This article is written for those who have cared for someone through an extended illness, then lost that person at the end. Some caregivers are able to make peace with their efforts in looking after their special person; more often caregivers suffer about it and need time to come to terms with it. I’m one of the second group. When I sink into a low mood I still struggle with what I ought to have done or done better.
The term “Caregiver’s Remorse” or “Caregiver’s Guilt” means that the caregiver heaps blame on himself/herself for not doing a good enough job for the person who’s ill. This remorse can be present before and after death and is very common. Most often the hardest hit is the spouse, who’s usually, but not always, the primary caregiver. Caregiving can take place at home, in hospital, or in a care facility. Caregivers often neglect their own health and socializing and can become exhausted, demoralized, and even ill. It’s easy to say that caregivers should take advantage of extra help or respite care but the reality is that many of the caregiver’s needs can end up on the back burner. Sometimes caregivers feel guilty about moving their partner into care when they can no longer cope with the demands at home. At this point, they may feel guilty about balancing time spent with their partner in care with time needed for other jobs and for relaxing.
After your husband’s death, the long list of items to beat yourself up about might include that you didn’t see the signs and take steps years before his health failed, that you didn’t do enough research about the disease in question, that you didn’t seek enough or appropriate medical help, that you were sometimes grouchy and negative, that you didn’t help him get a shower often enough, that you forgot to bring him strawberries when he’d asked for them, that you didn’t take him out enough, and on and on. So many big things, little things…
After Alan’s five years of illness and death (2019), I was having a hard time with what I saw as my caregiving inadequacies and this is really the main reason why I began speaking with my therapist. I was tired and sad, unable to see a positive perspective of my years as primary caregiver. I was definitely punishing myself. I felt a heavy sense of culpability, since my kids and stepkids had already lost a parent and now they were losing another. The fact that Alan had an Assisted Death added to the burden. I felt that if I had made a better effort as caregiver, maybe his health would have improved and maybe he wouldn’t have opted to have the Assisted Death. I felt I should have been able to save his life if I had tried harder. Other family members, including Alan himself, told me I was doing a great job; this was just me, internalizing and placing blame on myself.
How does a person lay this guilt to rest? There are universal truths about caregiving that I knew in my head were correct and I had to make my heart accept them. It took a very long time and I still think and wish.
- Caregiving is a “no-win” situation, unless it’s just a brief time for surgery
or a temporary illness. If your husband has a degenerative/terminal illness,
the course will be downhill and the end will eventually be death, in spite of
your best efforts. You don’t have the power to change the outcome, much
as you wish you did. Let that go. - We’re only human; nobody has the stamina or endless optimism to be the
perfect caregiver. I read in an article that “a caregiver is a person trying to
do the job of an angel.” On any given day, you might feel tired or unwell or
in poor spirits. You can just do your best for that day and let it be good
enough. - We often judge ourselves much more harshly than we judge others. Give
yourself credit for taking the responsibility, for being there day after day,
for all you managed to do right. Appreciate what an amazing, loving, unselfish thing
you did!
Twice A Widow 