Ghosts of Christmas Past "“ and 4 Other Top Caregiver Challenges

Last updated: December 21, 2010
unmerry Xmas Nik

Writing's Self Caring blog lets me peek right into the heads and hearts of caregivers. What I see: That we can't talk enough about the personal side of caregiving! That's probably because caregivers' lives are sooooo deeply affected by the role, and yet that part of the equation still goes mostly unacknowledged.

Looking back on the past year's posts, the following five themes seemed to strike the biggest chords -"“ starting with one you may be grappling with right now:

Challenge 1: It's hard to stay present in the present!

We hear a lot about mindfulness as a panacea for stress: Being in the moment, being present. It's a lifesaving way to cope, but it's also doggone hard.

Especially during the holiday season, it's hard to resist the impulse to look back on bygone celebrations and recall differently those who have diminished physically or mentally, or who have died. These "ghosts of Christmas past" can crowd out just "being" in the moment.

And when we're not looking back, we're worrying about what's ahead. It's so easy to ruminate over the what-ifs and what-nexts without so much as noticing the little grace notes of the falling snow, the peaceful carol, your loved one's very presence.

Challenge 2: It's an emotional minefield out there.

Chief Justice Sandra Day O'Connor told me [sadness] was the emotion she found the hardest part of caring for her husband. Gail Sheehy answered, "powerlessness." The posts that got us all talking the most dealt with the complicated feelings caregiving brings "“ and there's no shortage of them. Resentment, worry, fear, guilt, anger"¦it's all a toxic sludge in the heart.

What helps you? Music? Journaling?Exercise? Fantasy? It's all good but it's never enough, is it?

Challenge 3: Happiness is especially tricky.

Most of the emotions listed above exist in direct response to other people. Happiness is a bit more within our own control. And that can make pursuing it a burden, even as we know it will make us feel better. We lack time for what makes us happy, lack vision or incentive for it "“ or feel guilty when we gain glimmers of it.

One member, a 70-year-old dementia spousal caregiver called ponderosa, shared that he woke up realizing he'd never be happy again; by the end of the post decided it was time for an attitude adjustment. "Thanks for the encouragements I see in blogs like this along with the responses," he wrote. Here's wishing everyone some happy days amidst the inevitable sad ones.

Challenge 4: The stressors are real "“- so real.

Everybody in modern times thinks they're stressed. But deadlines and overpacked schedules are nothing compared to the relentlessness of caregiver stress, especially the Alzheimer's caregiver. Money tightens. Grief shadows everything. Cures are elusive. One's own health is affected by lifting, sleep deprivation, social isolation, no free time to exercise. Well, I don't have to give a list. You know.

Challenge 5: We can't help feeling alone.

Even though the numbers point to massive numbers of caregivers "“- bound to increase as Baby Boomers starts turning 65 on January 1 "“- when it's happening to you, it feels new and strange at first, and therefore isolating. It can be hard to tell friends what's up. Or you may not know where to turn "“- uncertainty breeds isolation, too. And then just plain doing it, being a caregiver, tends to shrink your social world to the size of a snow globe.

That old saying that it takes a village to raise a child? I think it's a fair assessment (and not an infantilizing or belittling one) to say it takes a village to care for our elders, too. A village full of members both real and virtual, all with the same aims, and needs.

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8 Comments So Far. Add Your Wisdom.

almost 4 years ago

I am so glad to read that other people have felt the guilt about did I do enough and all the rest that you can load yourself down with. My Mom told me so often thank you and she would tell everyone that I was spoiling her rotten. We did do the best and all that we could for her. This Christmas was so hard because it was her favorite holiday. She always got so excited. We all started talking about her and the funny things she would say and do and how much love she gave to us and it seem to bring her here with us . We all felt she was closer. It is so so hard to lose someone that is so dear to us. I am glad that we can all stick together

almost 4 years ago

Excellent, loving comments; thank you.

almost 4 years ago

To: jaczyns1 My sincere condolences to you also. Regarding your statement , "Since her death I have struggled with guilt (did I do enough for her, WHY did I get angry/frustrated with her/why did I say/do the things I did....) " you are NOT alone. I believe most caregivers fell this way, and I believe most have gotten angry/frustrated and said things we deeply regretted....we are HUMAN, not machines and that is what we were like machines that went 24/7 dealing with more than most people could handle. when I would get frustrated and complain, I would walk back up to my mom and apologize for snapping, and she was so sweet, either the dementia did not allow her to remember, or she was being my sweet dear mom ( I believe that was the case) she would reply to me with a smile; "you didn't yell at me, and if you did than I deserved it." That made me feel worse, but then that "moment" was over. What I believe is that we get angry at the "disease".....NOT our loved one....I am SURE OF THAT. So please don;t beat yourself up, I know I have done the same thing to myself. Listen......we will NEVER be able to say, "we should have" becuase we DID, we WERE THERE FOR THEM....through the whole journey. Yes I am broken hearted and I do not believe I will ever feel better, and Christmas will always be sad for me. Take care of yourself. thank you for having the courage to say what I think a lot of people are afraid to admit to, that we do lose our tempers a little, it's always just for a moment, but we snap. God has a plan; we can't change it; we don't always understand it, but we have faith and accept. It still hurts though.... A LOT. God Bless you too, thank you for your kind words.

almost 4 years ago

This is my first Christmas without my mom [who died in February] and the pain and sadness is overwhelming. I know how everyone warns you about all the "firsts" (first birthday, first mother's day, first holidays) and while the pain was there for all of those firsts, this FIRST CHRISTMAS has knocked me against the wall. The only one who understands is my friends say "we're thinking about your" but no one has come out and said -- let's talk about how this Christmas is going to be difficult for you. Everyone thinks I should be "over it" about now...UGH! Dorothy's Daughter, you have my deepest sympathy on the loss of your beloved mother and I will keep you and your husband and your mom in my prayers at Midnight Mass tonight. Like you, my mom lived with my husband and me for the last 9 years and what a joyful time we all had together (both my husband and I are only children and my dad died when I was 26 and his parents are both deceased) so my husband, my mom and I became the "Three Musketeers." Like you, we had so many wonderful times together, dinners and movies, shopping trips, vacations...My mom had a stroke in May of 2009 and rapidly declined. My living room became her bedroom and my husband and I took care of her until she died in February. Since her death I have struggled with guilt (did I do enough for her, WHY did I get angry/frustrated with her/why did I say/do the things I did....) and the pain (my mother/my BEST FRIEND is gone and my heart is broken) and the loneliness (I feel very isolated from everyone but my husband). He and I talk about my mom every day and keep her memory alive by remembering all the (many) good times we shared, or he will say something to me that she would say and we share in remembering all the joy and (so much) love she gave us. I know in my heart I will NEVER get over this loss and I believe that you won't, either. My only suggestion to you is to pray, pray, and PRAY some more -- God IS good and kind and merciful and prayer WILL help you in your grief journey. I feel like we are kindrid spirits, you and I, and my heart goes out to you. God bless you and keep you in his loving embrace.

almost 4 years ago

Thank you, it is just so hard to think I will get over this, I know in my mind that time will ease the hurt, but in my heart, I will never get over losing my mom, there is nothing like a mother's love. God blessed me and my husband with my mom, although it was difficult at times and stressful, having her live with us, instead of a strange home some place, was the BEST thing we ever did. On Dec 11 God gave us a special gift, mom was very lucid that day and said, "thank you for helping me through this", "I know this has been very hard on both of you", "thank you for not throwing me away like garbage", and finally "I am going to miss you very much" much as it tore me apart and reduced me to tears, as it does eachtime I think about it, it just proves....they are STILL IN THERE, they just can't always express themselves. My mom developed vascular dementia in 2007, She moved in with us in May 2005 due to health issues, so, we had some very good times with her, before the dementia started stealing her from me. I thank God for that too. I learned a lot about myself and a lot about others through this journey. Some people have no clue and never will....I feel sorry for them. My days are a roller coaster, some moments I am composed and a LOT of HOURS I am a total wreck, but that is because I love my mom so much and miss her so very much,

almost 4 years ago

So sorry for your loss!! Please don't make Christmas a sad time for yourself and your family forever. My father in law lived with us for five years and also passed about 4 years ago on Christmas Eve at 88. But we celebrate it as "another year in heaven for him" It doesn't always work but instead of remembering when he died we TRY to remember him on his birthday, father's day etc. Many hugs to you and yours will be thinking of you Dorothy's Daughter

almost 4 years ago

I am so sorry for the loss of your Mom. My Mom passed in March and I still miss her so much. She had these bells that she always hung at Christmas time I have them hung up now and I am hoping that she will find a way to ring them to let me know she is still with me.It does get easier as time passes but missing her will never stop. My prayers are with you

almost 4 years ago

My Mom just passed yesterday 12/21/10 @ 2:32AM I was her 24/7 caregiver for 5 years 7 months. It was a rough road at times, but I would do anything to have her back and still be caring for her. I miss her so very much. I had hoped that she would at least make it to her 85TH birthday in February, but she didn't even make it to Christmas. Now Christmas will be the saddest time of the year for me....forever......

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