Holiday time usually means the arrival of an unwelcome guest … chronic sorrow. This normal grief response was first identified among the parents of disabled children. I wasn’t happy to hear that mothers seem to experience an increasing frequency of ups and downs.
I’ve written about it before in this blog. Click here to find my former post.
These overwhelming feelings of sadness can visit anyone who experiences an ongoing, living loss … the emotion-filled chasm between “what is” and “what should/could have been.”
The husband of my dearest friend experiences it. My friend, his wife, developed early-onset dementia years ago. I can’t imagine the intensity of what he must be feeling. I miss her every day and recently the loss of the love we shared is particularly poignant. You know how comforting a long-term friendship can be. We were so in tune with each other, we usually understood each other’s feelings without having to name them. It was like being sisters … and we were … spirit sisters.
Because there is no predictable end to the circumstances, this recurring sadness is pervasive and long term. It is not the same as the finality that comes when someone dies. Susan Roos movingly describes it in her book I have as yet not been able to read.
Chronic sorrow … is about living with unremovable loss and unmending wounds. It is about losses requiring – and demanding – energy and persistent courage to cope with crises and making the adaptations necessary to live a life of one’s own. It is about year upon year of living with the inevitability of a loss that continues and of finding a way to achieve some balance between reality and losing one’s grip entirely. ~Susan Roos in the author’s forward to Chronic Sorrow: A Living Loss
For me, it tends to cycle through at this time of year when everywhere happy families are portrayed enjoying Thanksgiving and Christmas together. Even though I know this is not always the reality, my longing for what “could have been” … what is “missing” in my life is profound.
My Shadow Strikes
This unwelcome guest comes and goes but this year, chronic sorrow has moved in with a vengeance. Along with the sorrow, unsettling feelings descend upon me in waves.
- Anger
- Frustration
- Resentment
- Jealousy
- Disappointment
- Fear
- Self-pity
Fortunately I know enough not to act out these dark feelings. I have learned to observe my “shadow self” and keep her in check. But I am unnerved when a wave hits. I try to spare others the worst of me.
Facing a Daunting Reality
As I ponder what could be contributing to its virulence this year, I believe it has something to do with aging.
Because I prefer to be proactive, years ago, as it became increasingly clear that my children could not care for themselves much less care for me, I purchased long-term care insurance with good in-home care benefits. Knowing that has been a comfort.
But, as one who prefers to age consciously, I witness the experience of friends:
- Even with the best of benefits, an advocate is a necessity
- Quality in-home care barely exists – agencies give minimal training and pay minimum wage
- Agencies are focused on their needs, not the needs of those they supposedly care for
- Even the best of retirement homes lack sensitivity to the needs of their residents
As each birthday passes (my 77th in July), these daunting realities come into stark view.
Preparing for the Duration
In mid-August, I consulted with a local retirement village just to see what the possibilities were. I really don’t have a desire to live in that environment, but because I have no family to care for me, I thought it wise to check it out.
However, it will not be possible. My daughter, for whom I am a caregiver, isn’t eligible until she is 65 (she is currently 48) and she won’t have the financial resources.
In addition to my fear of what will happen to my daughter when I am gone, I scared myself with frightening imaginings of how it will be when I am no longer able to care for myself. And so the vengeance with which chronic sorrow hit this year … this cycle … makes sense to me.
By September I started getting estimates on a bathroom renovation. As I write, tile is being applied to my bathroom walls. That huge old whirlpool tub that would be a challenge to navigate as I age is gone. I am preparing to be in my home for the duration … until I make the BIG move.
Gratitude
During the past couple of weeks, I wrote and shared with others about this unwelcome guest. As a result, I’m finding the intensity lessening. When the waves come, I dilute them with reminders of precious friends who listen and empathize and for the comforting power of contemplative writing.
I’m not feeble yet and my daughter’s health continues to be stable. I don’t need to be scaring myself. Maybe it’s time I order Roos’s book and read it. Just maybe it contains strategies I need to achieve some balance … especially this time.
Praying for a Miracle
In the meantime, I carry the memory of the miracle of grace that occurred when I could foresee only disaster awaiting us (the story in my memoir). Perhaps a miracle I can in no way perceive at this time will unfold.
For now, as I did twenty years ago, I wait and prepare as best I can.
Mostly, I feel sad that you have these feelings. If you need someone to talk to, I’m a good listener.
I know holidays can be difficult for so many people. I think of the homeless I feed downtown Middletown that have no home to go to and no family to support them. It’s a sad sad time for so many.
You did listen to me, Prema … Saturday night … and it helped. The intensity is lessening. Writing this piece helped. Thank you for being one of the faithful, empathetic friends who is there for me. I so admire the work you are doing for the homeless in Middletown. My friend, Pam, is doing similar work in Austin, TX. You are an inspiration.
Linda, this is a very thought provoking view. I am sorry for your struggle, especially this year. I feel “chronic sorrow” when I watch my sister battle her body every day due to MS. I have been thinking about how she must feel losing abilities and independence. I have also been sad lately about the limited activities we can still share compared to what we used to do. Thank you for putting a name to this pervasive feeling.
Oh, Joellen, I’m so happy to hear that putting a name to these feelings is a help to you. Of course you would be experiencing chronic sorrow in relationship to your sister. And yes, it must be very difficult for her to lose her abilities and independence … as it is for you to watch this happen to her. It does affect your relationship. Take good care of you in the midst of your caregiving of her. Blessings to you both.
Letting go into that great mystery of the unknown is so difficult. Sending you love, dear friend.
Thank you, Jen … and thanks for being there for me Saturday evening. Means a lot.
Your post is very timely and thoughtful, Linda. The realities of aging are all around us–and your wise conscious planning is one of the best things to get lined up. I hear your deep and raw fears for your daughter. I hope something comes into focus. Other friends have turned to and found really good group homes for their adult children that cannot live independently.
This year, and it occurs more frequently as the years go by, we have a sketchy but pleasant gathering for Thanksgiving with most of the family together, but one group missing and the same for Christmastime. This Thanksgiving, our family in Toronto will be here except for our first grandson who is 22 now. He is recently diagnosed as level 1 autism–high functioning, but not able to tolerate riding in a car. He will be an urban dweller, if he can learn a way to live on his own.Our daughter is figuring out what plans must be made for him if he has to live at home. There have been so many heartaches and delays with him. He is brilliant with mathematics, but…there. The wall.
You are not alone. So many walk this path. Thank you for the reminder about the holidays.
Love, Teresa
Dear Teresa,
I’m so sorry to hear about your grandson’s autism limitations. I recently saw a piece on TV about a tech company who hires people with autism because they are brilliant in some ways that others of us are not. I hope for him that some wise CEO in Toronto becomes conscious of this and paves a way for your grandson to realize his potential.
Alas, for my daughter there is not likely to be a group home. She falls through the cracks. Despite my 22 year search for the cause of my children’s behavior, a diagnosis wasn’t given until she was 28. The cut-off for services for developmentally-delayed individuals is 22. I learned this years ago when I inquired. The person on the other end of the line sounded angry that I was even asking and got off the line asap. This year I tried again when a writer friend gave me the name of a resource. The person said they would look into it and get back with me. I haven’t heard a word from her. She probably couldn’t bring herself to give me the bad news.
A week or so ago I learned of a service in Washington state and Arizona that builds communities for developmentally-disabled adults. They then find compatible roommates who live together and help each other live semi-independently. That would be perfect for my daughter. Should I move?
From what I can gather, my daughter will probably be placed in a nursing home after I’m gone. Not what I would prefer for her but I cannot find another option.
All the best to you and your family this holiday season,
Linda
Linda when I read your blog yesterday i was paralyzed in responding, caught in ‘surviver’s guilt’ as I have healthy children and grandchildren which you lovingly let me brag about. I carried your chronic sorrow and kept asking myself how to respond to that. Last night I had a dream I cannot remember but it ended with the word “per ceive'” pasted across my dream screen just as it would in the dictionary and to the dictionary I went this morning. Merriam Webster defines it as, “to attain awareness or understanding of”. I certainly see you doing that from chronic sorrow to our current political polarity in a way I really admire. You go into those dark places and look around wondering what is there that can help you. Those dark places scare me, it feels like they could swallow me up. You are a brave and courageous soul and many, including me, benefit as you journey, “to attain awareness and understanding”. The world is benefiting from your perceiving!!!!
Dearest Diana,
Oprah says that in all her years of doing her daily show, she learned that all people really want is to be seen and understood. That was my experience as an Imago Relationship Therapist. As I helped couples communicate with each other, as they came to a deeper understanding of their spouse’s and their own reactivity, they both relaxed in each other’s presence. With your response to my blog post, I feel seen and deeply understood. I can’t tell you what a gift that is to me … and it means all the more that it comes from someone who is scared of “those dark places.”
I owe you a debt of gratitude for moving beyond your “survivor’s guilt” to be able to “see” me and “understand” me so deeply. That is a rare experience for me. I always fear that I push people away when I am honest about the darkness … and I feel so dishonest to put on a happy face when inside I am suffering.
Your response means the world to me. Please don’t stop bragging about your exceptional children and grandchildren … they are more than just healthy. I love the ones I know and I love hearing about them.
Thank you for accepting me, for loving me even when I dip into the darkness, for saying that you benefit from my journey. I relax as I take in your extraordinary gifts.
With much love and gratitude,
Linda
Linda, Thank you for having the courage to share, once again, your deepest feelings and experiences on your blog post. I often find that reading others’ comments and your responses to their comments touches me as much as the blog post itself as I see the way your courage and insight benefits the lives of others. The holidays ARE often a painful time for people and I hear how especially painful they can be for you. While the holidays have been a very joyful time for me through the years, they are not as much as they used to be with the loses incurred by aging. However, one of the things I was again reminded of in reading your blog is that the holidays have brought pain for you for a very long time because of your family circumstances. So, for you, there is not just loss around current holidays but loss of memories to enjoy as well, thus deepening the sorrow. Added to that are the complications of aging and knowing that there will not be an end to the situation of caring for Nicole and yourself. It’s very understandable that the holidays trigger your chronic sorrow. Please know that the sharing of your sorrow and loss does not push others away, but, for me at least, it only deepens the connection and endears me to you all the more.
Dear Carol,
Once more I experience being seen, heard, and understood. Thank you so much for this rare gift.
Thankfully I do have happy memories from childhood. My parents did go out of the way to make Christmas special for my brother and me. Often, family or neighbors would join us and that made it even more special.
As an adult with the family I married into and helped to create, Thanksgiving and Christmas became something to endure. For me, there was little joy. I am partly responsible for that. I didn’t stand up to a controlling sister-in-law. I needed a backbone and thankfully, I have a more sturdy one today.
Also, perhaps because of their disease which we didn’t know they had, my children never paid attention to the gifts I selected for them. Even though I listened carefully and purchased what they were asking for, once they got them, they ignored them. I always felt let down. Even today, my daughter shows no interest in decorating or gift-giving and receiving. I’ve learned to accept it but that is part of what contributes to my chronic sorrow.
Thank you again, for giving me your rare gift of understanding. It means more than I am able to express.
Hello Linda – Thanks so much for sharing the information about chronic sorrow, an ongoing issue for many folks. I’m certain the resource list will be helpful to many folks, too. I am reading an extremely helpful book at this time — Only Gone from Your Sight–A Personal Approach to Human Grief and Loss by Kate McGahan LMSW, published in 2018. Thanks so very much for your continuing blog that always seems to state just what I need to hear. Many blessings.
Love,
Carol
Dear Carol,
Glad you found my post on Chronic Sorrow helpful. I’d like to hear more about the book you are reading. I know that Elizabeth Kubler-Ross’s approach doesn’t work for everyone. A friend of mine lost her husband quite suddenly a few years ago. She couldn’t relate to Kubler-Ross’s stages and found something else more helpful. I don’t remember, now, the name of the book she recommended. Have it written down somewhere. And, just to be clear, the grief experienced in Chronic Loss is not the same as the grief experienced when someone dies.
Thank you for your steadfastness with responding to my blog,
Linda
Dear Linda, Thank you for this beautiful post. I am drawn to contemplative writing myself, as I am in my 74th year. Hard to believe it’s possible. My childhood memories of holidays are fraught with fear and pain. My father was verbally abusive and my mother unavailable as she tried to cope with him. My sister and i were estranged for many years and only recently have begun to share our lives again, for which I am grateful. Yes, being seen and heard is what everybody wants and needs, whether we know it or not. My wish for you is a peaceful, loving holiday season with delightful surprises.
Dear Linda,
How nice to make this connection with you … someone who also writes contemplatively. I still lurk on WIP, but rarely have anything to contribute. Families can be so difficult. My mother inflicted her unhappiness on the rest of us and my father was passive aggressive. Everyone loved him because they didn’t see how he was in the family. My brother and only sibling completed suicide in 1995. He became an alcoholic like our grandfather and a gambler and was too proud to get help. I’m grateful I found the 12-step program and a way out of all that. But, at times the sadness lingers. Glad you and your sister are back in each others lives. I’m grateful for the friends who see and hear me … and feel that from you with this comment. Thank you for this treasured gift. I hope you and your sister are able to spend time together this holiday and that you begin to build happy memories together. Thank you for your well wishes for me.
Hi Linda – The book Only Gone from Your Sight–A Personal Approach to Human Grief & Loss — by Kate McGahan LMSW does mention Kubler-Ross — and goes much beyond it – emphasizing that not everyone goes through the obvious ‘stages’ as defined by K-R, and states very clearly that everyone goes through grief in ‘their’ way, not dependent on an obvious structure. Kate McGahan is, for me, both insightful and accepting/supportive of the various and different ways we grieve.
Thank you so much for your posts–I always feel enriched.
Blessings,
Carol