Mom and I: 5 Tips for Providing #Care for an #Elderly Parent (Updated)

Mom and I
When my Dad (retired Army, Vietnam War and Korean Conflict) died of complications from lung cancer (tobacco smoker from age 17) on October 7, 2006, my Mom and I were left without the "heart of the family."

In every family unit, there's always the person who can keep things light-hearted and fun...and that was my Dad. His smile, humor and storytelling often left me giggling as a child, and smiling or laughing as an adult. His death started my Mom and I (not to mention my family) on a journey. That journey has been, at times, difficult. And, like any other journey, there comes a point when travelling down the road is no longer all there is. You begin to encounter "tests" to your character, integrity, spirit, and ingenuity.  Simply, situations that you pray you can do well at, make decisions that don't leave you full of regrets.

In response to the journey I undertook, I only wish I'd known then what I know now about how to care for an elderly parent. I don't pretend to have made all the right decisions, only that I have few regrets about what I did decide. In that process, I've learned a few things. In the hope that my experiences will save someone else heartache and trouble, I share these tips with you.

Tip #1 - It's not too early to move a parent into independent living/assisted living if their spouse has died.
For the last few years, I've encouraged my Mom to move into independent living or assisted living. In fact, her doctors told her, "Do it now, sweetie." That came from her oncology doctor, who re-assured her with the story that, "My mom is at an independent living and she loves it!" My Mom would refuse, and I supported her independence. After all, if she felt independent, she should enjoy as much of it as possible. But I always warned her that I would step in when the time came.

This past November, 2012, things started to go downhill fast. From multiple falls to broken ribs--which she didn't tell me about for a few days, until I rushed her to a med clinic where they confirmed my fears--to severe arthritis that made her incontinent and painful to walk, I started to feel like I'd sat down in a roller coaster ride that was just getting started. As we moved into December, the ride was moving at full speed. We were on a collision course with a swiftly approaching reality that she could not live alone.

Tip #2 - Take advantage of services like HomeInstead.com
"How can I get my Mom to her doctors' appointments, as many as two per day, and not end up losing a lot of work time?" Often, these doctor's visits were check-ups, not "We're going to make a decision and need your input" kinds of visits. After several absences, I had reached the end of my available vacation days. Desperation was starting to set in, then I remembered an email I'd received earlier that week.

The email came from my wife's co-teacher at Sunday School. He offered several alternatives, mainly HomeInstead.com and another. I promptly wrote to all of them via email and HomeInstead.com was the only one who responded in a timely manner, indicative of their high level of service!

HomeInstead.com has been a godsend that I'm extremely grateful for. Jodi White and Ruth in the San Antonio branch of HomeInstead visited my Mom and I before a care giver was assigned. They listened to her, and as they spoke, I realized that the isolation stemming from my father's death had resulted in depression. This companionship is important for elderly folks because they easily make friends with others who may not have their best interests at heart.

I still remember listening to National Public Radio's story on this topic the same week HomeInstead folks visited my Mom and I. It was a fortuitous broadcast because that same week, I realized my Mom was in such a situation despite my cautions. In her home country of Panama, the way elderly are cared for is that 24/7 maids are hired to provide support. In the United States, hiring a housekeeper, especially one off the street, can present many trust issues. Preying on the elderly is a growing problem:

When we age, strength and memory decline and we depend more on others, who don't always do right by us. What's new is that reports of abuse of senior citizens are increasing, and "abuse" has come to include theft.
Read more: http://www.stamfordadvocate.com/news/article/Preying-on-elderly-An-age-old-problem-worsens-325420.php#ixzz2NQw0xt3u

Unfortunately, it seems the elderly are "wired" to be more trustworthy and ignore the cues that once would have let them know things weren't quite right.
"The older adults rated the trustworthy faces and the neutral faces exactly the same as the younger adults did, but when it got to the cues of untrustworthiness, they didn't process those cues as well," she says. "They rated those people as much more trustworthy than the younger adults did." (Source: NPR's Why it's easier to scam the elderly, 12/6/2012)
A part of this problem is that the elderly need the social engagement, no matter who provides it. The social connections with others, no longer available because of my Mom's medical incidents in the last few months kept her from bingo games, were clearly needed. In December, 2012, without HomeInstead.com's involvement, I honestly think I would have lost my new job with excessive absences. HomeInstead filled in for me, driving my Mom to to the Doctors' visits.

HomeInstead staff also provided moral support and advice during one crisis that had me up late at  night, and they periodically invite my Mom and I to various functions. This kind of vibrant support network goes far beyond what one or two care-givers might provide.

If your elderly parent needs a companion--vetted, criminal background check, etc.--then I urge you to contact the HomeInstead folks in your city and get their support. They do quite a bit, not just driving your elderly parent from place to place.

Tip #3 - Get power of attorney, medical power of attorney, DNR, etc. paperwork in your hands.
When my Dad became ill, and decisions needed to be made, I was grateful that my parents had had the foresight to setup a living will, craft a Directive to Physicians, grant me Medical Power of Attorney, and a Do Not Resuscitate (DNR) order. As important as the other documents are, the durable Power of Attorney provides one with the ability to act in the best interests of a parent who can no longer make those decisions--especially financial ones--on their own.

One of the things my parents didn't do, as far I knew, was craft a Power of Attorney. My wife's family was quick to point out--having suffered with their own parent's death--that such a document was critical to ensuring quality care for my mother. I'm grateful for that hard-won wisdom, even as I moved slowly to seize it. Like I said earlier, it's a sobering thought to realize you are having to step into this care-giver role.

Yet, to not do so is to court disaster and major nightmares for all involved, especially the person who needs care. I heard many stories from colleagues about what happened when power of attorney, medical or durable, was not available.

It is tough  to have to step up and provide this level of care for your parent, and I often console myself with the simple direction--amidst the bewildering array of choices, decisions, and information one has to deal with--that my task is to act in the best interests of my Mother. As the lead physician on my Father's medical team told me during my father's last week alive, "Your role is to actualize his wishes as he expressed them in the document." That is a liberating feeling...I'm working to do what my parent(s) would have wanted me to do if they were standing in my place.

Simply, what will best serve my Mother? In retrospect, it is a simple direction that should be obvious. For me, it's a touchstone concept that grants clarity and helps me better understand what steps to take next. I suppose that my desire to have this touchstone flows from my work expectation...simply, what is best for the organization? It allows me to assume the role of a disinterested agent acting without the emotional attachments that might cloud my judgement or cause me to stumble. I can only pray that this approach will continue to yield positive results in the worst situations. I have faith that it will, having gone through something similar--albeit shorter--experience with my father's death.

You may notice I use the words "simple, simply" quite a bit in this section. Make no mistake, simplicity stands with a flaming sword at the gateway of confusion, mayhem, and frustration. Of course, simplifying tough processes may be the technical writer in me trying to make sense of the insensible, bring order to the chaos of care-giving.

Tip #4 - Document everything.
One of the most liberating, cleansing steps I have taken has been to document what's going on. As a writer, I have no doubt that documenting what is happening helps me process stressful events, externalizing what's going on so that I won't fall into an emotional quagmire that impairs service. Documenting everything, of course, has made it easier to share critical data with attorneys and family members who may be wondering, What exactly has been done?

Another neat organizational component is keeping track of who exactly ARE the caregivers--from HomeInstead to Doctors, etc.--and having that list available. When working with HomeInstead, for example, I shared my list of care providers (which included their addresses and phone numbers) via GoogleDocs so that it would be easier for them to facilitate transportation and stay up to date.

To facilitate tracking of important dates, I also have relied on Evernote.com to organize all appointments. That handy little checkbox enables me to check-off items that have been completed, and I've found it more helpful than a calendar.

As I step forward to help with managing finances, I've also had to track bill payments, and organizing it all in a GoogleDocs Sheets (a.k.a. Spreadsheet) has made it easy for me to track expenses and keep a budget up to date.

Finally, I also encrypt digital versions of my Mom's identification cards and badges (e.g. AESCrypt.com) and use KeepassX to manage various accounts and passwords. Even if my files are stolen, I know that no one will be able to access her confidential documents in digital format. Since my Mom had archived hundreds of financial documents as paper, I took the step of shredding them. You can usually find a shred-while-u-watch service and this is a life-saver when having to eliminate old materials.

Tip #5 - Ask for help from others.
You know, if I had to do it over again, I wouldn't hesitate to ask for help from my co-workers and others. It's amazing what I've learned when I've been brave enough to broach the subject and I'm terribly grateful to those around me who shared their stories of service, often in the face of familial malfeasance. Their advice, even just hearing their stories, has provided many a helpful turn.

For example, as anyone who has done it, deciding to commit your mother to an assisted living center, no matter how wonderful it may be, is a tough decision. You essentially have decided--with or without their feedback depending on Doctor's advice--that they can no longer be adults living alone. Rather, they are adults who need constant care and support. While the parent can understand they can't live alone, they may reject--or be depressed at the loss of independence--the decision that's been made.

When I brought up the subject, my work colleagues immediately pointed out that they wouldn't hesitate to take action. This courageous expression of how they would care for their parents not only moved me to action, but helped me better understand at what point I should step forward as my parent retreated from independence that each of us treasures.

I am so grateful for their insights.

Conclusion
"What would Dad do?" This question is ever-present in my mind during this time of uncertainty as I strive to do well by "she who bore me," an awe-inspiring phrase if I ever heard one. I often feel Dad is with me as I make decisions, and a part of me explains what's happening, hoping for his approval. Ah, so little changes even when Dad has been gone for so long.

As I reflect on that question, I realize that I must prepare my own children so that they will know the road ahead, that they will not suffer the uncertainty I have undergone in providing care to someone who is not quite themselves anymore. I urge you, whether you are caring for elderly parents or about to become elderly and hand the keys of the kingdom to your children, to follow these tips.

The care you receive when you can little understand what is happening to you will depend on how well you accomplish this.

Additional Miscellaneous Tips

  • Veteran or Spouse of a Veteran? If you're a veteran or spouse of a veteran, you may be entitled to certain benefits to help defray the cost of assisted living care. Be sure to check with a Veteran Claims Agent (such as Jim Hanna in the San Antonio, Texas area).
  • Clean out your house now. You'll know you've bungled this one when you're working your way through 52 bags of trash that meant something 20 years ago but now is just so much junk. Don't put this burden on your children...clean out your less than humble abode now so that your children don't have to suffer this way. In fact, I like my daughter's approach. "Dad, I can imagine the conflagration already."  Ah, an apple doesn't fall far from the tree.
  • Clearly label heirlooms, etc. and who gets what. As an only child, I've been fortunate (or unfortunate given the junk crowding my garage that will soon find its way to a dumpster) in not having to deal with  having to decide who gets that treasured family picture (thank goodness for scanners that allow me to digitize pictures) or ashtray (who the heck wants an ashtray?!?). One neat tip a colleague gave me involved labeling every item in the house, then providing "Inheritance bucks" to each family member who had a claim...they could spend their Inheritance bucks any way they wanted, but only so much. Clever idea.
  • Ask for frequent hugs from your children. If you're caught up in this, there can be nothing so affirming as a hug from your children, in whose hands you will soon be.



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Everything posted on Miguel Guhlin's blogs/wikis are his personal opinion and do not necessarily represent the views of his employer(s) or its clients. Read Full Disclosure


Comments

Miguel, thank you for sharing your story. Your parents are/were very lucky to have you as their advocate. As someone who traveled down the same road caring for my elderly parents and disabled brother (who are now deceased) I think you have given your readers some very good advice. I would add that caregivers need to make sure that they take care of themselves to prevent burnout. Exercise, personal time, and other stress relieving strategies are a must. Asking for help is part of that equation along with recognizing that sometimes you can't do everything and that's OK. Best wishes to you and your mother!
José Vega said…
Timely info as I am the only care giver and getting tougher to attend to her needs.
Mark Dunk said…
Thank you for sharing. We are going through similar circumstances right now.

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