Tag Archives: caregiving

The tethered caregiver

Painting courtesy of Mary Riesche Studios

Painting courtesy of Mary Riesche Studios

Imagine that you are the primary family caregiver for a loved one with dementia in your home.  You have no time to yourself while in the house so how can you possibly find the time to leave your loved one alone to complete some pressing errands?

But you do leave the house and you do leave your loved one alone at home, because you haven’t figured out how to get someone else to do those errands for you, or you don’t know how to secure someone else to watch your loved one while you do the errands.  I favor the latter option because a 24/7 caregiver absolutely must get out of the house and feed her soul while crossing items off her To Do list.

I went to Staples office supply store yesterday to pick up three items for my writing quest: a new thumb drive that I can trust to store my magnificent masterpiece of a manuscript; a new mouse pad because my right wrist and hand have worn out the previous one; and a ream of lined filler paper for taking notes and drafting new ideas.

Because it is currently back-to-school shopping time, Staples was crazy-busy yesterday.  The checkout line was very long and directly behind me was a young mother with a shopping cart filled with supplies for her two school-aged children.  An older woman with two items asked if she could please go ahead of her because she had a sick husband at home; the young mother graciously agreed to let her do so.  When it was my turn at the register, I turned to the older woman and asked her to go ahead of me to which she responded, “Oh thank you so much, you see I have a situation at home and I need to get back quickly.”

Have any of you been there – done that?

Do you know someone who has?

The following advice goes to those of you who know someone in a similar predicament as the woman at the Staples store: be the respite that person needs.  Don’t wait for them to ask for help – they won’t ask you; you must make the first move.  Put yourself in that someone’s shoes and imagine racing through your errands, all the while freaking out wondering what’s going on in the house while you’re away: the person with dementia wandering away from the house or falling down in or around the house, turning on the stove or running the water without turning either off, or letting someone inside the house who should not be inside the house.

Now it’s your turn: imagine the worst-case scenario and apply it to this situation.

Now do something about it.

Other articles to inspire you:

Solo Caregiving; Helping an Alzheimer’s Caregiver; Caregiving: Grief, Guilt, Exhaustion, and Discrimination

A normal day, caregiving style

Approaching The Final Destination.  The attached article focuses on one caregiving journey that is coming to an end.  Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination.  Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.

Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards.  I’m sure most family caregivers can get in touch with that.”

Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced.  The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.

My father and my sister-in-law, both of whom died from Alzheimer’s.

My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old.  In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.

Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination.  Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives.  I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.

Normal?  What does that mean?  And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care.  What liberation!  What freedom lies on the horizon!

No, that is not what the caregiver is thinking.  He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.

But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.

What we all would give for just one more day of abnormal normalcy with our loved ones.

But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.

Freedom from pain; freedom from physical and cognitive restrictions.  Let it be.

Victories in Caregiving

This Magic Moment.

Mary's July Visit to Redmond 010The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.

Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable.  Sometimes the unpredictability brings heartache and extreme difficulty.

However …

sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty.  Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.

Adult children who parent their parents

A LIFE BEYOND | SOUL BIOGRAPHIES.

The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother.  The same could have been filmed of a spouse-caregiver because the message is the same.

Please make every effort to watch this film straight through without distraction.  I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.

There is no denying that caregiving is extremely difficult.  But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.

One of many walks my father and I took.

One of many walks my father and I took.

As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life.  I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.

I feel blessed to have been on the caregiving journey with my father.  And my, oh my, do I still miss him.

Alzheimer’s Answers; Are you ready to be a caregiver?

Alzheimer’s Disease: Your Questions Answered | PBS NewsHour.  We need all the help we can get in order to make well-informed decisions about any caregiving journeys that might occur in our future.  The attached article shows a snapshot of one adult daughter’s 24/7 caregiving journey with her mother.

Perhaps you’re saying that you don’t anticipate your parents requiring any caregiving assistance in their frail years (perhaps your parents have already passed so no need exists there.)  Do you have any siblings? close friends? a significant other?  If you answered “yes” to any of those designations, the possibility exists that you will be called upon – or you’ll volunteer – to be of assistance to someone who needs help with their activities of daily living (ADLs).

Taking care of a loved one is no easy task.  It doesn’t matter how much you love the person, your patience and your abilities will be tested.  I truly admire the subject of this PBS article.  Rebecca Wyant is the full-time caregiver and guardian of her mother, Mary Wyant, who was diagnosed with Alzheimer’s at the age of 65.  Mary moved in with her daughter in 2006, is now 74 years old, and Rebecca is in her seventh year of personally providing her mother with full-time care.

How does Rebecca do it?  She thought she was prepared for the task but soon discovered that finances, and creative ways of managing her mother’s care, are dwindling resources.  With that said, however, Rebecca states that she is the only person who can provide the care that she can.  She agrees that professionals could provide the care, but absolutely no one could possibly care for mom as Rebecca can.  That part of the video disturbs me a bit, and I’ll tell you why.

Dad, myself and one of his caregivers.

Dad, myself and one of his caregivers.

I was an Alzheimer’s Association caregiver support group facilitator for several years and heard the voiced concerns of those daughters, sons, and spouses, who carried a great deal of guilt on their shoulders for not being able to keep up with the care of their loved one.  They did provide the care initially, and then found their abilities wanting – and their health declining.  They eventually made the very difficult decision to place their loved one in an assisted care setting.

Here’s the story of “Constance” and “Robert.”  Constance first came to my support meeting at the age of 80 having already taken care of Robert at home for the previous three years since his diagnosis.  Constance’s health started to decline due to lack of sleep – Robert’s dementia had no respect for the clock.  Added to that dilemma was the fact that she had no existence outside of her house.  She was trapped!  Her friends abandoned her, all the social activities in which she had participated fell by the wayside, but she refused to move her husband into an assisted care setting, even though she felt they had the finances to support such a move – many do not and have no choice but to provide 100% of the care.  “No one can take care of Robert like I can.  I would never do that to him – placing him in someone else’s care.  That’s my duty as his wife; a duty I take seriously.”

Fast forward one year later, and Constance had no choice but to place Robert in an adult family home with five other residents; it was either that, or she would have been forced to relinquish her caregiving role because, quite frankly, she ran the risk of dying before Robert.  Once she relocated Robert to a care home, the well-trained staff provided all the assistance Robert needed, and Constance could now have the sole role of being his wife.  She visited him almost daily until the day he died one year later.

Constance admitted that she wished she had moved Robert to the adult family home earlier than she had because she realized that being a committed wife didn’t have to include caregiving that risked her own health.  She relished her reprised role as his loving wife when she visited him – none of the other care staff could fulfill that role but her – and the staff did what they do best, providing all the care her husband needed.

This is the nugget I want you to come away with from my above commentary: guilt and obligation are normal emotions that might prevent you from making decisions that may very well be in your best interests and those of your loved one.  Please believe that allowing someone else to take care of your loved one does not equate to you shirking your familial duties.  It does, however, tell me that you know your limits, and you know what is best for your personal situation in the long run.  Additionally, it shows that you value your long-standing role as a daughter/spouse/partner/sibling, more than any new role as a care provider.  There’s something to be said about retaining your given role in a relationship.

Caveat: as I indicated above, finding affordable care outside of ones home is no easy task, and you may have no choice but to provide the needed care for your loved one.  But if you are able to find trusted family or friends who can “spot” you from time to time so that you can enjoy a needed time of respite, please do so.  You’ll be far more able to carry out your caregiving task if you take care of yourself first.  See my article: Caregiver: put on your oxygen mask first.

The Morning After

The Morning After: Caregivers Experience of Loss and Their Struggle for Identity.

Morning face

(Photo credit: Wikipedia)

Perhaps you read the brief title of my article and before delving into its content you’re wondering: The morning after a night of drinking?  The morning after doing something regretful – perhaps synonymous with the previous question?  The morning after a horrific news event?

None of the above.  In the attached article, a fellow blogger writes about his experience of waking up the day after his wife passed away; a day in which he felt the full impact of the loss of his wife and the cessation of his role as her caregiver – his identity for so many years.

Unless, and until, you experience this type of blurry identity, you can’t fully understand the feeling.  Those of you who devoted any amount of time caring for a loved one prior to their death understand all too well the emptiness and lack of purpose that oftentimes follows the end of the caregiving journey.

I was the long-distance caregiver for my father after he was diagnosed with Alzheimer’s disease.  He lived in a memory care unit of a Southern Oregon continuing care retirement community (CCRC) while I commuted from Seattle by plane, by telephone, and by 24/7 worrying and thinking.  By choice, I left my full-time job and for the next four years, dedicated my time to managing his care and being the primary on-site visitor.  Many of you worked full-time at your “real” job while being a caregiver for a loved one and I respect and honor you for somehow juggling all of those responsibilities.  I knew my limitations, however, and reached that limit quite early in the process.  The emotional and physical toll of caregiving was more than I was capable of handling on top of my other job, so with my husband’s blessing and encouragement, we did without my financial contributions while I carried on as my father’s care person.

After my father’s October 13, 2007 death at the age of 89, I returned to Seattle having spent the last hours of my father’s life at his bedside; then several days wrapping matters up with the funeral home; with the bank trustee, and with the facility in which he had lived for close to thirteen years.  Although there would be many weeks of tying up loose ends upon my return home to the Seattle area, I was effectively unemployed – laid off from a job to which I was extraordinarily committed.  As the blogger in the attached article mentioned – those in this position wake up the day after, and the day after the day after, feeling as though they have lost their purpose.  Additionally, the identity which defined them for several years no longer applies.

Grieving and re-purposing our lives can take place during this time, a process which may take months or years; a process that is as individual and unique as ones fingerprint.  As the blogger wrote in his article, he appears to be transitioning in a way that utilizes his years of being the primary caregiver and advocate for his wife.  He’s recreating his working life; reshaping it to fit the caregiver role in which he flourished.  Like this blogger, I too quite naturally segued into employment positions in which I could continue on the path that I had started years earlier with my father: elder advocacy, Alzheimer’s Association volunteerism, and most recently, putting all of those past and present experiences down on paper in the form of a novel.

But that is not necessarily the norm.  Some of you may have felt the need to totally disassociate from anything remotely related to the caregiving or care managing roles.  I understand that decision and I agree 100% that it’s the right thing for you to do.  Again – how we recover and/or regenerate after the caregiving experience is a distinctive aspect of our ongoing lives.  What we do have in common, however, is that we have all experienced the morning after the end of our caregiving journey.  Whether we’re relieved, angered, aggrieved, or a combination thereof – the morning after is unavoidable.

In closing, I want to celebrate you – the caregiver heroes who are ordinary people, who did the ordinary right thing, at an extraordinary time.  You are a hero to many, and you are a hero to me.

Being a caregiver or being cared for: there’s really no escape hatch.

In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come.  I also talked about caregiver statistics.

One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds.  In actuality, the stats are far greater than that.  Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one.  I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.

The following statement is attributed to former First Lady of the United States, Rosalynn Carter:

There are only four kinds of people in the world – those who have been caregivers,

those who are currently caregivers,

those who will be caregivers, and

those who will need caregivers.

I really don’t think there’s any way around it.  How about you?  Have you dodged the caregiver or being-cared-for bullet yet?