I’m grateful to have recorded some of the conversations I had with my mother just after she was placed in a facility. Listening back on them, I get to remember that she was happy, for a time, and even though she couldn’t entirely string her thoughts together, she was able to express herself well enough, and she told me some important things that I am thankful for.
It comes up, often, in the support group I co-facilitate, that caregivers are overwhelmed. I’ve noticed this loads heavily on the front end of caregiving, as well as when a loved one approaches or is in end-stage. The stress of discovering a loved one has dementia throws a family—which might consist of an only child—into a crisis of sudden great emergency. It seems there is a general consistency that by the time a family really knows it really is dementia or Alzheimer’s, the loved one is often already close to moderate levels, meaning certain tasks can no longer be accomplished like cooking or bill-paying. This is loss of executive function—tasks that require a step-by-step process. A family, as happened in my case, can feel panic because the condition of dementia is very clear to all but the loved one with dementia is in denial, often fighting about there being anything wrong at all.
Near end-stage, the length of time and energy we have already offered our loved one leaves us feeling depleted beyond anything we might ever imagine. I continue to be amazed I ever got through it with my mother, and only days ago commented to a friend that, though I was being very aware of my energy and doing what I could to safeguard it, the situation was so very overwhelming and that end-stage required more from me, as I’ve written before, at a time when I felt I was just about out of energy.
It feels as though the well has run dry. We have lived already for years on adrenaline and cortisol, lack of sleep, maybe even nutrition, and yet, as our loved one enters into the stage that accelerates their condition and brings them closer to their transition time, we find ourselves needing a new reserve from our well of being that feels entirely depleted. How to help our loved one now, when we are just about at bottom ourselves? How to find the energy to cope and assist? It isn’t easy, I won’t lie. Like I said, in retrospect, 16 months after my mother’s passing, well into my recovery from the real trauma of it all, including the ongoing energy needed to get through it, I only now see how really absolutely drained I was, especially in the last nine months of my mother’s life. I tell my friends there were days when I would get out of bed and begin singing out loud the song of Hermey the Elf in the Rudolph…Reindeer animation: Put one foot in front of the other, and soon you’ll be walking out the door…. I am not kidding. I sang this to myself on many a morning. I also said to myself almost every day in those last months, Ok, Leigh, just do today. One thing at a time. Work. Eat. See Mom. Rest. Today. Just do today.
The exchange for all of this was letting many things go. I’m a DIYer. But that little concrete crumble near the garage did not get repaired. The outside of the house got painted in phases, three sides done over three years, then a two-year gap to finish the last side. Bills were always paid, but a mess of paperwork littered my home. One room became a catchall for items that were so far back on the burner I simply shut the door and didn’t go in there for three years. Life became a severely pared down version of what it once had been, truly, work, eat, see Mom, rest.
When a support group member explains they are drained and worried and have a bucket list of items needing doing for their loved one, I know exactly how they feel. I often remind them to look for the helpers. If their loved one is being neglected, even in “benign” manners by, for example, their attorney-in-fact, I suggest they report it to their county social worker, or, where I live, the Elder Justice Center, or the Ombudsman of the facility where their loved one is staying. Many families with loved ones in a facility go through such challenges that are a natural part of the progression of the condition. An otherwise gentle person is suddenly hitting staff or throwing tables, refusing hygienic care, refusing to eat, and so on. But in cases where there are circumstances that cause alarm, cause concern that your loved one could be at risk, say of falling or choking, as happened with my mother, it is important to get others’ attention, people who can help you, to try to prevent harm coming to your loved one. The reality is, staff in a facility cannot watch your loved on 24/7, so the goal is to do as much as possible to mitigate factors that could contribute to a loved one coming to harm as a natural part of dementia’s progression.
Learning to put one foot in front of the other is one way to cope. The truth is, your loved one is not going to get out of this alive. It’s such a painful awareness to reconcile with. Knowing this may or may not help. Multi-tasking likely needs to end, and the focus turned to the most urgent problem at hand, whatever you determine it is. I pressed and pressed for staff to be aware my mother was having difficulty swallowing. Months before she fell, I warned over and again she was having balance issues. I got her safer shoes to walk in, asked staff about possibly starting her on a walker, which wasn’t done, and she fell four months after she had near-fatal choking incident. Two weeks after the first fall, a second fall—both unwitnessed, as my mother was alone during each, so it was reported.
We try to prevent such things but dementia has its way, and we can’t safeguard our loved one entirely against its ravages. Do your best, knowing it is all you can do: your best. Don’t blame yourself up when an event occurs, because it will. Try to find your Helpers. This is so important, not just your support group, but people on-site who can help you in the things you are trying to accomplish for your loved one. Focus on one thing at a time. What is most important? Get that done. Allow yourself NOT to multi-task. Give yourself permission to take one day at a time, one step at a time, and you will get through it. There will be grace. Take time to rest, and while you continue to do your best, love yourself for being such a caring partner as your loved one journeys through dementia. And please remember: You are not alone.
For myself, now that it’s over, now that I’m past all the day-to-day near-panic of noticing Mom’s dementia, and then helping her through end-stage, I can see how much I gave to my mother. I can see how much it required of me, and I can see that it was almost incessantly overwhelming. Please know you will get through this. It will end. If that is helpful, try to remember it. This is not a journey that goes on forever. You are creating it as you are going through it. Try to make it something you can look back on in the peace of knowing you did not let your loved one down.