October 31, 2023 by Judith Allen Shone

Loneliness – a side-effect of caregiving

Not long after retirement and following My Love’s diagnosis of COPD, I saw red flags and realized caregiving was in my future. I had to investigate what that role entailed. By two years later when he was diagnosed with Alzheimer’s, I recognized the partnership life I had committed to was unfolding a bit differently than I had envisioned. Over time, I reinvented myself, morphing into his caregiver. My Love’s changing health became the catalyst for all that was yet to come in our lives.

During the long ten years evolving as a caregiver, I felt more isolated and disconnected than at any other time in my life. I struggled to stay involved with friends. But after a bit, we grew distant to those we had known for some time. Not just because we were unavailable for many former activities, or that I couldn’t leave my loved one by himself, but also because we were in our 70s and were aging right along with everything else going on.

I found myself winding down activities that no longer interested me – sadly, that even included some of my friends. At the same time, I noticed that many of our couple-friends vanished early on. I was never quite sure whether it was our inability to be as involved as we had previously been, or whether we all experienced an uncomfortable lack of understanding of memory loss. In the end, it might have been easier to stay with what was known than to tackle a new dynamic with now unpredictable seniors. There was no one reason, but it was sad to watch the dwindling connections and to sense the abandonment and loneliness from those voids.

“A sign we need meaningful social connections.”

As I began reading about the impact of caring for those with memory loss, I related to the loneliness it created for me.

I found that loneliness is “an unpleasant emotional response to perceived isolation.” Emotional isolation….no connections…that was where I was!!

The National Library of Medicine (Perlman and Peplau) “describe loneliness as the gap between a person’s preferred and actual level of social contact, which is a subjective perception.“

On the WellnessEveryDay site, I read that loneliness was “caused by a withdrawal from previous routines, lifestyles, and social activities in order to focus on a family member or other care recipient. Often, caregivers feel like they cannot set aside their caregiving responsibilities to connect with their friends as they used to.”

Caregiver.org asked: “Why is caregiving so lonely?” And responded:

“The lack of social interaction and stimulation from individuals other than their care recipient, especially when cognitive impairment is present, can be an undeniable trigger for loneliness.”

I also found these considerations that resonated with the new less-than-social life I was living.

Q: Had we stopped our usual social activities and routines?
A: Yes

Q: Did I seem to have dropped all other responsibilities outside of caregiving?
A: Unquestionably, yes.

Q: Did anyone see me outside of our home very much?
A: We seldom went anywhere but to the doctor, pharmacy, or grocery store.

Q: Did I complain that health groups established to help families in desperation were unavailable? That other family members were not helping enough?
A: Yes, we needed help. Talked to the health groups who offered help, but got none.  Yes, our families were too far away, and too busy.

Q: Was I always tired or worried?
A: My every other word was exhaustion or overwhelming. It was hard to find solutions when continuously feeling desperate and unheard.

Q: Did I have a chronic health condition such as depression, failing memory, or hearing loss?
A: At 70, my own health was failing, with sleep apnea, imbalance when walking, chronic carpel tunnel, and increasing neuropathy in my hands. Plus, myasthenia gravis was lurking behind it all.

In my reading I found stress issues were at the core of most everything, and that included caregiver loneliness.

Stress issues, which impacted caregivers, mentioned by the Mayo Clinic included:

• Caring for a spouse
• Living with someone who needs care
• Caring for someone who needs constant care
• Feeling alone
• Feeling helpless or depressed
• Having money problems
• Spending many hours caregiving
• Feeling unheard
• Having too little guidance from health care professionals
• Having no choice about being a caregiver
• Not having good coping or problem-solving skills
• Feeling the need to give care at all times

They also noted these red flags, signs of caregiver stress:

• Feeling burdened or worrying all the time
• Feeling tired often
• Sleeping too much or not enough
• Gaining or losing weight
• Becoming easily irked or angry
• Losing interest in activities you used to enjoy
• Feeling sad
• Having frequent headaches or other pains or health problems
• Misusing alcohol or drugs, including prescription medicines
• Missing your own medical appointments

“Addressing loneliness helped me be a better caregiver.”

I saw where I fit into some of these red flags. Definitely, I had had little choice about being a caregiver, but never thought I had any alternative. I had gained seventy pounds over those years, feeling desperate that I might not lose it at my age. I was tired, yes. I seldom got a good night’s rest because I had one ear open listening for when My Love would get up and wander, likely to pee somewhere in the house. I rarely was out with friends anymore. I knew, as a caregiver, I had done nothing wrong to warrant being ignored by the health system, but the. fact was, there was no help coming from the government health department. That was reason for both worry and exasperation.

These things bothered me and I spent time looking for solutions by connecting with the Alzheimer’s Society and Acclaim Health, two local organizations that were known to help caregivers. They were the local ‘rocks’ that allowed me to keep going from the beginning to the end of my journey. My Love had no idea.

We had been social, as a couple, and independently. It was difficult to care for a loved one with Alzheimer’s disease day and night and not feel sequestered, cut off from the outside world. We were almost constantly together, so I was not always alone. But while his life changes and physical transformations did not seem strange to him, my resulting social situational exile made me feel banished and alienated from society. I was living alone with my partner. Even though I had chosen to care for my loved one, I discovered loneliness was an aftermath I never expected. It became a mountain I didn’t know I’d have to climb.

For some time, the desperation mounted. The desolation seemed unending. Family members lived at a distance, even in other countries. Most were fully employed and unavailable to help. I did not want to be perceived as a burden – I did not reach out to anyone. Somehow, the more isolated I felt, the more difficult it was to reach out for help. Although I had no idea what help we needed, or, what was available, I was always telling my sister how exhausted I was. I knew I needed some kind of assistance, but of course, there were many others needing help, too.

Finding the way through – reconnecting.

While researching, I found several sites that had suggestions for dealing with loneliness.
Don’t isolate always seemed the big one – socialize when we can.

• Accept the loneliness.
  Talk to family or a counselor.
• Listen with all the senses, how to do be in your loved one’s reality; converse in their bubble.
• Time online can be a “two-edged sword.” Select the sites that help in your search. Avoid sites that increase fears and stress, or waste your time.
• Lift your energy vibration by asking yourself what you are most grateful for at that moment.
• Be with people who understand, include a bit of social in your weekly life. Whenever possible, look to your local neighborhood or community for activities.
• Volunteer if it is possible. You connect with others when you help them.
• Join an activity group for you and your loved one, or a support group for caregivers.
• Sleep well, eat healthy, get outside into fresh air and become grounded, and exercise.
• Include others in your activities. When others are happy, you are happy.

The main thing always seemed to be to realize how we feel and then find the best strategy to tackle loneliness issues in the same way we do for our loved one’s behaviors.

That old adage ‘that it is never too late’ seemed to apply here. There was still time to get out and start again, to meet new friends, to rediscover a favorite passion. But even so, after so many months and years, I felt numb, a bit unmotivated, especially to get out, or just to tackle learning something…again.

But if I did nothing, nothing would happen…until I made a change. And I did not want loneliness to become depression.

If, when you became a caregiver, you had to give up important responsibilities, or if you gave up meeting with your friends, or playing an instrument, painting, drawing, spending time in nature, or any other activity or interest that you once loved to do, now may be the time to find a way to get it back into your life, how to get involved again It may take time, but that reunion with a past part of you, even for a short time in a day or a week, can put a lilt back in you step and bring a smile back to your lips and help get you back into the world of friendships, out beyond the lonely days.

Social connections, for My Love and me, were our missing links, and so I got us busy reconnecting…it was up to me to avert the oncoming gloom, or even, dare I say depression, and so I pushed us out the door.

There were online resources – they seemed to increase daily. Acclaim Health offered education classes for caregivers. The Alzheimer’s Society had many educators to teach both of us and counselors to guide us. There were planned activities to allow interaction, so we weren’t always alone at home. I took educational classes for caregivers that specifically focused on memory loss and caregiving. I spent afternoons learning caregiving skills plus legal and ethical responsibilities. We learned about the disease spectrum and what could happen. Safety concerns and signs to look for were explained. We collected resources and caregiver tips from other caregivers and from online sources.

My Love and I attended exercise classes, coffee chat groups and, by far our favorite, joined an art therapy group. Eventually, My Love was able to attend an Adult Day Program once a week, giving me a time of respite, to do things for me without having my senses on high alert all the time. Spending time with others who in some ways were associated with memory loss became our new normal and our new social life. Programs at the local Alzheimer Society and Acclaim Health would prove to be helpful. Health organizations in a community can be a God send to a caregiver.

Loneliness crept in and out of my life, but no longer in a serious way. I became grateful for my alone time and learned to use that time for my own mental and physical improvement. In the end, loneliness had been a stranger who entered my life with a frantic emotional surge but became a phenomenon that helped me grow and meet new friends, who then shared mountains of love and encouragement. Loneliness passed through my life as a gift that helped me through the years of caregiving.

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Passage of Loneliness (c) November 2023 Judith Allen Shone

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