Worrying That, in the End, You’ll be Cheated

heartcloudLast summer, my uncle died. That afternoon, I spoke with my cousin, Kelly, who sounded shell-shocked as she spoke about the awfulness of missing her father’s last moments. He died in the hospice unit shortly before Kelly and her mom arrived. Kelly replayed the events of the morning, railing that she should have left the house earlier, gotten out of bed as soon as the alarm went off, made her arrival at the hospice her first and only priority that morning.

Kelly had been there–emotionally, physically, spiritually–for her dad for many years. She was the kind of loving and caring daughter I can only aspire to be. And, yet, she felt like a failure, that she had let her father down, deserted him to manage alone. In essence, she felt let down by life. How unfair that the last moment left without her.

During Saturday’s episode of Your Caregiving Journey, Chris ( @thpurplejacket) shared this same fear: That something will happen to his partner while he’s at work or out taking a walk or enjoying a bike ride. This worry that he’ll miss has been ruling his day, pulling him into house, trapping him.

It’s completely understandable. We care and care and care and brace for bad news, hoping our family members will continue. And, then we hear the news that time is limited. We weather that news only to be left without the detail we need the most–when that last moment will happen. If only we knew, then we could leave our calendar open, take a leave of absence from work, make sure everyone arrives on time to say farewell, organize that last special get-together.

But we don’t get the expiration date. So, how do you live with the unknown?

A few suggestions:

1. Live in the moment rather than managing the future. The worry about what will happen takes you out of this moment, the most important moment you have. When you try to control the arrival of the future, you realize today departed without you.

2. Talk out your fears with your caree, if appropriate, or other family members or your support system. Unvoiced fears truly hold your heart. When you let them out, you can better manage them while uncovering a solution you overlooked.

3. Plan special moments for every day, such as expressing gratitudes together in the morning and sharing favorite memories in the evening. You also can simply sit with each other, in quiet love.

4. Talk out your day’s priorities with an understanding support system. When you verbalize what you’re trying to juggle, you’ll better understand how to organize your day as well as what can be delegated and what can be eliminated. The day can feel like a jumble; talking it out can make sense of it.

5. Live. The death watch will take the life out of you. As much as feels right to you, take breaks for yourself. And, when your break is over, share what happened during your break with your caree. It’s how you continue. As much as feels right for you and your caree, plan outings and adventures together. It’s how you both live well.

6. Measure the importance of your journey over the many moments you shared rather than just the last one. It’s the culmination of those moments that matter. If you put too much pressure on the last moment, you can minimize the importance of all the moments. Your presence throughout the entire caregiving experience has been steadfast, dependable and unshakeable. That’s what’s most important.

I’ve wondered why we don’t know our final day and time. Why isn’t death more like birth, when we have a much better idea of the birth day? I guess we don’t know so that we keep trying to live life to its fullest, so that we don’t give up too soon and so we treasure each moment because we don’t know our many we have left.

On this caregiving journey, it’s you and your caree. Together, you fight, battle, catch your second, third, fourth, fifth winds. Caregiving ends, sadly, with the final separation. As I explained to my cousin, Kelly, sometimes your caree needs to end the journey without you.

I often think of my aunt, who died in 1995. During her last week, my cousins, parents and I did all we could to keep her company so she could die with us rather than alone. Which just made it so hard for my aunt to pass. Finally, a hospice nurse asked us to leave the room so my aunt could be alone. With the room to herself, my aunt passed, with one tear rolling down her cheek.

I’ve come to understand that she really wasn’t alone, even though we stood outside her room. When we left the room, we made room for others who had passed before her to come and get her.

Our carees never die alone. Our purpose is to simply prepare, as much as we can, for the transition. It’s not our job to control the timing of the transition. I believe the experience of caregiving at the end becomes like maintaining a VIP waiting room. We care for our carees, our VIPs in our houses that become like waiting rooms in life as the other side makes ready for them to arrive after life. We gently let go to give over the care of our caree to the other angels.

It’s so hard to let go. And, that’s why, sometimes, life takes care of it for us.

So, know if the end happens without you know that you didn’t get cheated. You can rest in the knowledge that life just took your cue and continued your loving care with the help of the angels.

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About Denise Brown

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

5 thoughts on “Worrying That, in the End, You’ll be Cheated

  1. Janet Willis

    I truly believe some people want to die with none of theit love ones in the room. Our neighbor who died Dec 23, died about 3 hours before her family got her to celebrate Christmas with her. I would have felted sorry for them but they hadn’t been here for over a year. She had fall a week before she was admitted to the hospital. My husband took her to the hospital onThanksgiving, they release her and we fix her dinner at 9:00 PM. When she was finally admitted to the hospital my husband visited her every two days, her family was no where to be found the three weeks of her life when they should had been here to help their mom.

    • Avatar of DeniseDenise Post author

      You remind me, Janet, of my grandmother’s death.

      My parents and I (with my aunt and uncle) kept my grandmother company during her last week. She hung on and and on and on…. She began to die before Thanksgiving and then died the Monday (or Tuesday) after Thanksgiving, 45 minutes after my older sister (finally) went to visit. We all knew she waited for my sister to say “good-bye” before she finally went. A nice last gift from my grandmother. :)

  2. Avatar of PegiPegi

    Over the final days keeping vigil over our much loved mother, the hospice nurse told us on more than one occasion it has been her experience that our loved one seems to pick their time. That, and who may or may not be there. She explained that she found that we may not know right than; but someday we would understand. It made sense to me. Years earlier at my father in laws bedside (we were very close), there was a lot of commotion. He was not conscious, but seemed to grimace. At one point there was just his four children and myself; I choose to leave the room at this point and within the hour he passed. I did not feel slighted or left out. I sat alone by his side for a long while afterwards and felt peace in his choice; it was what I had expected. He refered to me as his daughter and loved me as such for years. He had been estranged from a couple of his children for a decade; my husband and I reunited them all at the end. This gave Pops his final peace.

  3. Tandy Elisala

    Denise, what a beautiful story. I agree wholeheartedly with your comments. I find it fascinating how our loved ones choose different ways to pass away/return home. The day my mom died, my dad was having gall bladder surgery. My mom had me, my sister and my 3 kids (her precious grand babies) with her. We prayed, we cried, we sang songs, we danced, we played her favorite music, we talked to her as if she could understand us (we knew she was in there), we went around the room saying what we were grateful for and how she touched our lives. We all touched her ever so gently as she died. It was absolutely beautiful. My dad wasn’t there and we believe she wanted it that way. The dynamic would have been different. The day my dad died, my sister and uncle were with him in hospice for close to 24 hours. Three hours later, I had this strong urge to go see him and couldn’t shake it… so I left to see him around 10:00pm. The hospice nurse called me at 10:28pm as I was getting off the freeway exit. She told me my dad was active and wanted to know how far away I was. It took me 2 minutes to get to the facility. I ran through the halls and slid down next to my dad at 10:30pm. He died at 10:36pm. I had 6 minutes with him. We had all said what we needed to say. I just didn’t want my dad to die alone. However, I think he waited until everyone was gone to do just that. Still, I was by his side and I’m glad to have had that experience with him. There is no right or wrong way here. I believe everything happens as it should. Now that I’ve shared this story, I’m not sure what compelled me to do so, yet here we are:-) Thanks for inspiring positive thoughts about our loved ones that aren’t here with us physically.

    • Avatar of DeniseDenise Post author

      Hi Tandy–Thanks so much for sharing your experiences. You are so right–there is no right or wrong. It’s so helpful for us to remember that and stay open to believing what’s best is what will happen. When we release judgment, we can see the miracle of all our moments. :)


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