I recently listened to a podcast about caring for a spouse with ALS in which the person being interviewed said she had heard a caregiver felt privileged to care for their spouse while they died. She did not understand that. To her, caregiving sucked. She hated everything about it. Please do not judge her for feeling that way. If you have never cared for and nursed someone who has been dying from ALS, you have no idea how hard it is.
And yes, IT SUCKS!
I hope if she or anyone else who feels that way reads this, they will see their former caregiving in a new way.
I felt extremely privileged to care for my Raymond as he died from that horrible disease. I told him that when he apologized for any task that he needed help with, and I truly meant it.
Caregiving is hard, especially when a person is losing their motor control. However, I always tried to keep in my mind that it was much harder for Ray to lose control over his body, than it was for me to give him the care he needed. I was not perfect and sometimes I failed to remember that. The woman I mentioned above had to deal with some things that were quite extraordinary that I never even knew could happen to a person with ALS. I am truly grateful Ray never suffered in the same ways her husband did.
You might be wondering where the privilege comes in if caregiving so hard. It comes from the things you tell yourself about your situation. Changing your thinking and your perspective is key to your own sanity in situations like these. I am in no way suggesting that other spouses / caregivers have too much negativity in their caregiving. I absolutely know they love their PALS and their late spouses. I absolutely know they all gave great care to their PALS. We all did the very best we could in horrible situations. My goal here is to help others going through this or any kind of struggle and to help those who have gone through it to look back and gain a better perspective on what they went through. And maybe, to realize they really did feel privileged to care for their spouse even when it sucked.
In my heart, which ached for my dying husband, I felt honored that I was in the position to show this man how much he meant to me by helping him go through this life altering, life ending illness. To help ease his pain, to show him how much he was loved, and appreciated; to show him he was worth all the sacrifices I had to personally make to help him was the least I could do for him while he was dying. His life was ending and my heart, my soul, my body wanted to take away any amount of pain from him that I could. I saw this as my last opportunity to show him forgiveness, love, compassion, and gratitude for all he had given to me and to Joshua during our life together. This was my last chance to show him I did not want to lose him. I had that privilege. Some people don’t get that chance. In my imperfect caregiving, he knew my heart.
And still, IT SUCKED! There were times I hated it. There were times I wanted it to end even knowing what that meant. And it was still a privilege. It sucked and it was a privilege when we cried together. It sucked and it was a privilege when we got angry with each other while caring for him. It sucked and it was a privilege knowing we were laughing for the last times together. It sucked and it was a privilege to get up 15 times at night to adjust his breathing mask. It sucked and it was a privilege to do whatever he needed me to do every 5 minutes 24 hours a day for his last two or three weeks. It sucked and it was a privilege to help him in ways we never would have thought he would need. There were times I hated the circumstance we were in, and times I did not want to get out of that bed to help him, but I knew it was a privilege to do it. In the end, after he died, I was grateful it was over, but I missed the healthy man he had once been. I knew I had done the best I could for him. Some people say they want their spouse back even if they must keep caregiving for them. I was not one of those people. I was glad he was finally out of that body that had betrayed him. I was glad the ordeal was over for us both and for Joshua.
To give care to someone who is dying and can’t do anything on their own is one of the most compassionate and empathetic things you could ever do. It is also the hardest thing you could ever do. If you are ever able to give care to someone you love, give yourself the gift of knowing what a privilege that is. Imagine if you ever need care like that. Imagine being helpless and needing someone like that. You would not want to need the help. So, if the person helping you feels it is a privilege to do those chores, you both win.
Peace be with you.
