Helping Yourself When Someone You Care About Has Alzheimer’s

by Alan D. Wolfelt, Ph.D.

Someone you love has been diagnosed with Alzheimer’s disease or dementia. You probably did not expect things to turn out this way. Emotionally, you may be finding it hard to accept the diagnosis even as you are caught up in planning for your loved one’s present and future care. Of course, your own future is altered as well.

All of this may seem overwhelming, but we have a hopeful message for you—a message that comes from our experiences working with Alzheimer’s patients, families, and even our own parents:

You can and will survive this difficult time.

Navigating the treacherous and emotional journey of helping someone you love live with Alzheimer’s is not easy, but it does not mean that all is lost. By focusing on the abilities your loved one retains, you may still be able to have a meaningful relationship and share joy and love. And by fully mourning and making the most of your own days, despite the course of the disease (and, if you are the primary caregiver, within the confines of your caregiving role), you will be living your life “on purpose,” with meaning each and every day.

You are not alone

Today, about 5.3 million Americans are affected by Alzheimer’s. It is estimated that by the middle of this century, three times this number of Americans will have Alzheimer’s disease.

Who is caring for all these people? Currently, about 11 million U.S. family members and friends provide unpaid care for people with Alzheimer’s disease. Their love, time, and attention help keep those affected by Alzheimer’s safe and their lives meaningful.

Whether you are a direct caregiver to someone with Alzheimer’s or you are a family member or friend without daily caregiving responsibilities, this resource is for you.

You are experiencing loss, too

The progressive brain injury that occurs in Alzheimer’s slowly destroys function, both physically and mentally. It’s hard to watch as the losses accumulate and the person slowly loses awareness.

As the disease progresses, you also experience losses. You often lose the close personal relationship you had with the person you love. Your ability to do and enjoy the same things together is lost. Even the basis of the relationship may change. Children and spouses of people with Alzheimer’s have to act more like the parent. And, your expected future has now been altered.

When we lose someone we care about and are attached to, we naturally grieve. As you experience the many losses that are part of loving someone with Alzheimer’s, you too will grieve. But your grief may feel complicated. In some sense you need to mourn a person who is physically present but who is becoming more and more cognitively, emotionally, socially, and spiritually absent every day. Society, your friends, and even some of your family members may not understand this. Listen to your spirit and your own feelings and slow down to feel your inner pain.

Know the common symptoms of grief

Symptoms of grief can vary widely among those who love someone with Alzheimer’s, but common ones include:

– denial that the person you love is ill

– periods of helplessness, despair, and depression

– changes in appetite or sleeping patterns

– feelings of anger or frustration toward the person with Alzheimer’s

– withdrawal from social activities, friends, family, and even the person with Alzheimer’s

– feelings of anxiety or confusion

Especially if you are the primary caregiver, you may feel too busy and overwhelmed to recognize that you are grieving the slow loss of your loved one. Recognize that you are in grief and need to actively mourn, which means expressing your grief outside yourself.

Ask for help

You need and deserve ongoing love and support. You may also need help just getting through each day if you are a caregiver to someone with Alzheimer’s.

Don’t expect yourself to do everything for your loved one or to handle your grief alone. You may need to talk this through with others. You may also need help with chores at home, medical appointments, or finances. Take comfort in the thought that others care about you and are available to help.

Ask your friends and family for their support and patience. Those who love and care for you truly want to help. You just need to ask.

You can also phone the Alzheimer’s Disease Education and Referral Center at no charge: 1-800-438-4380. Or get help from them online at www.nia.gov/Alzheimer’s.

Be kind to yourself

You are going through a lot and you deserve kindness—from others but also from yourself. Let go any self-doubt you may feel. You are doing the best you can.

Celebrate even small successes. If you are the primary caregiver, say “Good job!” to yourself when you successfully get your loved one dressed with no emotional outbursts. If you are a friend or family member who does not have day-to-day caregiving responsibilities, pat yourself on the back whenever you reach out to offer your help and love.

Lean into your grief

Generally we have been taught that emotional pain is to be avoided, not embraced. However, it is only in moving toward pain and grief that we can heal our wounds.

Be wary if others are telling you how well you are doing with your “situation” or if you are not feeling much at all. Sometimes doing well means you are avoiding your pain, hiding your emotions, or experiencing some of the natural numbness that grief brings.

As Helen Keller once said, “The only way to the other side of something is through it.” Practice acknowledging and expressing your grief rather than trying to go around it or ignore its presence.

Create room for hope

As the person’s illness progresses and she changes, you may experience a loss of a companion and a relationship important to you. You may grieve for the “way she used to be.”

You may feel that tearfulness or sadness is welling up inside you. These sad feelings may be mixed with depression or fatigue. They may come and go, but they are a normal part of the experience of grief and the need to mourn.

Your sadness may not be understood by others, especially if the person who is ill still appears well. You may feel you should keep your feelings of sadness to yourself. Resist this urge. Let your sadness out. Cry when you feel like. Let your close family and friends know how you feel. Letting your sadness out will create room for hope.

Join your loved one

It can be tempting to write off people with Alzheimer’s. Instead, look your loved one in the eye, and talk to him directly. Join him where he is.

Don’t get upset if your loved one makes mistakes, because he will. But he will also try hard to compensate for his cognitive losses. Join him in this effort.

To allow him to function as fully as possible, empower him and avoid limiting him. Encourage his involvement in support groups, and consider joining one yourself. We can help each other, both people with dementia and their caregivers, to navigate the maze of Alzheimer’s. We must live for each day. Just because your loved one may forget it tomorrow doesn’t mean he didn’t live each moment today

Recognize that respect and love endure

Know that respect and love can endure throughout the progression of the disease. Remember that Alzheimer’s may take away a person’s memory, but it does not take away his soul. And even though he may be confused and not even recognize you, in his heart there is still love for you and for the care you have given him.

Do you believe that there is a soul that transcends the physical body? Many people believe that the brain is the control room of the physical body, but it is not the seat of the soul. Therefore that which is eternal and divine in the person you love lives on, unharmed by the disease. And that is where his love for you lives, too.