determination? Medical personnel, the caregiving team, other family and friends, the patient? How has this information affected the patient, family, and caregiving team? Is everyone in agreement with the prognosis?

Are Finances in Order?

At this point, you should be able to snap off a yes or no answer to this one.

If it’s yes, congratulations.

If no, consider where you are now and where you were at the beginning. It’s quite possible that you’ve made more progress than you realize. Summarize the remaining liabilities, outstanding obligations, and dangling problems.

Is there something you’ve put off? Time to get started on it. Take baby steps and begin with something relatively small that you are likely to be able to finish or resolve.

If you’ve put off seeking professional help until a little bit later—it is now a little bit later.

What’s the Living Situation? How Might It Change?

Many long-term caregiving situations will involve changes in environment as matters progress. These issues are pivotal.

These changes may involve physical adaptations to the existing living space, hiring caregiving help, distance care, adult day care, respite care, assisted living, skilled nursing, memory care, and hospice.

If there’s no current need to change or adjust the patient’s living space, consider yourself fortunate and move on.

What Are Current and Future Caregiving Needs?

This can be difficult to assess or confront, often because nobody really wants to admit that they may have signed on for a lifetime commitment.

Where are you now in terms of time and responsibilities? For your loved one? For yourself? Where are you likely to be down the road a stretch?

Be honest with yourself, even though it may be hard.

If there is a likely or predictable decline in the patient’s future, the time to begin thinking about this is now, not when it becomes a sudden crisis and the world blows up again.

After you spend some time with these questions by yourself, you should bring them up with other family members and caregiving teammates. Whether or not they have decision-making authority, you are all in the same boat and the best way to avoid leaks is to make sure it’s tightly sealed to begin with.

If you are all geographically convenient to one another, the easiest way to do this is with a relatively informal gathering of the concerned parties. Leave the patient out if you possibly can. Make it a specific meeting with a general agenda and don’t spring it on anybody unannounced. Have somebody bring snacks.

If the people involved in these discussions are physically distanced from one another, set something up with Zoom or another online private discussion system. That will allow participants from anywhere on the planet and you’ll get to see each other during the discussion.

Taking Away the Keys

This is perhaps the single most-dreaded moment in all caregiving. Losing the ability to get into the car and just go is awful. If you doubt that, take a moment to consider how you would manage if you could never drive again.

Enlist the aid of the patient’s physician. Sometimes citing “doctor’s orders” can help. Or even be enough.

Present a united front with other members of the caregiving team and discuss in advance who will say what. Make sure that your emphasis is on protecting your loved one and keeping them safe, but don’t be afraid to use scare tactics if you think they’d be more effective. Even somebody with memory loss understands that you don’t want to accidentally plow into a bus stop or wipe out a group of children in a crosswalk.

Be sure to have concrete plans for alternative transportation ready in order to assure your loved one that they will still be able to get around. Insurance sometimes covers transport to medical appointments. Check with the senior center about local shuttle services or with the church for folks to provide grocery shopping transport.

Public transportation can be useful for short hauls if the patient is already comfortable using the system. Uber and Lyft may be problematic, but most areas also have freelance drivers who can be hired for senior transport.

If the vehicle will remain after the patient’s driving privileges are gone, put in a kill switch. Or move the car to a different location and say it’s in the shop. Substituting keys that won’t work on a familiar key ring can also be effective.

Dementia and Memory Impairment

Memory issues in someone you love will break your heart over and over again.

If you are dealing with any form of dementia—or impairment from strokes, traumatic brain injuries, tumors, or seizures, all known as brain “events”—you are far from alone.

That’s the good news. The bad news is that most brain events are not reversible. Figuring out how to prevent or fix these problems remains stubbornly elusive. In addition, most forms of dementia grow steadily worse over time.

Invest in the most widely used and respected book, The 36 Hour Day by Nancy L. Mace and Peter V. Rabins, now in its sixth edition. Also get the Harvard Medical School Special Reports on Improving Memory and A Guide to Alzheimer’s Disease.

Explore the Alzheimer’s Association at alz.org, which offers a wide range of publications, seminars, support groups, local resources, and information for caregivers—along with a 24/7 helpline at 800-272-3900. This is an excellent way to find a support group, and you should have one.

The Family Caregiver Alliance (caregiver.org) has many related publications, including the excellent Caregiver’s Guide to Understanding Dementia Behaviors.

The unfortunate reality of dementia caregiving is that when you are in the thick of it, there usually is little time for any of this. In addition, because your loved one looks the same and may cycle in and out of dementia behaviors, outsiders can be judgmental if you’re having trouble dealing with it.

Be very c...