My Life After Caregiving

My experience so far after the "long goodbye"


If you’re a family caregiver, you already know how inconceivably tough it is. In my case, caring for my mother and surviving the three-year “long goodbye” after her Alzheimer’s diagnosis was nothing short of brutal. As tough as it was much of the time, the seven months since her death have meant a new set of challenges.

As rife with emotion as caregiving was, life after caregiving has also evoked the gamut of emotions – from relief to sadness and guilt to catharsis. Like any grieving process, mine is unique and highly personal, and I can only tell you what my own experience has been. Still, I suspect that a lot of the things I’ve experienced post-caregiving will resonate with many former caregivers who are picking up the pieces after losing a loved one.

Relief

Just after Mom passed away, I felt a powerful sense of release. In the three years leading up to her death, I watched, powerless, as Alzheimer’s warped the vital, active, caring woman I’d always known into a complete stranger. What started as seemingly harmless forgetfulness morphed into a brutal reality that included an inability to recognize the people closest to her or to care for herself, along with occasional threats and violent outbursts.

As much as I loved the mother I’d known before “the long goodbye,” she was already long gone. I couldn’t help but feel relieved to say a final farewell to the stranger she had become. And I was thankful that she no longer had to live with the weight of this disease bearing down on her. We’d both been beaten down and exhausted, but now the nightmare was over, for both of us.

Reflection

Since my mother passed away, I’ve had time to process what happened over the past three years as her caregiver.

In the first few weeks after her death, I felt like I just needed to be quiet, calm and alone with my thoughts. Being her caregiver had become a large part of my identity, and I needed some time to figure out who I was now without that role to fill.

For anyone who’s going through this process, it’s so important to communicate with your loved ones that you just need a little time and space to process things. Be upfront and let them know that you may need a few days or a few months, and that they should not take it personally.

Sadness, Loneliness and Guilt

Though I’m relieved that Mom’s battle with Alzheimer’s is over, that doesn’t take away from the sadness of losing her. My mother was a wonderful part of my life and my best friend, and that’s something I can never re-capture.

Sometimes I feel a profound loneliness without her. A mother’s death leaves an empty spot in your heart, no matter how surrounded you are with wonderful people. Plus, as my sole remaining parent, I officially became an orphan once she died – a difficult thing to accept at any age.

And more than seven months after her death, the guilt that plagued me as a caregiver hasn’t magically gone away. I’ve done a lot of second-guessing about the decisions I made. I still feel guilty about not letting her live with me, even though logically I know our home wouldn’t have been a safe environment for her – it’s not easy to navigate with a wheelchair or walker. Even with that knowledge, I’ll always be sad that she didn’t live with us in her final years.

One lesson I’ve learned – just cry. It’s the body’s all-natural way of releasing overwhelming emotions, and it’s a perfectly healthy way to grieve and recover.

Finding Support

The need for a strong support network doesn’t end once caregiving does. In my case, my Facebook community, which helped me through the ups and downs of caregiving, is still an important source of support after my mom’s passing.

As a strong, independent person, it never dawned on me when I started caring for my mother that I might need anything resembling a support group to get through the tougher moments. But after months of posting about Mom’s Alzheimer’s and seeing the encouraging responses from followers, I came to realize that I’d inadvertently created my own support group.

I wish I’d known about the Support Groups available on Caring – there are some unbelievably helpful, close-knit groups on these forums with answers to questions you might never think to ask. Both during and after caregiving, it’s crucial to reach out and find that support – whether from an online community or from close friends. Time to be by yourself and reflect is important, but at some point you’re going to need someone to lean on.

Regaining Time and Money

For a lot of caregivers, it can be a bit jarring to realize just how much time of your time you used to spend caring for your loved one after they’re gone. On one hand, having all of that time back to focus on friends and family, your career, travel or hobbies is a gift. At the same time, the sudden shift in your schedule and identity can be overwhelming.

After Mom passed away, I was suddenly presented with several hours each day to do whatever I chose. At first, I could barely remember what I used to spend my time doing before caregiving. As time has passed, it’s even harder to grasp how I managed to juggle family and career while caring for Mom. Looking back, I’m proud that I was able to spend so much time caring for her while taking care of other business.

In addition to more hours in the day, post-caregiving life for me means a little more money in my pocket. The $3,000 that went toward Mom’s care each month can now go into savings, family vacations and home improvements. These days, I’m able to go on trips with my family without worrying about who would be there for her, and I’m enjoying every second of it. As a caregiver, I felt guilty whenever I’d get frustrated at being tied down. But now that I’m able to do more of the things I want to do, I have to remind myself that I deserve it.

Re-discovering the Happier Memories

When Mom was sick, it was hard to escape the darkness of the illness that had taken over her mind and body. There was a time when I worried that was how I’d always remember her. But as the months have passed, I’ve noticed that older, fond memories of Mom have increasingly taken the place of the negative ones.

It’s also been helpful to have people reminisce along with me. Mom was a well-known local jeweler for decades, and every couple of weeks, someone I’ve never met before will message me about how she helped them choose their engagement ring, or the pearls they gave their bridesmaids, or other special ways she marked their lives.

Creating little memorials to Mom has also been hugely healing for me. She used to paint rocks and give them out as gifts. After she died, we created a memorial garden where we placed some of her ashes along with colored rocks. I have a basket of them and ask people who were close to her write a message on their rock and put it facedown in the garden. Mine says, “Welcome home.”

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Dayna Steele is Caring.com's Chief Caring Expert and the author of Surviving Alzheimer's with Friends, Facebook, and a Really Big Glass of Wine.


3 months ago, said...

Thanks for this great article! Through my own experience as a caregiver for my Mom with dementia, I truly learned the value of support and self-care as tools for living a healthy lifestyle. My Mom passed away in 2014 and for a while even thought I was doing lots of new activities, the question I kept asking myself was, what now? My whole identity was tied to being a caregiver. It took some time but two years later I feel like I am building a life that fully nourishes and supports me.


4 months ago, said...

I just lost my mother in April. She suffered a stroke in July of 2014 and moved in with us that September after rehab. I'm crying now but mostly I just walk around numb. I miss her so dearly as she was my best friend too. The doubt and guilt and second guessing are the worst...


4 months ago, said...

To Janice: When I had to grab the reins and take charge four years ago, I decided to move us to a mobile home community that has recreational facilities and daily activities. I will soon be alone in my home here but can enjoy going to many of the events we have. I already know a number of residents here. My new neighbor has thrown herself into volunteering in order to get acquainted. Also, I'm wondering if your area has a good enough real estate market to support an "as-is" sale on your parents' home...and maybe yours, too. Just a few thoughts for you to consider!


4 months ago, said...

Lynn, thank you so very much for your kind thoughts and comments. You have been a blessing today for me, without question. May you be blessed for your words. To the woman, who has just decided to place her husband in a nursing home, I commend you for your courage and for all the years you took care of him, even as his mind was failing. I was fortunate in that I was able to care for my parents in their own home, as they had wanted, until the end. I do not regret one moment of the time I spent caring for them, and the years you spent for your husband will comfort you, just as the years with my parents comfort me. My father had dementia, so I know how hard it is to protect a person in such a medical state. You deserve accolades for holding out as long as you have. My parents were both almost 91 when they died, and taking care of them was without question the very best years and the greatest joy of my life. I would do it all again in a heartbeat, if I could. In your case, though - as in so many cases, there might come a point at which you simply can't render adequate care for your loved one. At that point, you have to make the very difficult decision to place them where they CAN be properly protected and cared for. Even though we hate to admit it, there are just some things we are not able to do. I injured my spine, trying to get my parents up and down stairs and in and out of cars and medical buildings, etc., because they each weighed FAR more than my 94-lb. frame. Somehow grace gave me the ability to do my job and safely take care of them. Unfortunately, my spine paid a big price. In your case, safety has to be a primary concern, and you have made the very best decision for your husband. I will hold you in my thoughts as you walk through this part of your journey. May you be comforted and supported each and everyday.


4 months ago, said...

Janice, my heart goes out to you. May life become easier for you in the future. I would have been glad to help you after your surgery if I could have. And, to the 76 year old lady with your ailing husband, I'm so sorry you had to come to the decision you inevitably had to make. May the sun shine on both of you ladies from this day forward. Much love to both of you. Sincerely, Lynn


4 months ago, said...

Yes, the article is very helpful to someone who has gone through this. I'm 76 and about to place my 90-yr.-old husband in a care home. Both of us have always enjoyed tremendous good health, free of damaging accidents. So growing old in itself is a tough journey. My husband's mind is about gone and certainly his physical strength, too. Just making the decision this past week to place him in a care home has been gut-wrenching as I know it spells the end of our lives together. And so it goes...


4 months ago, said...

This is a topic that desperately needs to be addressed. I quit working to take care of both of my parents for almost 14 years, until the were both gone. I'm an only child, and I had no income whatsoever during those years. My own house fell into shambles, and I often had no food in my own house. I had $12,000 saved while I was working, but the quickly went for gasoline used to drive the 18 miles to my parents' house on a regular basis and to drive them to and from their many doctors, specialists, physical therapists, barbers, hair salons, and to the grocery store. Gasoline was extraordinarily expensive, costing as much as $50 just to fill my tank, which generally lasted a week. I have no husband and no family, so all expenses were on me. I watched as the savings I had dwindled to absolutely nothing, and I worried about what I was going to do. When my mother discovered that I was out of money, she gave me money to pay for gasoline and a few other things, and she paid my utility bills. (My mortgage was already paid off.) Whatever money I had left over from the cash she gave me for gasoline was spent on gifts for my mother and my father. I didn't feel as though I were sacrificing, though, because I saw my work as a sacred trust and an honor. My parents had always been there for me during my life, and now it was my turn. The problem for me was that I was so busy that I was able to keep in touch only with my best friend of 35 years and 3 other close friends during the years I cared for my parents. I almost never saw those friends, but I did make time to talk with my best friend fairly regularly on the phone. That sustained me, despite the stress of caregiving and realizing that you are fighting a battle that you are going to lose. But, my best friend and my other friends with whom I had kept in contact all died between the year my father died and the year my mother died. I can't even express the horrifying loneliness I experienced when my mother died. I looked around the funeral home and realized that I was completely alone on this planet. Also, I was 63 years old and had no income. I was so distraught over having lost my mother, that I was unable to get out of bed for 9 months after she died. The only thing that helped me get up again was finding a grief support group. It has been almost 7 years since my mother died, and I am almost as alone now as I was when she died. I am not a believer, so joining a church is not an option for me to meet people. I have gone on Social Security and I don't work, so that isn't an option, either. I met most of the friends i had in school, at work, and similar places, but I have been out of society for so long, and those venues are basically closed to me. I've gone to a great many programs and classes at the library and a beading shop, and I've met people on the hiking trails. But you need to see people on a regular basis over months, with time enough to get to know them, in order to establish any kind of relationships with them. I don't have any place that like to meet people. Added to that, St. Louis is very clickish, something I had always denied, but which I now realize is true. If you don't belong to anything or anywhere, it is highly unlikely that you are going to make any friendships. I've noticed everywhere I've gone that women tend to arrive at events and programs in twos, sit together, talk almost exclusively to each other, and leave in twos. You never have a real chance to crack through the invisible little circle in which they travel. I am now almost 70, and I just came home from having major surgery. When the surgeon asked me if I wanted the hospital to call someone, I had to tell him that there is no one to call. That is a horribly lonely feeling. Facing the possibility of death alone is extremely hard - even harder than facing my mother's death alone. When you have no one, nobody thinks of you, not even people you've known since high school. You sit alone every holiday, every birthday, every special day, every Christmas, and the only person who even calls to check on you is a neighbor. I've been very busy for the last 3 years, plastering, painting, and ripping out old, rotten carpeting, trying to make my house livable again. It has been a lot of very hard work, and it has required a great deal from me. I haven't even begun trying to get my parents' house in order, so I can sell it. Workers charge thousands of dollars for the smallest jobs, which I can't afford to pay, so I do as much as I can myself. That has kept be alone in my house and away from society even more. I've thought about volunteering somewhere, so I can meet people and have some kind of purpose back in my life, but all the work that has to be done in my house and my parents' house has taken up most of my time and has prevented me from seeking out things like that. have to keep on working on these projects, because I can't afford to pay real estate taxes and repairs, and utilities for my parents' house and mine a lot longer. I need to get their house into shape so I can get rid of it as soon as possible. I feel stuck, with nowhere to turn. Simply put, I feel utterly inundated and lonely, and the pain of that is something I never felt or expected. Please address these issues on a more regular basis. Sometimes, it helps just a little to know that you aren't all alone in this kind of situation.