Last 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.
- If End-Of-Life Were a Diagnosis… (caregiving.com)
- Video Chat: Worried About End-of-Life Decisions (caregiving.com)
- ARGH! It’s Not About Putting Your Life on Hold (caregiving.com)
- A Life Line: Our Most Important Work Happens Outside the Cube (caregiving.com)
- When Life Happens, Continue (caregiving.com)
- End-of-Life Care: Working Within the Laws of Nature (caregiving.com)
- 17 Reasons Why Caregiving Makes You Awesome (caregiving.com)
- Podcast: Table Talk with Bob (caregiving.com)
- Podcast: Table Talk with Chris (caregiving.com)
- Tell Us: Has Caregiving Cost You Your Job? (caregiving.com)