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One Caregiver's Holiday Story

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My kids, as they grew up, were fortunate to have their grandparents nearby. Along with memories of fun-loving grandparents from their early childhood, however, they remember the surgically induced dementia of one beloved grandfather. They remember the strokes of another. They remember the divided holidays, as we shuttled back and forth between the nursing home, for those we couldn't transport, and our house, for those who could come to the house. Unfortunately, I'm sure they also remember their mother's frantic struggle to meet the expectations of every generation, with only limited success.

Right after Thanksgiving, each year, I would decorate my mother's apartment – Dad was by then in the nursing home. After Mom joined him in the same nursing home (different private room) I would decorate her room, my dad's room and my mother-in-law's room. Then, of course, I'd decorate our home. Then the planning would start as to how to handle all the generations, meeting everyone's expectations for the holidays.

The guilt about taking so much time from the kids ate at me. The guilt about my mother not having the Christmas celebration she so coveted, ate at me.  My mother-in-law seemed not to care, yet I knew underneath the dementia, she did. The frustration of trying to "celebrate" the holidays when my dad no longer knew what we were trying to do, made me want to throw in the towel. Yet, to ignore the holidays seemed wrong. So onward I marched, trying to make the holidays sing for people who couldn't hear.

The squeeze of generations, and the far reaching needs of each, can leave little time for the caregiver to think of his or her own needs. Indeed, it seems as if trying to find time away from the logistics of the season – time to sit quietly and feel what we, the caregivers need – is just another task. So, we smash down our feelings, and keep on doing. We keep directing the orchestra. A little more brass here. A little more percussion there. Arrange the holiday song so everyone has a part and everyone finds it pleasing.

Unfortunately, the maestro is on the verge of collapse. It takes energy to plaster on a smile and say "Happy Holidays," as people in the grocery store greet you. It takes energy to say, "Yes, I got all the rooms at the nursing home decorated with their favorite holiday items and it looks great!" (Smile. Keep smiling). Then, when you have a moment, you sit back and realize you don't feel like smiling. You realize that no one got enough of your time. The elders feel like you didn't spend enough time with them (or they forgot you were there at all). The kids wanted you at home for the day, but you had to run to the nursing home – yes you had to. The elders deserved that.

So, the maestro failed at perfection. All of that energy directed toward creating a perfect holiday didn't produce the perfect results for everyone. Therefore, in your mind, you failed. Guilt swallows you, the caregiver, whole. You can do that. Or, you can drop the fantasy of perfection and lose the guilt.

 
Read more about: sandwich generation
 

Comments

 
  •  Comments 1 to 10 of 25 
 
 

DWYC

Give a Hug

Nov 23, 2007

Thank you so much for this absolutely stellar article by Carol Bradley Bursack. I care for my adult child with CP, Seizures, and severe MR in my own home. On Thanksgiving day I went to Carol’s own blog and was led to your site to read the article. I identified completely, and was very uplifted with this honest but hopeful Holiday perspective. What a boost for caregivers such as myself or any others in this modern, fast moving world who value humanity over glitter. I’ve never met Carol, but have followed her columns, blog, and have read her wonderful book. She is a gifted writer and more so, as in this article, she shares deeply personal experiences which indirectly reveal her life of giving to others, she is certainly (in my book) right up there with any other domestic living hero. I am writing to thank you for the column, and also because I really think this article and her work in general needs to be much more widely shared. I’m going to try to get the interest of national network news companies. I couldn’t find direct e-mail addresses to forward this article and wonder if you would have any thoughts on this?
Thank you very much.

 
 

Publisher

Give a Hug

Nov 26, 2007

We at Agingcare.com also think very highly of Carol Bursack's knowledge and writing skills. She does an incredible job of bringing the issues to life and demonstrating a deep understanding of caregiving. Kudos to Carol for such a wonderful article.

Though we do not have the direct email addresses of specific contacts you are seeking, I would suggest contacting the editors of these news outlets by phone. Generally speaking you can call headquarters and find out where this information can be sent.


 
 

Wow! I am humbled.
Carol

 
 

195Austin

Give a Hug

Sep 2, 2008

I am so glad I will have this site this comming holiday season the last two holiday seasons or maybe even three my husband has been in rehab and it was a relief not to have to deal with all the comerialization of the holidays but spent a lot of time with my church family. One thing I plan on doing this year is to do less shopping and when possible instead of wrapping gifts I plan to put gifts in the cloth bags you buy in the food stores, and I hope the other caregivers will share their shortcuts. The one thing this year I will do if alone-due to the husbands treatment of me and the kids being busy with their spouses and children I will make plans even if it is going to Burger King and not sit alone and feel sorry for myself. This site is the best gift a caregiver can receive any day of the year-so matter what I will not be alone this holiday season

 
 

serenity81

Give a Hug

Nov 21, 2008

I'm so glad i found this sight. I'm dreading the up coming Holidays My father has Damita and lives in assistant living however he still remembers enough that he knows what is going on but not really so we are going to my sister house for dinner that's were he lived up until last year he always want to go back there and he CAN'T BUT it just make s the holidays very hard.

 
 

Maureen

Give a Hug

Nov 23, 2008

October 2007 my mother came to visit and never left. Being with her 24/7 made it crystal clear that alone was no longer an option. She has been on Aricept and then later Namenda was added.......so we have seen the progression of this dementia..............she was incredibly good at covering for the lapses that SHE seemed to know she had.
Getting through the Holidays was an eaker last year due to all that we had taken on, learning, illness, etc. This year I started early and thank God for internet shopping, because I have not been out once! What gets done, gets done. I want to focus on the Little Ones in my life, and that is OUR, Mother's and my, repeated commitment.......I truly think from time to time I see a glimpse of a more selfless past from Mom......mostly not the case anymore.
I can actually enjoy much of the preparation this year, not ALL, but more than last year.
Maybe some of the grieving is over, certainly no more sleep, the tears still run at times, but the smiles are more frequent ,too. Mom does accept that her memory is gone, less of the arguing...and I still have trouble moving slowly enough, my normal way of moving seems a rush to her, and we all know that that upsets the apple cart!
Blessings and Grace for all of us during this season of stess as we try to make a special time for our loved one, maybe for the last time. Who knows, with dementia as apart of our lives, we may learn not to wait until we are old to CHERISH our memories, save things "for good", wear more jewelry now!
God Bless to all
Maureen

 
 

BetsyC

Give a Hug

Nov 23, 2008

One of the best things I have ever done for my own mental health is to read "Happiness is an Inside Job" by John Powell. He has much to say about self-acceptance which is primary for one's happiness and he totally changed my outlook by helping me to realize that not only can I not "make" anyone else happy, it's not even my job! Even better is the realization that no one else can "make" me happy. Or unhappy. Or angry or sad. I am happy in and of my own self and am confident in knowing that I am doing my very best to care for myself and my mother. What others think may or may not be of interest to me but it does not affect how I feel. That power is completely in my own hands and I refuse to let anyone else have any of it. I plan to enjoy the heck out of the holidays. Sweet!

Betsy C

 
 

I agree wholeheartedly with Ms. Bursack's holiday message. One year at Christmas, the very best thing I did for myself that year was to uninvite relatives who had invited themselves over to my home for Christmas and politely decline a Christmas party social event of the season. No amount of manipulation from friends and relatives worked on me as I did not accept it. Guilt and manipulation have to be accepted. I enjoyed a quiet Christmas and end-of-year that year, entirely relaxed, and did not buy a single Christmas gift that year. The world did not come to an end; and I felt entirely refreshed and renewed in the new year. Life goes on. Guilt is not healthy when one has done nothing wrong. Mental health and physical wellbeing and comfort are very important. Holidays can be loaded with shoulds and ought to's that are guilt inducers for some individuals who allow themselves to be sucked into the marketing hype and social manipulation.

 
 

PCVS

Give a Hug

Dec 10, 2008

As an artist working in both fine art media and art jewelry selling online and at homes, I offer clients a hassle-free, stress relieving way to purchase gifts that they don't have to wrap or send themselves. And because I am so computer literate, I can do a lot of purchasing myself online (for those gifts that I don't make myself).

I am also lucky that when things get so overwhelming that I can't function I can call my sister-in-law and she will help. Today, for example, I had an appointment to meet with a client who had commissioned a bola tie for her father. At the same time was my mother's appointment with her internest (ist?). My sister-in-law offered to take her so I could meet with my client.

My problem is that I think I don't ask for help as much as I should. But as for the holidays, well, there are eight nights of Chanuka and I'm sure at least one of them will include making latkes here.

 
 

kycady

Give a Hug

Dec 10, 2008

Great article. Much of my time is on the computer creating my art as a Photo Illustrator... while caring for my father (Alzhmeirer's;Cancer)... and all I see are the "Norman Rockwell" moments or commercials on buying gifts and eating with a "happy family". I think Carol is absolutely right... I'm one of those who wish I had a family like that... raised by my grandparents... we always had a Christmas but with the usual drama & dysfunctional activities... never "Norman Rockwell" but always with love. I have tried to make my own White Christmas as I aged because I missed it so much & then attended a few Christmas' with my ex - his family was much closer to the Rockwell's and I miss that - but, now, he too is no longer celebrating quite like they used to... he is a caretaker for his mother (86) who is very demanding and physically very fragile.

My world is sometimes just "blah" and I like happiness! I don't shop much... but, my father did (I was estranged from him most of my life & although resentment was fierce at first when I took on his care (and the rest of his family looked on with no aid), I now am glad he's my "friend"... my birthfather... my grandfather was my "father" & I watched him in the Nursing Homes at a very young age (23) after a stroke...

In any case, I ramble, thank you Carol for helping to make me feel a part of the Holiday...not a freak that is totally out of it & unincluded in the festivities. I welcome your next article & will visit your website!

 
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