Strains of “It’s the Most Wonderful Time of the Year” underscore a commercial on my television—as if I really need to be reminded. Now, I’m not a “Bah! Humbug!” type of person, but these past few years, Christmastime hasn’t been so ho, ho, ho.
As I write this, it’s been three years and nine months to the day since my husband Steve died. I did a lot of anticipatory grieving in the wake of his cancer diagnosis, and despite the fact that there were a couple of “good” years in the five-and-a-half years he was ill, the doctors had made it quite clear that his type of cancer was one that would most assuredly recur. We had been handed a death sentence without a date of execution.
My job as a caregiver was to make his life as joyful, stress-free and simple as possible. When it came to holidays we celebrated with gusto and hosted party after party, even going so far as to create our own occasions to rejoice with our friends. But there were always dark thoughts in my head around the holidays. Is this his last Christmas? Will we be able to celebrate Thanksgiving together next year? What will the New Year bring? Remember, I had been told that his cancer would kill him and though I needed to be bright-eyed and cheerful, I was still living with a ticking time bomb.
But there were always dark thoughts in my head around the holidays. Is this his last Christmas? Will we be able to celebrate Thanksgiving together next year? What will the New Year bring?
I had done a lot of reading—the “what to expect when your loved one dies” type of reading—telling me what I could anticipate a life without him to be like. Books and articles suggested how I would feel, what I would do and even what my friends would do. Life was a blend of reality and hope, and I was, if nothing else, a realist. My own control issues led me to prepare as much as I possibly could, so that surely my transition would be smooth and by-the-book. I never expected that people could grieve by-the-book. Especially me.
No doubt all of my preparation helped me when I needed it, and I encourage anyone going through the grieving process to join a support group, journal about your feelings, and be kind to yourself; but I recognized my life had revolved around this man for more than thirty years and there was a real gaping hole in my life where the man and the caregiving had been. Continuing to get support, to write and to ease up on self-expectation were key, but healing and grieving do not happen in a vacuum, and my friends were very much there for me.
I had a birthday a month after Steve died—I got cards and flowers and was taken to lunch and dinner. I really didn’t want to do anything except sit home and feel sorry for myself, but I was smart enough to drag myself out and be in company. I had been duly warned that the “first year is the hardest.” My datebook was marked with holidays and birthdays and special events, like the day we would be opening my summer house. Oh no—it wouldn’t be WE. Instead, it would be my first summer as a widow. I’m a widow now. I AM A WIDOW. Wherever I went that summer, people would ask where Steve was. I had to be the bearer of sad tidings and comfort them. As for me, I invited friends out to spend weekends to fill the void. They came. The pages of the calendar were being counted as “Steve has been gone for one week,” “…for two weeks,” “…for three,” and so on. The first year he was gone, I made note of the weeks. The occasion of his birthday in August was to be celebrated by a group of his friends from the old neighborhood, but Hurricane Irene put a stop to what would have been a great weekend and we all had a celebratory dinner instead. But when it came to his actual birthday, I was left alone to grieve.
At summer’s end, the Jewish holidays came and friends made sure to include me in their plans the same way they had always included US. Then Thanksgiving rolled around and I was invited to three different dinners. When it came to Chanukah, I lit candles every night, as usual, but gone was the pleasure of having a special gift for my husband every single night—as if he were ten years old. Steve’s parents had never celebrated the holiday and I had been determined to make it special, year after year after year. Then, just like that it was Christmas and friends made sure I had somewhere to go for Christmas Eve and Christmas Day. A week later it was New Year’s Eve and for the first time in a long time—there was no one to kiss when the ball dropped in Times Square. Sure, I was invited by close friends to spend the evening with them—we’d all outgrown raucous parties long ago—but dinner is one thing and that mandatory kiss at the stroke of midnight was another.
So we were into the New Year and the next holiday was Valentine’s Day. I got a few cards from friends trying to cheer me, and their thoughtfulness was appreciated; and just like that, the first year was over. I found myself starting to count the months instead of weeks he was gone. Now things would start to get easier. Right?
Wrong! I began to wonder if I had done something to offend my friends. They had moved on. They weren’t really worried about me any more, because after all, I had gotten through the first year with flying colors. The second year was fast becoming the loneliest year I had ever known. I was determined to build a fulfilling life for myself, but it was exhausting. It would take time; I understood that now. I also knew I needed to be proactive in my new life; I couldn’t expect to wait for others to ask me to join them—I learned to make plans for myself. I never had problems going out to a restaurant alone and that was a big plus. I’d create weekends full of things I wanted to do. When the summer rolled around, it was time for me to make some changes at the house at the beach and if I had company that was fine; if not, that was also fine. Now, I had the feeling that if I’d managed to get through the first year, I’d get through the next year. Each one held its own challenges.
if I’d managed to get through the first year, I’d get through the next year.
When Chanukah came that second year, I made a big party for family and friends. It was a huge success and left me feeling—“Yeah…I am ready do this. I’m ready.” There would, again, be Thanksgiving with family, but this year Christmas was a different story. It was all about the hype and the presents and I really didn’t care if I was part of it or not. When New Year’s Eve reared its ugly head, I had dinner with close friends, lifted a glass of apple cider to toast to our health and happiness and I was content to do so. Then I went home alone.
The third year was much the same as the second and now the fourth has brought me back into the arms of both old and new friends. I think some of them had to deal with Steve’s passing in their way before they could be comfortable with me as a widow. Seeing me get through all of it has helped them.
Lastly, I must talk about how much founding The Caregiver Space has contributed to my sense of self-worth. I finally feel as though I’ve done something truly worthwhile in my life so when one holiday or another is on the agenda, I have the opportunity to write about what it was like for me and hopefully help some of you. For that I thank you more than you could ever imagine.
Just remember that there is a way through what you’re feeling at this time of year and it will keep changing as time goes by. If I can help any of you, you know where to reach me!
I wish you all serenity, joy, good health, and good friends.
Thank you so much Adrienne, for writing about your journey, and your willingness to invest yourself in The Caregiver Space. My husband had Multiple Sclerosis and spent the last ten years of his life in a nursing home. Even though they cared for him, I went to see him daily, and advocated for him constantly. I discovered The Caregiver Space on Facebook a few years ago, and found many of the articles you posted relevant to our situation. They were informative, helpful and encouraging. I hope your ability to help others (as you did me), has helped you in the healing process. I’m now adjusting to the new tag of “Widow” as well in these last nineteen months. As I interact with those in similar situations, or already widowed, I’m sharing your website and Facebook page. Thank you again for all your efforts. You’ve made a difference for me. I wish you all the best.
I see this post is 5 years old but my first time reading it. Thank you for sharing this again. My husband passed away 2 years, 9 months ago. I did not even begin the grieving process until 6 months after he passed. Heavy caregiving for 3 years prior and I was just exhausted. After 6 months, I just stayed in bed for 2, then started to recharge. The process is different for everyone, but that hole after 25 years together is real, and as the years go by my adjustments are similar to yours. I have always been comfortable being home alone, and I do force myself to go out and be among friends. I was also a 24/7 caregiver for my mother for after her stroke for the first several moths until I hired help for the next 5 years.
I’m not sure I will ever get over this feeling of having been so exhausted that nothing mattered. Now I am just content.
Adrienne, my mother has Alzheimer’s/dementia and I have recently had to put her into nursing home care for medical issues beyond my ability to handle. I lived with mom for the past 12 years. People said I would be relieved when she was in the nursing home, that I would enjoy her company more! I quit work 5 years ago to care for mom full time….I miss my mom. I miss caring for her, seeing her, laughing with her. It is not the same being with mom there as it was at home. I go see her often but quit going everyday. My sister said I am experiencing anticipatory grief and I just can’t get it together yet. Mom is still alive, but does not know me by name anymore. It’s only been 6 months since she was placed in the nursing home. I have noticed small improvements in myself like not sobbing in the car when I have to leave her. Looking forward to blogging my journey soon, hoping that telling our story will help.
But do I still look forward to the same level of grieving at her death as I am experiencing now? Not sure I can do this again. Thanks for your willingness to share!
Jodie Marie –
You are going through a lot! I’m not allowed to give you legal advice (and I’m not a lawyer), so the best advice I have for you is to contact social services and see if you can be assigned a social worker to advocate on your behalf. None of it seems fair, especially when you say your siblings are living comfortably.
Too often, caregiving falls to one child in the family…usually a daughter…and everyone seems to forget the work that’s been done for them when the caregiving is over. Sad but true. You do have your kids and grandson to be thankful for. Hopefully they’ll bring you some joy.
We’ll be online Thanksgiving Day doing some chats. Maybe you can join us. On the right hand side of your screen there is a yellow tab – click it and follow it to the Thanksgiving Chat room. Maybe some of the other people on line will be able to give you some ideas.
Hugs…Adrienne
I am so inspired by the stories I have read and the cries for help as I’m also in crises brain fogged and have 4 of loving siblings evicting me from the home I was born. Yes court at 1pm tomorrow and already threatened by the sheriff planning to physically remove me. I moved home from Texas in Oct of 2006, after listening to my sweet mom tell how lonely she was. She had fallen earlier that year and cracked ribs so she laid on the couch for many months. My sibling 3 within a 2 mole radius 2 only a few blocks away to busy with there own lives. My eldest sister struggling to keep the doors of her restaurant open and still doing the same turns 74 in February, came three to four days a week for a cup of coffee and oatmeal cookies and another on Saturdays to mow and care for the lawn and outside of coarse mom didn’t get to visit with them even when they did come. I cared for mom for almost six years her first back surgery just a couple month after the long move back home. Thus time alone my husband took his life in 2004 and left me with two angry teens my house to be repossessed just a nightmare of bipolar addiction, and pain management from Dr to Dr and over 30 jobs in the years since we moved down here as dislocated timber workers. He was sent to lineman school in Idaho and got an apprenticeship. Then fell and then fell again a friend burned and certain to die. He quit and tried numerous other jobs and just couldn’t find his nitch,. I on the other hand had two jobs and was making close to 50k a year more than I thought I would ever make. I care for mom mostly bedridden to the point of treating bedsores wet bathes couldn’t lift her to the potty chair or in the shower any longer no the last year was a nightmare feeding with a syringe and told my kids and iI could have the house appraised at 54k not much for giving 6 years. The signed and notarized document disappeared into my eldest sisters hand and the one hour consultation given to me by the local Sr a center was off as he already represented others in my family. Her home health nurses were the witnesses and the assistant County Clerk came from the courthouse two blocks away to notarize the document. Small town? I recorded the document that made me her power if attorney and just wanted a consultation on the trust deed that I have never been able to get back from the attorney. I am in disability myself now my only income. My brother now76 has bet at the bull table in my sisters restaurant that he can have my ass drug from the home. Now they are calling me a tenant? I own just asmuch as they do and earned this ole house I had tenants in the apartment upstairs that were assisted by the senior center also that pd one month and then senior center paid one month then nothing For the next 4 months property taxes were due August 15th or they started forclosure I had sold property one year and managed to pay it the just gave my whole months income another and this year thought iI would be fine with paying tenants but that backfired Also. I am in a fig the house is a mess I can hardly get around and now my Dr took my Hydrocodone and put on a Fentynol patch that is just not working bit nothing can b done she come once a month from Bend 132 miles away so I just sit here and cry and tremble. I will turn 54 in December, the baby and. 14 years young than the next sibling. Five in all who are all comfortable with homes and I have only my kids a grandson and another on the way. How do I move with what and why can’t they just leave me alone when mom was still here in hospital bed in this living they hugged and thanked me and now I’m down and they r evicting me they were all told to let me retain the house. I would have got the money someway.. I just have no idea what to say at court tomorrow, I’m terrified. Mom didn’t qualify for the care homes here she would have to be taken to Portland OR Vancouver and placed. She begged me and the others to not put her in one those homes adding when you want me to die. She was totally dependent on me for diaper changes catheter care everything every bite. I loved her more than words. I wish her and could be here for this my brother no can’t offer to help me he paid the 3rd year tax just over $1000 dollars. And now he’s my landlord if only I was paid for moms care according to them I owe all 5 of them and they will put me in the street without a thought. I very prepare him Thanksgiving dinners, Christmas dinners and never once has he and his wife in my 54 years had us over for any dinner ever. I don’t know what to do, they are so greedy. I gave my oldest sister one property when the business she sold me failed. I. Have nothing left
Your situation is unconscionable…..please let us know any update…. 🙁
I lost my 43 year old husband almost 6 years ago from cancer, (I was 45). he had two rare blood diseases before then that led to cancer. One was genetic, and he could pass it down, so we decided not to have kids, and he was too sick for us to even adopt. I never held a full time job outside the home because taking care of him was really my full time job for over 18 years. I held part time jobs playing the piano for several places. I went back to school about a year before he died, and got a degree in Music Therapy. I graduated in 2013. In 2012, my Mother began having major health issues, COPD being one. She was in her late 80’s, and I became her full time caregiver for 2 years. I have taken the Board 4 times to be a Board Certified Music Therapist but have failed it 4 times. Without it, I cannot get a good paying job with benefits. The only other thing I know how to do is caregiving, and have applied to agencies to care for seniors in their homes. I am trying to get a business off the ground to do music in nursing homes, assisted living facilities, etc. but I am drowning financially, to the point that I may lose my home, which would kill me. I cannot find a full time job and this business is taking forever to get off the ground. I miss my husband and my Mom. They were my life for most of my life. I have had major anxiety and depression and bills are piling up including a hefty student loan bill. I’ve prayed, I’ve had personal and grief counseling, I’ve done all the things I know to do. Nothing is helping.
Betsy –
It sounds like you are not only a genuinely caring person, but resourceful and creative as well. You’re trying and that counts. Is there any way you can find out how or why you didn’t pass the Board exams? You might be able to take them again with feedback on what you need to study up on.
That said, I think the idea of a business bringing music to assisted living facilities is wonderful. Have you contacted a social worker through public services who might help you out when it comes to your home? There are ways to have people advocate on your behalf and have credit card debt payment schedules drawn up and schedules for home financing as well that are more fair than what you might be facing.
Every state has different laws and benefits, and doing it all on your own doesn’t seem like it’s working. Try and get some free professional help from legal aid. You need constructive, informed advice.
You’re doing all the things you need to do. Keep moving forward and trying.
We’re having some group chats on Thanksgiving eve. If you get online and check the Community Chat tab off to the right side of your screen, see if we’re on and join us. Some of the other people in the mix might have some ideas.
Hugs…Adrienne
Hang in there, Betsy…I hope things are better now!
My husband passed away January 17th this year from cancer. He was diagnosed December 26, 2013. I have always been a strong, capable woman, but now I feel so lost and in a fog. I have no desire to do anything, even my housework. I have never been so down that I can’t function. I have no motivation. How do I get out of this funk?
Sandra, I’m so sorry to hear about your loss. We have a bereavement chat on Thursday nights if you’d like to talk to other people who understand. Bob, the moderator, is a wonderful person who was distraught to lose the love of his life. You can also find support on our forums.
Sandra –
It’s been 3 years and 11 months since my husband Steve passed away (but who’s counting?). He’d been diagnosed with lung cancer six years earlier and as prepared as I was certain I was for his death, I’m still grieving.
During the last year of his illness, I conceived of this website, and it has been a big part of keeping me going, but it also keeps his loss very fresh since I’m always being asked to discuss it. For me, keeping in touch with others who have experienced loss after periods of caregiving has been an important part of my “recovery” process. I put recovery in quotes because despite the fact that much of The Caregiver Space has been based on 12 Step program principles, I don’t think losing a spouse is something you ever fully recover from.
That being said—your loss is too fresh to begin to be concerned about being down, or not functioning or having no motivation. You’re human. I’d like to echo Cori’s suggestion that you join in the bereavement chats we have on the site. There are an awful lot of us who cared deeply and life after caring is extremely difficult. I myself found discussion boards on some cancer specific sites that had “life after caregiving” categories and depending on where you live, there is a wonderful organization, Friends in Deed, that has face to face groups to deal with grieving.
Above all…do not feel guilty for grieving; for not being your old self. Be kind to yourself. Try and get out of the house if just for a walk around the block. No one is asking you to take yourself to dinner and a movie yet…that will come in time…but just a little movement every day will help get you on your way.
Please feel free to contact me personally at adrienne@thecaregiverspace.org. I’ll be happy to address some of your issues. And go to our Forums on the site and post in the Bereavement topic. See what some of our other caregivers have to say that might help.
Wishing you much courage and sending you hugs, Adrienne
I feel so badly for you, Miss Sandra! This post is close to 2 years old, so I am hoping and praying that you are feeling a little better now… 🙁
thank you
My husband passed away July 11 after a five-year battle with cancer. We were married 41 years. I’ve done well up till now, working and taking care of details and putting the house back in order but the holidays are a real challenge. I have three lovely daughters and their families to support me and we spend a good deal of time together. With all that, I am still feeling very fragile over the holidays.