I recently talked with a woman whose husband had moved into the same Memory Care neighborhood as my mother three months before.
Emotions
She told me that she was stuck in a cycle of grief, guilt and relief since he moved there. There were several reasons that forced her hand into making the decision that her spouse needed to move into a lock-down unit (we had the same kind of no-other-choice situation with Mom: see my series “When living alone becomes unsafe”). But with that decision comes a host of emotions.
The one we should focus on most as caregivers is relief. The stress of caring for someone with dementia is immense. And at the top of that list of worries is safety. If you have someone who is exit-seeking, likes to wander or explore, uses kitchen appliances or tries to drive, the stakes can be high. You are literally dealing with life or death. You not making sure your loved one stays safe can be life threatening. No pressure, right?
But where do we tend to focus?
As caregivers however, I feel like the guilt can become all-consuming. We feel guilt for even feeling the relief that a move to Memory Care brings. So more guilt on top of the guilt of making the decision for the move in the first place. It piles on, and the time you spend feeling relieved is over shadowed.
It’s also hard to find support during this time. I don’t mean what you get from your family and friends. I’m talking about society. What you can’t get away from on TV shows, movies and main stream media. The pervasive statement, or joke, about making sure the kids don’t “put me in a nursing home” or an adult kid joke-threatening that they will “put you in a nursing home” to a parent.
This can also be a culture thing. Certain cultures have any elderly family member move in with them for care. It is not even a question. But I know that realty often looks much different than people picture. In addition to caring for my mother, I work with geriatrics and the care tasks involved can and often include: bathing, changing briefs and cleaning after using the rest room. These are not easy tasks and also involve a kind of closeness most of us don’t find comfortable. And this is just a snap shots of needs that you may have to perform.
I guess what I’m saying is that it’s more than just having Mom or Dad live with you.
Grieving
I think out of the cycle of emotions that were shared with me, grief is the one that hurts the most. You are grieving the loss of your loved one as you knew them, but also the loss of your relationship and the future you had envisioned. As this woman had tears streaming down her face, she described the changes in personality that her husband had gone through, as well as some of the more difficult times that they had experienced in the past few months. She told me how this is not what they had pictured for their lives.
I sympathized with her and shared some of my own stories. We bonded, spouse and daughter, over our losses and pain. I marveled at how similar our experiences were. And I grieved for her. Looking at this woman who clearly loved her husband so much, but who could not even visit him because he became increasingly aggressive in his attempts to leave with her. For she represented home. And like my mother, he just wants to go home.
Home
I have spoken many, many times about the concept of home for someone with dementia or Alzheimer’s. And I shared my thoughts during this conversation about home no longer existing for her husband or my mom. Because home is safety, security and comfort. And dementia has taken the ability to feel those emotions away. No matter where my mom is, she will not recognize it and her brain will continue its hallucinations and delusions that tell her things that make her scared and anxious.
So safety is what I focus on. Because that is really all I can provide. As I mentioned earlier, a person with dementia can physically harm themselves, and others, with their decisions. Sometimes those decisions cost lives. It happens. Moving your loved one into a lock-down unit with professionals to care for them is one way to keep them safe. There are other options, of course, and whatever you choose is personal and it is YOURS.
The cycle
No matter what you choose, it is the right decision for you and your loved one. I think the cycle of guilt, grief and relief is spot-on for what I feel as well. I immediately connected with these feelings. Though us caregivers may live in this never-ending cycle of emotions it is important that we don’t wallow in any one of these for too long.
And just maybe we should add confidence to our emotional cycle. We should stand proud in the decisions we have made that are born out of love. I felt this for the wife I was speaking with, knowing she did what needed to be done to keep her husband from inadvertently harming himself, or her. She made a painful decision that ensured his health and safety.
My mother is also cared for and safe. I should focus on that win, because my sister and I are the sole reason that she is where she is. It is an accomplishment that shouldn’t be clouded in guilt and a decision that is an expression of our love for our mother.
And it is, quite frankly, as simple as that.