They gave us a list. To make preparing easier, it read.
It included all the basics. Practical things: furniture, linens, toiletries, and clothing. Under each category there were specific items listed.
We were pressed for time. Rushed. We had known the day would come; yet when it arrived we felt unprepared. The circumstances were unlike anything we ever could have imagined.
There wasn't time to process everything we were going through. We had to focus, work hard and get things ready fast.
I felt a heavy weight as we made our preparations. This was more than a room in a memory care facility. It would be his home for the rest of his days.
He needed familiar things. Items used in his everyday life before he became ill.
He needed favorite things. Items that bring him comfort and joy.
He needed reminders. Items to stimulate treasured memories and help him retain them for as long as possible.
But when those memories are gone, I want my father to be surrounded by evidence of a full life. A good life. I want him to see he was loved by many. Accomplished much. Laughed often.
I painstakingly compiled a photo history of his life. Family. Friends. Trips. Events...
It was a labor of love. But, if I'm truly honest, it was as much for me as it was for him.
The thing about dementia is, the grieving process begins long before your loved one dies. You lose him before you actually lose him. It is a pain unlike any I have experienced.
And, at a certain point you are relegated to the sidelines of your loved one's life. Forced to watch the descent into madness and powerless to stop it.
In many ways, the man I have cherished all my life is gone. But he will forever be my hero. My role model. My dad. As long as he is alive, he deserves to be treated with love, caring, respect and above all, dignity.
And so I helped prepare a room for my father. Because it was all that I could do.
This post originally appeared on Moonfrye.com. It is part of a series I will be sharing here concerning my family's journey with dementia.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
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