Learn more from Ellen Gerst, author of “A Guide for Caregivers of Aging Parents with Alzheimer’s: Words of Assistance, Comfort and Inspiration,” about how to to respond to frustrating situations encountered while caregiving.
Retaining Your Sanity as an Alzheimer’s Caregiver
Emotions and intellect don’t always run on parallel trajectories. Your emotional reactions tend to rise quickly while intellect often needs more time to process a situation before you can respond appropriately. As a caregiver, it’s your job to learn how to reflectively respond vs. reflexively react when frustrating situations arise.
Intellectually speaking, these are the facts I know about my mother:
1. I know: Mom is paranoid due to her dementia, and the disease is at the root of her desire to hide or misplace things. When she can’t find them, she looks to someone else on which to place the blame, usually her caregivers or the cleaning staff.
2. I know: the personnel at her facility aren’t stealing her jewelry or other items. They are all long-time employees who value their jobs too much to take a risk for petty theft.
3. I know: the misplaced items are in her room somewhere, for Mom is very good at hiding things and tends to change her “safe spot” often without letting me know.
4. I know: that the missing items are usually found, even if it’s sometimes months later. If not, I believe Mom probably threw them out.
Despite “knowing” these facts, it’s difficult to avoid getting caught up in Mom’s emotions.
Nevertheless, when a situation occurs, I do my best to offer support by reassuring her that the items are somewhere in her room and that I will locate them. I also try to stir her memory by talking about her day in order to recreate the scenario when she misplaced the particular items, which can provide clues where to search. Usually, I find the goods she has squirreled away. Unfortunately, last week I failed and, on top of that, I started to question my own sanity.
Reflectively Reacting vs. Reflexively Responding
Mom has two rings and a watch she wears every day. When she’s in her room, she removes them and places the items in a special pouch in a designated hiding spot.
Last week, I received a panicked call that her jewelry was “missing.” She recollected that she was wearing the items earlier in the day when she participated in an activity. Afterwards, she went back to her room to nap, removed her jewelry, and didn’t leave again until it was time for dinner. In the meantime, a housekeeper came in and cleaned. When Mom couldn’t find the jewelry, she concluded that the housekeeper must have taken it.
I raced over to her place and searched every nook and cranny but to no avail. I gently suggested to Mom that the jewelry was simply misplaced and urged her to take deep breaths in order to calm down. I mentioned that it’s difficult for anyone to remember or to find things when they’re upset. Additionally, I proposed that the housekeeper might simply have put the jewelry in a different place while she was cleaning and failed to mention it. However, to Mom, the jewelry was missing and there was no imaginable conclusion other than it was stolen by the housekeeper.
It was no use arguing with her. However, it was late on a Friday afternoon and, since the housekeeper had already left, it wasn’t possible to question her. I assured Mom that I would find out what happened but that we would have to wait until Monday. I was secretly “hoping” that, once Mom got over her initial agitation, she might remember where the jewelry was hidden.
Despite rationally “knowing” all the aforementioned facts about Mom, when I got home, I started to question myself. I thought…
- “Well, maybe the jewelry WAS stolen because I certainly couldn’t find it.”
- Continuing in this non-productive train of thought, I queried, “Maybe, the couple of times I couldn’t find the missing items, someone actually DID come in and steal them.”
- Next, I called both my sisters, and we started down the “Maybe, Maybe, Maybe Trail.” This resulted in all three of us being distressed about the situation.
At 9:30 that evening, Mom called to tell me that she found her jewelry in one her dresser drawers. I’m confounded because I had searched each one and never saw it. Of course, she might have hidden it someplace else, moved it to a new spot and then believed the jewelry magically appeared. I’ll never know, but here’s the lesson to be learned from this incident:
As caregivers, it’s important to avoid getting caught up in the delusions and paranoia of the patients or family to whom you’re attending. They have lost their power to reason logically. Hopefully, you have not.
That said, it’s difficult to refrain from feeling sympathetic and hurt by the obvious pain they’re experiencing brought on by failing memory, confusion and the loss of reasoning skills. My heart aches when I think about Mom being afraid in her own home. Nevertheless, it’s my job to remain calm and to make sure she’s living in a safe environment while not enabling her confabulations. If I start giving into her paranoia, I won’t be able to accomplish that feat. I’ll drive myself to the brink over every episode and will be of no use to myself or to her.
Excerpt from the Book
“You are not alone.
Loss can be very isolating. However, I want you to know that you’re not alone — even when it feels that way.
Emerging feelings of isolation are often self-imposed because many have a tendency to push people away when they’re hurting. They may feel like a burden to others, if they appear to be weak and in need of help. The truth is that this is the time when you require a support network the most, and friends and family are usually more than willing to reach out a helping hand. The rest is up to you because you need to allow yourself to accept the offered help. Keep in mind that it’s your relationships with others that will provide the most assistance in coping with your situation.
When you keep all your emotions to yourself — tempered down and bottled up inside — you become a volcano that can literally explode at any moment. It’s beneficial to air your feelings because they may sound different and less overwhelming when expressed aloud vs. having them only roll around in your brain. I call this the bounce back element, which provides a reality check and allows you to receive feedback from others who can help you to see possible resolutions to your issues.
Before you started your personal journey of caregiving, you may have heard about the difficulties others encountered. Your mind may have absorbed this information generically, but it’s likely that you didn’t pay much attention to it or retain it. Now that it’s happening to you and your family, it’s brand new and front and center in your consciousness.
The enormity of the task in front of you can seem overwhelming, and you may not even know where to begin. Some of the best ways to learn about what this undertaking is going to entail are as follows: completing your due diligence on caregiving and the different types of dementia; talking to professionals; and communing in a support group with those in similar situations.
Remember, along with your feelings of isolation and fear, your loved one is also feeling isolated and scared. It’s probably going to be your job to allay these frightening emotions that can compound the effects of the disease.
Once your parent or other loved one has started the march towards dependence on you and others, it’s a journey where there’s no turning back. Even if they are in a stage where they’re not totally aware of what’s going on, they still probably know that a move out their own home means that they’re relinquishing their independence, which they know will never be recaptured. The uncertainty of what comes next in this scenario is a breeding ground for fear and agitated emotions.
Thus, for a smoother transition from independence to dependency, and in order to temper isolating and confusing feelings, start each day with a pledge to your parents that you’re there to support them through all of these changes and you will ensure their safety. If they’re able to maintain a calm demeanor, this will allow you to remain calm, too.
On this subject, Leon Brown offers the following words of wisdom: “Be patient. Life will offer you another chance as soon as you find calm within, for abundance is born out of calmness.”
Pick up a copy of author Ellen Gerst’s book, “A Guide for Caregivers of Aging Parents with Alzheimer’s: Words of Assistance, Comfort and Inspiration,” and let us know what your thoughts are on the story in the comments below.
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