There are many things to be struck by whenever I meet a daughter, son, spouse or friend of someone with Alzheimer’s.
“Strong”, “compassionate”, “patient” – these words describe but never capture the essence of the person in front of me.
And as we talk, I’m invited into their unique experience of the illness. They share the good days with me and offer up the parts they wouldn’t change for anything.
But something else emerges too. It’s a sense of being lost – unable to tell any more where their needs begin and the needs of the person they are caring for, end.
I’ve heard this sentiment so often that I began to take notice of those who didn’t seem to express this feeling. I wondered what was working for them and how I might offer those insights to other caregivers.
After a lot of listening, I think there are four main essential elements – keys if you will – to not losing yourself in the Sea of Alzheimer’s.
How to Care for Someone with Alzheimer’s Without Losing Yourself
Key #1: Emotional Support
If I were to ask you to tell me who you could turn to on a really bad day, your answer to that question would say a lot about how much emotional support you have.
We all need a soft place to fall now and again, but when you’re caring for someone with Alzheimer’s, this is especially true. If you’re not sure what I mean by emotional support, chances are that you’re not getting enough and this can most definitely bring on the lost feeling.
To be clear, I am talking about having people around you who can ease the caregiving burden – either by lending you a hand, an ear, or enabling you to do something that would otherwise be impossible.
Emotional support can come from friends, family, and if you work, even your boss. But it must come from somewhere if you are to stay afloat. Ideally, it comes from multiple places.
I’ve spent whole sessions strategizing with caregivers whose families have designated them as the “it” person when it comes to caregiving. This isn’t right, and if it continues, it could end up taking you down.
As much as we may wish it to be true, no one person can always be everything.
Key # 2: A willingness to make yourself a priority
You may have heard that on an airplane – as in caregiving – it’s best to put the oxygen mask on yourself before you attempt to assist someone else.
What I’m speaking of when I say having a willingness to make yourself a priority is more than just caring about yourself – it’s an inner sense that you matter, that you deserve to be healthy and whole just as much as the person you’re caring for.
Think about that for a moment…
If you are providing care to a loved one, then you clearly believe that his or her well-being matters. But what about you. What do you deserve?
Caregivers who are able to keep their heads above water in the sea of Alzheimer’s seem, at least to me, to possess this inner sense of responsibility to themselves.
Even though they may not have done something purely for them in a long time, they know they should, and can feel when they really need to do so. That’s the key.
Key # 3: Information about — and access to — respite
When most people think of respite they think of having a family member or friend, maybe even a home attendant come in for a few hours a week so that they can run some errands or catch up on sleep.
However, there is another kind of respite that I think may be even more beneficial to both you and the person with Alzheimer’s – it’s called group respite.
The most common form of group respite is an Adult Day Program and many communities have them.
Adult Day Programs fall into three categories – social model, medical model, and social/medical model.
The general rule of thumb is that programs that are a medical model or a social/medical model may be covered by Medicaid/Medi-Cal, Veteran’s Benefits, and Long-Term Care Insurance, while a program that is strictly a social model may only be accessible if you can pay privately.
If you do pay privately, you can expect the cost to be about as much as you would pay a home attendant for a few hours.
So what are the benefits of an Adult Day Program?
There are many. Activities are structured and designed to promote socialization and mental stimulation. They’re also adaptable to people at every stage of Alzheimer’s which means that if your loved one enjoys the program, he or she can continue attending even as the illness progresses.
Meals, transportation, help with personal care, medication management – these services are all a part of the social/medical model which I think is the most appropriate for those with Alzheimer’s, particularly in the early and middle stages.
Another benefit is the routine that gets established at home. Getting dressed, eating breakfast, and getting out of the house are all activities that the person most likely did before the illness, but may have done less often as the disease progressed. Reestablishing these habits is a good thing because habits can often replace memory in someone with Alzheimer’s.
As I’m writing this I’m reminded of a man I knew who attended an Adult Day Program three days per week when he was in the disease’s middle stage. His wife was amazed at how much more cooperative he was about bathing and dressing than he had been before attending the program.
“Why do you think that is?” I asked.
“I think his mind is telling him he is going to work, so I go along with him. I tell him, ‘It’s time to get ready for work.’ When he returns in the afternoon I know he doesn’t remember exactly what he’s been doing all those hours, but I think he feels that he did something worthwhile. I never expected that when I signed him up.”
In addition to the ways in which an Adult Day Program is beneficial for the person with Alzheimer’s, there are also benefits for the family member who does the caregiving. The one I hear about most from caregivers is the opportunity to be at home alone – a true rarity for caregivers and an essential way to recharge if you ask me.
Key #4: Training to understand the behaviors that are common to Alzheimer’s and how to cope with them
Alzheimer’s disease is complex and coping with the behaviors it can produce is often the most difficult part for family members.
If there’s a silver lining to be found here it’s that much is known about what works and doesn’t when it comes to interacting with someone with Alzheimer’s. What’s more, many organizations offer trainings to family caregivers so that they can learn the dos and don’ts.
The most reputable of these organizations in my opinion is the Alzheimer’s Association. The trainings are free, available at every chapter and can truly make a difference.