DON'T ACCEPT BEING LONELY - DO SOMETHING
Loneliness is the #1 problem for caregivers. It comes first and stays the longest. You feel alone and entrapped. Many caregivers feel so lonely that they feel their loneliness is suffocating them. They report that no matter what they do, or how hard they try to provide appropriate care for their loved ones, their estrangement from friends and associates and the ever present physical requirements of their medical responsibilities torments them. That torment, that awful feeling of being left alone and that social unfulfilled need, feels suffocating to them. If you feel that way, determine to make a change right now. You don’t have to feel or be lonely.
It Can Be Indescribable – Most caregivers have never experienced anything like their new caregiving responsibilities. They have nothing with which to compare. They find themselves unable to understand or describe what they are feeling. Many are feeling bad for doing something good, and that doesn’t square with their moral sensibilities. Most often, loneliness sets in due to the caregivers’ lack of understanding of what is happening to them. There are answers and solutions to this dilemma, but they have to be sought, and you have little time to do that. If you are frustrated in this dilemma you should find someone to talk with. If you know others with such pain it may be sufficient to provide the understanding they require.
Pete explains how badly he feels and is frustrated about his inability to describe it::
“….My wife had a stroke almost 12 months ago and I just feel lonely all the time. The intimacy has gone from our relationship, before, and since the stroke and I give my wife as much care as I am able to. The loneliness I feel sometimes can’t be described in words. It’s easy for me to say but somewhere in this situation you must take care of you! I now realize, after much advice & soul searching this is very important.”
It Can Be Depressing – Webster’s New World Dictionary describes depression as “low spirits; gloominess; dejection; sadness;…characterized by feelings of hopelessness and inadequacy.” That would perfectly describe the conflicted feelings you may have heard and read about. Loneliness often brings about new feelings caregivers often describe as depression. Although it doesn’t seem like clinical depression, their distressed emotions are real and without any other clarifying explanation. While you may be inclined to re-classify it as loneliness, it could sadden your heart and the net effect is withdrawal and loneliness.
It Can Feel Hopeless – The human spirit needs hope. It needs something to believe in, to hope for, and to have faith in. It is even more critical when an individual is caught in circumstances that seem destined to forever rob that individual of the very things that provide hope. Loneliness can rob stressed individuals of hope. Hope is an enormously constructive emotion. It can sustain an individual through calamitous trials.
A well-known Latter Day Saint leader, Elder Dieter F. Uchtdorf, put perfect light on the challenge to remain hopeful while lonely:
“It is part of our condition as mortal beings to sometimes feel as though we are surrounded by darkness…; we might have received a troubling medical diagnosis; …and be burdened by doubts or fears; or we might feel alone or unloved.” (4).
It Can Be Exasperating - Caregivers suffer through many such exasperating conditions of loneliness. It can lead to hopelessness. Human beings need to feel hope, to look forward to better and happier moments. Believing may be enough until other help arrives.
This woman describes her feelings of loneliness and hopelessness, but still wants to believe:
“Thank you, John. It helps so much just to be heard. I struggle with loneliness more than anything else. Our lives are all about paraplegia, cancer and the worries that come with them. We had plans to enjoy our retirement in 2 years; but now he is retired on disability and I don’t know when I will be able to retire. I feel guilty thinking about how my life has changed when he has lost so much. But holding my unhappiness in is not making me feel better or be a better caregiver. I want to believe that I will be happy again and enjoy life. I want to believe that I have a future. I think that would help me endure this with more grace.”
It Can Be Discouraging – Every mortal who has tried to succeed at anything and failed knows about discouragement. Discouragement and loneliness are familiar partners. Discouragement and encouragement are direct opposites. Only one can be present at any one time. While I don’t discourage easily, I know many people who do. Loneliness is certainly not pleasant, but neither is it terminal. But a conscientious and consistent caregiving effort will often diffuse the problem. Discouragement can lead to loneliness. Even though loneliness can be managed, it still requires believing life can be better, that hope is eternally possible and around the corner of our lives awaits happiness and joy. They can be the reward for believing, and in having faith that the difficulties of caregiving are not the end of life, but the beginning.
It Can Feel Like Being Lost –Patients have no one else to blame, so with anger they blame the caregiver. But what do caregivers do? Do they get angry and lonely? Yes, of course they do, but is it justified? Probably not, but nevertheless it is still frustrating! Often caregivers write about the problems they face without saying they are lonely, but it is obvious they are. Loneliness comes easy when an individual is frustrated, confused or fatigued. Some patients are lonely because of their treatment and circumstances and other caregivers feel lonely because the person they are caring for is nasty, unappreciative and verbally abusive. But despite the obstacles placed before them, it is their collective, emotional health at risk. Even though lonely, deciding to not let the circumstance be a large obstacle is important.
No One Wants To Be Lonely - Loneliness is an enemy to a happy life. No one wants to be lonely. Being lonely is contrary to being happy. Besides loneliness, there are other difficult stresses that need to be managed. Caregivers comment that the caregiving separates the caregivers from their normal lives and the people who are in it. They miss not only the loved one to whom they offer care, whom they may now feel is missing due to illness, but they also miss the other people in their lives. They become lonely. Don’t you be the one to miss the routine, the things and the people you love.
What If You Don’t Get What You Want - What if you work at it, you try hard, and still the difficult in life doesn’t change. Even in those times, you are left with some options. First, you simply must not give up. That isn’t easy. Not receiving a reward for significant work is not easy. But it can be done if you are willing to work at it. Effort and hard work are often at the base of happiness. Don’t let loneliness rob you of happiness.
Take Tom’s example below, he is still working and hoping that joy can return to his marriage relationship. He is a great example:
“….I am also a caregiver to my wife. Chronic fatigue, Fibromyalgia, Parkinsons and hearing impaired. I do all the shopping and cooking and cleaning. Also have a fairly demanding job. I don’t mind the cleaning and cooking etc and I don’t resent her. She is a kind person who was handed a bad hand of cards in life. What eats at me is the loneliness. There is no romance and I gave up trying. It is so different when you are their caretaker, nurse etc, than when you were their sweetheart. I used to try to talk about deep things, feelings and I would hear her snoring. Life happens. I don’t have the answers. I am afraid for me it is just living one day at a time and finding a moment of joy by myself, like a sunset or a good meal when I am shopping. I wish you all well”.
Final Thoughts - There are emotions that can syphon away the energy and hope from valiant and kind caregivers. What can be worse is the reality that loneliness may simply just be the first emotion that spirals downward. Try not to let that downward spiral be you. Don’t accept being lonely. Call someone! Call them just as soon as you dare!