Category Archives: Life as a caregiver

Respite, personal help, counseling, inspirational thoughts

Surviving the Grief


This article is mostly for those who’ve lost a loved one and are having difficulty moving forward. At the time of this post, it’s been 3 months since my husband died from Lewy Body Dementia and overall, I’m doing very well. I’ve been asked many times how I’m holding up as well as I am and as usual, those sorts of questions make me stop and think. I’m not totally sure why I smile more than cry, but I thought I’d share my survival plan with those struggling with the loss of a loved one. And, yes, I developed a plan after he passed away.

My mental health is too important to leave something this difficult to chance.

First, I’m a very goal oriented person. It’s natural for me to set goals and work toward them in all aspects of my life. Having goals keeps me focused on the future instead of the past. I often think of the saying, “Quit looking in the review mirror. You’re not going that way.”

So how did I apply that philosophy to my grief?
My husband died on November 13, 2016. Just a few weeks before Thanksgiving. It’s never easy losing someone you love, but having it hit just before the holidays can be brutal. Add to that the beginning of winter (seasonal depression, anyone?) and there’s the potential for a total collapse. Knowing that, I set a major goal for myself with smaller goals to help me achieve that Big One. My large goal was pretty simple…


I was determined to survive the loss of my life partner. I have children, grandchildren and an 82 year-old mother who love and need me. Giving up is not an option. Surviving this would require focusing on two different aspects of my life: my physical health and my emotional health.

The first thing I did was allow myself time to rest and heal. The last two months of his life were exhausting both mentally and physically for our entire family. I gave myself until the first of the New Year (about 6 weeks) to rest.  I had to take care of the legal issues that arise when your spouse dies, but I gave myself a pass for all other things. There would be no cleaning out closets or cabinets. My body needed a break. In order to help with the stress, I began walking in the mornings, but I didn’t push it. I walked 3-4 times a week and usually only a mile. The bulk of the time, I rested, watched TV, read, and planned a future for the new me.

To cope with the holidays, I altered the way I usually celebrated. I spent Thanksgiving out of town with my daughter and her family in their new home. On Christmas Eve, my mother spent the night in my apartment. The next morning, we passed gifts and I fixed Christmas dinner for just the two of us. We finished the day watching movies together. These were all different for me as far as celebrating the holidays. As a result, they kept me from focusing on the fact my husband wasn’t there. Altering the way we celebrated helped quite a bit.

During my 6 weeks of rest, I made a list of things I enjoyed or was interested in trying. I asked myself, “If I had no one to worry about but me, what would I do with my time?” Because for the first time in my life, I wasn’t taking care of children, or a husband. I really did have the time to pursue my interests. This was new for me and took a while for me to truly grasp that concept.

My Joy List included:
Traveling, hiking, fishing, writing, reading, star gazing, playing guitar again, learning the violin, learning to draw, and photography. This list would be the focus of my emotional survival. Your list will most likely be entirely different. It might include things like getting a pet, putting in a new garden, or rebuilding a classic car. What’s on the list isn’t important as long as they are things that bring you happiness.

When January came around, I kicked my new goals into gear.

Physically, I wanted to increase my fitness walking to between 3 and 4 miles per morning by March. Being winter, this required walking inside our facility (I live in a retirement community), but I wanted to be able to hike by summer and this 60 year-old body needed some fine tuning. That also meant eating healthier. It’s easy to let those things slide when you’re in a caregiving situation. It was time to take care of me for a change.

As for my emotional well-being, that’s where my Joy List came in. Many of the items on that list revolved around traveling and camping. I had traveled my entire life, but we had to sell our RV when my husband became ill. I missed traveling a great deal, and during the last couple of years of his life, I decided if I survived his illness, I was going to camp again. So, I bought a used RV after he passed away (more can be seen on that here) and then joined a travel group for single women who like to camp but don’t want to go alone. It’s called Sisters on the Fly, and there are over 6,000 members! Each state has a chapter and there are events planned throughout the year, sorted by region. Early in January, I reserved spots for three different camping events. There are several events scheduled each weekend across the country and one of the toughest things I encountered was narrowing my choices down to a reasonable number. I wanted to attend all of them! The first one I chose was in Gettysburg in May and I’m extremely excited to join in the fun.

The key to that sentence is: “I’m extremely excited.

That doesn’t mean I’m not grieving for my husband. I still have nights when I feel as though my heart has been ripped from my chest. I still break down into tears periodically, but when those moments happen, I force myself to think about my plans and the future. I’ll confess, sometimes it’s tougher than others. But the main point is that I have made my well-being a priority now. For eight years, my number one goal was to keep my husband as content and comfortable as I possibly could. It’s my turn now and I intend to tackle my new goals with as much vigor as I did my husband’s care.

So what are some tips I can share for how I’m surviving the loss of my husband after almost 40 years of marriage and 8 years of caregiving?

Get physical. Walk, swim, bike…do whatever you can to move, not only for your physical well-being, but to reduce stress. Exercise releases endorphins and endorphins make you feel better (and they’re free.) It’s also important to get doctor’s checkups you might have missed while tending to your caregiving duties.
Make a list of things you enjoy then do them. Now is your chance to focus on what YOU want and not on what everyone else wants from you. Whether that means travel or simply getting a pet to keep you company, it’s time to spoil yourself. At least once a day, look in the mirror and say, “My life is important too.”
Get out and interact with people. Sitting home will only make the depression worse. Join a group of some sort-church, volunteer somewhere, go to the Y, support group,…even if it’s an internet group, just INTERACT with other people.
Allow yourself to grieve, but don’t dwell in that dark place. Grief will begin feeding on itself if you’re not careful. Make yourself laugh at least once a day. I have a Pinterest board with things that make me laugh. (Youtube videos of babies laughing will do it every time) It’s hard to be sad when you’re laughing.
Accept that being happy does not mean that you didn’t love your spouse. It means you’re not going to allow their death to erase all the joy you’d shared with them through the years. Keep the joy in your life, look for it, embrace it, and actively seek it. There is no better way to honor their memory than to smile when you think of them.

Hugs to you all. There is life after caregiving, but you have to reach out for it. It will not come knocking on your door.

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A Different Kind Of Grief



I’m no stranger to grief. In my 59 years, I’ve buried all of my grandparents, both of my sisters, both of my in-laws, my father, and now my husband. The loss of the sister closest to me in age was particularly hard as she was my best friend and breast cancer took her way too soon. I watched her die over the course of two years and losing her changed my life. For years after her death, I marked every event in time as to whether it happened before or after she died. Her death shifted my world.

Losing my father was difficult too, but he was 79 years-old and for some reason, that made it more bearable. Read the rest of this entry

The Stages of Caregiving



There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.

Stage One: Confusion

The caregiver knows something is wrong, but doesn’t have a diagnosis yet. Read the rest of this entry

“My thoughts are not my actions.”


Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”

Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story. Read the rest of this entry

Game Changers


Game Changers

One of the more frustrating aspects of dealing with Lewy Body Dementia is the wild changes in ability often experienced by those who have the disease. Their abilities to function can go up and down more frequently than Oprah Winfrey’s weight, throwing the caregiver into a constant state of confusion as to how they should prepare for what’s coming next. While I would never presume to predict the future for anyone dealing with this disease (or any other disease, for that matter) there are certain changes along the way that most will eventually deal with, unless their LO (loved one) dies suddenly. I refer to these milestones as “Game-changers.” Game-changers are tipping points in our LOs functioning that require us to alter our lifestyle in some manner. These are not day-to-day changes in function, but specific milestones that alter life dramatically.
These milestones will be different according to your individual situation, but seeing the changes experienced by others can provide food for thought for those starting this journey.
In the hopes of helping other caregivers understand the pivotal points that lie ahead for most, I’ve put together the following list of life altering changes we’ve faced in the last 8 years. (Feel free to share)

Game-changer #1– the diagnosis 2009/2011 Read the rest of this entry

Please Forgive Me


Please Forgive me
Please Forgive Me

Dear friends and family,

I know I’ve been out of touch lately. I hope you realize it’s not by choice. No one would choose what’s going on in my life. But right now, I need to beg for your forgiveness and understanding.

Please forgive me for forgetting your birthday, anniversary, Christmas…
Well, you name it and I’ve probably forgotten it. It’s not personal. There are days I forget my own name. I leave milk out of the fridge, forget to pay the electric bill, I’ve even found myself driving down the road, forgetting where I was going. I’m blaming it on a caregiver’s fog that seems to have taken over my brain. Years of stress and anxiety are taking their toll and my brain is running at about 50% capacity. Please don’t forget me, even if I’ve seemed to have forgotten you. Read the rest of this entry

10 Things I’ve learned from caregiving


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Being a caregiver is tough, but I’m a firm believer that life lessons can be learned regardless of our situation. Below is a list of things I’ve learned while providing care for my husband for the last 8 years. (Feel free to share this post)

1. I am not the superhero I thought I was.  I have limits and when I’ve reached those, I need the help of others. The longer this journey goes forward, the more humble I become.

2. I’ve learned to say “no.” I can only do so much and as a result, I’ve learned to say no to the requests that still come from people who don’t understand our situation. It isn’t easy. I’ve always been the one everyone ran to for help and “volunteer” work, but I can’t do that right now. I envision myself as a glass and I’m currently filled to the brim. There’s no room for other obligations despite how desperately others think they need me. Being selfish isn’t easy for me, but it’s currently paramount to my survival.

3. Most people have no idea what caregiving is like. Read the rest of this entry