Tag: aging parents

Create a Support Network in Your Hour of Need

Create a Support Network in Your Hour of Need

Online SupportPlanner from Caring Bridge
Interactive online calendar allows easy scheduling

Are you , or someone you know, facing or dealing with a health crisis? Are you desperate for a little extra help and support but don’t know where to turn?  Now, you don’t have to go it alone.

Ten years ago my husband had a heart attack. We had two high school age children who were knee deep in extracurricular activities, part time jobs, and college searches. My husband and I supported our family with our home based business, that on the best days required 24/7 attention from both of us. There was not time or energy in our days for what we were already doing let alone to deal with the extra demands of a sudden health crisis.  I didn’t know where to turn.

We called on a few family members to help out, who graciously availed themselves to us, but it was not an orderly, easy coordination of efforts and at times seemed more effort than help. Who can think, plan and organize at a time like that? I couldn’t.  CaringBridge.com did not exist at that time, at least in my world. It would have made all the difference.

CaringBridge.com is a non-profit organization that understands the difficulties inherent in coping with a life crisis. Its mission is to “amplify the love, hope and compassion in the world, making each health journey easier”.  The evidence is clear that it is fulfilling its mission.

The SupportPlanner is CaringBridge’s primary tool to assist people facing a health crisis such as the one my husband and I faced.  It is an online tool that makes coordination of support efforts thorough, easy  and efficient. It provides a centralized, virtual location to organize helpful tasks, such as the delivering of a meal, transportation, taking care of pets, etc. Only people who are invited by the user to view the planner can access the calendar and sign up for a task, ensuring privacy for the parties involved.

Several months ago, my friend Sandy was facing major surgery. She lived alone and was uneasy about the six week recovery period she was facing, when she would be unable to drive. Her sister had heard about CaringBridge.com and before Sandy even entered the hospital she had signed coordinated a full spectrum of support volunteers using The SupportPlanner and she did it all through email.  She coordinated meals, visits, errands, and drivers and Sandy received the support of a dozen well wishers throughout recovery. The support was a tremendous gift to Sandy and, I believe, resulted in a quicker, less painful recovery.

In honor of National Cargiver’s Month, I encourage you to visit CaringBridge.com and learn a little about what they have to offer.  You never know when you, or someone you care about might need support.

 

“Sundowning”

“Sundowning”

Sundowning is a pattern of behavior that occurs in the evening after the sun goes down in elderly people with dementia or Alzheimer’s.  You may notice that your charge, who may be somewhat lucid during daylight hours, loses ground in the evenings. My mother exhibited this behavior in varying degrees for about six months before she died. I did not understand what was happening at the time and once I did it was easier to handle.

The first time I experienced sundowning was one evening while I was visiting Mom at her apartment in the retirement community where she lived. She had not been doing well and recently had a fall. As we sat together, eating dinner and watching TV, she abruptly turned to me and asked, “Where is your Dad?”

My father had been dead for eight years at the time.  I studied her face trying to discern what information she was looking for. She was quite herself and lucid during the day at that time and I was caught completely off guard. I didn’t know how to respond.  Should I tell her the truth or go along with her delusion? I stumbled my way through it that night reminding her that he had died. She looked surprised and upset that no one had told her of his passing.  The question resurfaced again and again, in addition to others.

Sometimes I merely said, “He’s out” and she would go back to whatever it was she was doing. Other times she would push and prod until I told her the truth and then she would cry, every time it was if she was hearing of his death for the first time. It was painful for both of us.

Dementia is usually caused by illness or mini strokes that have damaged a person’s brain cells. Sundowning is thought to occur due to the correspondent damage of a person’s circadian rhythms, the internal clock that regulates the body’s physiological activities over a twenty four hour period.

There are several things you can do to try and minimize the effects of sundowning.

  • Keep the person active and awake during the day as much as possible. It makes it easier for them to fall asleep in the evening.
  • Plan activities during morning hours and keep the afternoon activities calm and simple.
  • When possible make sure the person receives morning sunlight and increase interior light before dusk.
  • Keep your loved ones life and surroundings simple and uncluttered. A sudden change or move can make it worse.
  • Sometimes confusion can be caused or aggravated by dehydration or hunger. Often the elderly turn away from food and drink, increasing the likelihood of deficiencies.

Most of all, knowing that sundowning exists can be tremendously comforting. I wish I had known then!

 

Accepting the Role of Caregiver to Your Aging Parents

Accepting the Role of Caregiver to Your Aging Parents

"Hydrangea" Photo by D Sander All rights reserved

Moving into the role of caregiver for an elderly parent can be a rugged journey along a treacherous path of frustration and indecision. As children of aging parents, we are often right in the middle of the busiest part of our own lives. We are not only juggling the demands of our growing children, we may be at the pinnacle of our careers, facing financial concerns as college expenses loom on the horizon and a whole array of other concerns that are likely to keep us awake at night, along with night sweats!

Becoming the responsible person for Mom and/or Dad is not something we are necessarily prepared to do. We still remember how hard we worked to move out of their lives and establish our own. It’s not uncommon to feel the tug of unfinished childhood business when the time arrives to hand back a piece of our lives to people who used to take care of us. It is uncomfortable and awkward to become the parent to a parent and it is likely to be as equally uncomfortable for the parent to give up their sense of control in the relationship, just when they are losing so much control of their day-to-day life.

It takes two people who are well grounded and comfortable with who they are to enjoy this journey. Most of us are not in that place! However, love allows for, and simultaneously demands, fluidity throughout life and caring for our elderly parent(s) is a practice field upon which we will hone a number of essential life skills.

Here are just a few:

Practice patience, not only with your loved one, but with yourself. Accept that we never have all of the answers, but we do the best we can with what we have.  We are always in a state of “becoming” and all will be as it should be.

Focus on the now. Today is all we have. Focus on the most valuable and meaningful thing in each moment. Consider that sitting with Mom and watching the birds might be just more important than spending an hour on the phone making doctor’s appointments.

Read. Reading articles, books and anything you can get your hands on that deals with the issues you are facing.  It is a very helpful way not only to gain a fresh perspective, but also to feel less alone in your difficulties.  When I was caring for my parents there was very little information or support available for the children of aging parents. Luckily, you can now find a plethora of information at your finger tips online. A few of the people I know personally are listed here in the Caregiving Section of my website  and any of them will gladly offer a hand.

Create space for you. This skill might just be the difficult one you will need to practice, but it is also the most important. Your soul must breathe, your inner spirit must live, if you are to continue to give to others as life requires of you. Caregiver burnout is not a pleasant experience, having been there myself, and it’s not good for you physically, mentally or emotionally to give until you can give no more. Keep your well filled and you will have what you need before, during and after the period of time you are caring for your parents.  Create space in your day, every day, for quiet, do-nothing time, even if it’s only ten minutes.

Exercise. Physical exercise is an excellent way to burn off the excess adrenaline that bombards one’s body during stressful times. Just be alert to any tendency you might have to over exercise and honor your body’s need for rest and relaxation.

Fill your backpack with a few of these essential life skills and climbing the mountain ahead will be easier than you may imagine.

SUPPORT FOR CAREGIVERS

SUPPORT FOR CAREGIVERS

There are many caregiving blogs offering support, advice and information for the caregiver. Each has something unique to offer and worth a visit if you are caring for a loved one. It’s a great place to talk about issues that concern you and see how others are handling their particular set of circumstances. Many websites have come online and new opportunities arise every day. A few are listed below and more will be added from time to time.

If you are a caregiver, take advantage of the information and support that is available. It’s really tough to go it alone.

 

INDIVIDUAL SUPPORT

TRANSITIONING AGING PARENTS – Dale Carter offers personal support for the caregiver. READ MORE

RELATIVE MATTERS – Chris Moon offers caregiving consultancy services in England. READ MORE

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ONLINE AND GROUP SUPPORT

HELPING AGING PARENTS – A counselor,educator and writer, the author of this blog shares her insights and experiences as a long distance caregiver for her elderly parents until their death, and now her husband’s mother.

MINDING OUR ELDERS – It is the mission of Minding Our Elders  and its author Carol Bradley Bursack to shine a light on the isolation often felt by caregivers and seniors and to give them a voice.

THEY’RE YOUR PARENTS TOO – “How siblings can survive their aging parents without driving each other crazy.”

THE INTENTIONAL CAREGIVER  –  I love this website! Shelley Webb is a registered nurse, geriatric care manager and health coach. Having cared for her father who suffered from dementia and congestive heart failure (along with neuropathy of the legs), she developed a keen interest in helping caregivers navigate their way through their own difficult but rewarding journey.

CAREGIVER.COM – Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, we produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers, the “Fearless Caregiver Conferences”, and our web site, caregiver.com which includes topic specific newsletters, online discussion lists, back issue articles of Today’s Caregiver magazine, chat rooms and an online store. Caregiver Media Group and all of it’s products are developed for caregivers, about caregivers and by caregivers.

NATIONAL FAMILY CAREGIVER’S ASSOCIATION 

The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well being.

CAREGIVING.COM – A Community website for caregivers.

AARP – Caregiving Resources – Everything you need to know and more!

 

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CAREGIVING ARTICLES

HUFFINGTON POST on CAREGIVING

NEW YORK TIMES BLOGGER PAULA SPAN – You will find an excellent selection of topical articles on caring and coping with aging parents. Here are a few:

AGING ABUNDANTLY ARTICLES ON CAREGIVING

 

Mom’s 100th Birthday

Mom’s 100th Birthday

Mom's 95th Birthday Celebration
Mom's 95th Birthday Celebration

Today is my mother’s 100th Birthday. Though she did not live to blow out the conflagration on her birthday cake, I think she would have liked to. All things being equal, the world conspired against that eventuality. My mother was a woman who saw little in her life’s accomplishments, though they were many. She did not celebrate the number of meals she cooked in her life time, the number of loads of laundry she completed, or the number of times she came to the aid of someone in need. She did not keep track of how many batches of cookies she baked for her children, her neighbor’s children, her grandchildren, her great-grandchildren, and the church bizarre, while rarely eating sweets herself. My mother did not indulge in back patting. To the modern way of thinking, her perspective was flawed.

To her credit, she was able to brag about one thing and that was her age, once it advanced to the point where it surprised even her. In her last years, which numbered ninety-seven, whenever I took her shopping she would, without fail, start a conversation with a clerk in each store we visited. Often dispensing with all formalities she would get right to the point. Leaning into the individual conspiratorially (all five feet and ninety-eight pounds), with a decided twinkle in her eye, she’d pose her question, “I bet you can’t guess how old I am”. Then, stepping back she waited until they selected and announced a number that was invariably, by intention or design, lower than the actual one.  My mother would cherish her secret a moment, and then, as conspiratorially as before, divulge the truth. The clerk invariably responded to the truth with astonishment (by intention or design) and Mom beamed with the pride of accomplishment.

My mother was proud of this one accomplishment in her life, although it was easy to sense that she knew she was not entirely responsible for it. The pride of the moment was far more complex than she probably even knew herself. Though all she had done was to manage to survive, she had survived an exceptionally long life, very little of it of her own choosing. She had made the best of it and that truly was a feat. She survived and survived fairly well. Her kids grown and more or less happily married, her husband exceptionally cared for until the day she buried him, her house clean, her cookies baked, she could rest on her laurels long enough to be proud of her age.

It was not hard to see that beneath all of this false bravado was a woman who had done very few of the things she could have done, and had the times been different, would have done. Although I could not quite understand or name her actions at the time, now, three years after her death, I understand completely.  I face my own advancing age and I am much more bothered by what I have not done than what I have.  My mother’s restlessness was incomprehensible to me at the time when I could have made a difference and yet, I feel quite certain that she was locked too tightly within society’s boundaries to have broken free even with assistance.

I continue to wrestle with my family’s choices about her end of life care. She had no health problems that would have prevented her from making it to one hundred. I believed then, and I believe now, that she could have and would have if things had been different. But we chose her end of life care because she would not choose her own and as a result she was unhappy (on the inside), tragically, deeply, beneath the surface unhappy, much as she had been and tried to deny throughout her life.  Sequestered in a “retirement community” she felt cut off from her family, not because we didn’t “visit” but because we were “visitors” and in some sense no longer family. Her apartment was not “home” despite her valiant efforts to make it so. Surrounded by the feeble, the sick and the dying, sequestered within the walls of a commercially designed and decorated building, she felt deeply cut off ~ as much from the earth as the family. Nature had sustained her when nothing else did.

She did not have it within her vocabulary to ask for, or if necessary demand, what she wanted, alas needed,  to end her life properly. She had spent a lifetime denying her needs, how could her dying have been any different?  She chose to relinquish her preferred choice and take the path of least resistance. She chose to die instead and give up on reaching her goal of making it to one hundred. After all, did she really have a choice?

Would it have made any difference to anyone if she had lived another three years? Would her days have counted for more? I don’t know for sure, but I believe that to her it might have been among her greatest achievements, to have lived to be one hundred and to receive a letter from the President, recognition for a race well run, she might have died in peace. I know it would have made a difference to me.

A Gift for Mom

A Gift for Mom

Photo by Chalmers Butterfield

My mother lived to be ninety-seven years old. Born in 1911 she saw the world undergo enormous changes. She lived a life that was not without its problems, but always seemed to find a way to give to those in need. When she and my father sold the family home and moved into a retirement community it was an enormous change for her. She didn’t know what to make of apartment living after tending to her own home and gardens most of her life. She struggled to make it “home” and for the most part, she succeeded. When my Dad died a few years later, she was adrift. Disabled from a stroke in his mid-sixties, she had hovered over him and cared for him for twenty years. She was a caregiver by nature and I learned, first hand, most of the tricks of the trade.

For the next eight years, my mother struggled to make sense of her life, to understand what it was she was supposed to do with her time while she waited to die. At first she rallied the necessary support from her children to fulfill her bucket list. Then she turned her attentions toward her neighbors in need. She baked cookies, washed laundry, fetched mail and looked in on sick and dying friends. There came a day, however, when she could do this no longer. One by one she gave up her caretaking activities. It was her turn to be cared for, but it was a completely unfamiliar role and she fought it every step of the way. This made it difficult for her children.

As we age we are asked to change our idea of ourselves and our purpose, sometimes multiple times before we die. As our physical and mental capacities diminish placing limits on our accustomed activities, we must find new ways of understanding who and what we are. For many it is difficult to live without a purpose, or for those like my mother who played more or less the same role her entire life, impossible. Trying to comfort my mother by distracting her was the only thing we knew to do. It may have been the only thing we could do. After all, each of us must make peace with our own lives, no one else can do it for us. This is the job of the elderly. This is the purpose of the last years in life.

It is hard for the living to understand the dying process. It is almost impossible to plan in advance how we will respond. Watching from a loving distance, as our parents pass through this difficult life process is their last real and valuable gift to us. We have much to learn from them even or especially when they are dying. What we witness will inform how we will handle our own last days. It may inform how we live from that day forward. Walking with them, loving them, and allowing them to do whatever thrashing about they need to do as they wrestle with their living and their dying is our last gift to them.