Loving someone who has Alzheimer’s disease is hard, exhausting, and grief-inducing. People who have lost loved ones to Alzheimer’s report that they have to lose their dear one twice: once when the memory loss becomes all-consuming and the mind dies away, and then again when death takes the body. Watching someone you care about forget everything and everyone important in their lives, while also often becoming depressed and angry, is devastating.
Many people move through the stages of grief when they find out their loved one has been diagnosed with Alzheimer’s disease. These stages are:
- Denial – hoping the person isn’t ill, convincing yourself that erratic behavior is normal and not concerning, expecting that the person will get better any day. Once it’s clear that the person IS sick and not getting better, people usually move onto step two.
- Anger – being frustrated with the person who is sick, refusing to take care of them, resenting family members who can’t or won’t help provide care, feeling abandoned.
- Guilt – wondering if you did something to cause this, regretting how you handled the initial diagnosis, feeling guilty for taking a needed rest, regretting things about your relationship with the person before their diagnosis, continually thinking “I should have…”
- Sadness – feeling despair or depression, withdrawing from normal social activities, not dealing with your emotions
- Acceptance – realizing the diagnosis is here to stay and this is what your new normal looks like, finding meaning in caring for someone who won’t get better, enjoying being with the person, learning from the grief.
All of these stages are normal and common for those learning of a loved one getting sick. So how do you cope when you are losing someone, or have already lost someone, to Alzheimer’s disease or dementia? What can you do to make the transition easier, even though we know it will never be easy? Here are some suggestions:
- Feel your feelings: Let yourself feel the myriad of emotions that come with having a loved one diagnosed with a terminal illness. It’s okay to feel sad or angry or frustrated, and to feel overwhelming love at the same time. The important thing is to not suppress or deny the emotions as they come.
- Remember that you are going to feel loss more than once in this process. While this is true with many illnesses, it’s especially true with Alzheimer’s because you lose the mind first and then the body.
- Recognize your own grieving process. People don’t grieve in the same way. Judging someone for how they grieve is never going to be satisfying for anyone. Our histories and life circumstances play a role in how and when we grieve, and we must learn to accept the way we grieve as just as okay as the way someone else grieves.
- Talk with someone. This may be a trusted friend, a sibling, a parent, or a therapist, but it’s important to have someone you can open up to and process the things you are feeling with. Grief and support groups can also be helpful to process with people who are experiencing the same thing as you.
- Realize that some people may not understand your grief. People who haven’t walked this road don’t know what it’s like, and they may say things unintentionally that are hurtful. They may not realize it’s possible to deeply grieve someone who hasn’t died yet.
- Don’t forget to take care of yourself. Caregivers often start to give up their normal enjoyable daily activities out of guilt or time or sadness. Make sure you are taking the time in your week to go out with friends, read a book, or take a walk. Exercise and eat well. Taking care of yourself is just as important as caring for your loved one.
Remember that you are not alone in this. Find someone to talk to, take a walk in the sunshine, and hold the hand of the person you love so very much who can no longer be the person you wish they could be.