You’ve received the news that someone you love has been diagnosed with Alzheimer’s disease or dementiaYou may feel numb, in shock, or unable to process what’s happening. Or, you may have seen the signs, and it’s a relief to finally have a medical diagnosis. Whichever is the case, you probably did not expect things to turn out this way. Feelings of grief and loss are filling you as you look forward to a future forever altered. As you grapple with the grief that an Alzheimer’s or dementia diagnosis brings, we hope that these words will bring you hope and understanding for the journey ahead.  

Remember that You Are Not Alone

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, you will be living your life “on purpose,” with meaning each and every day. 

Father with two adult sons laughing and enjoying time together

And even though you may feel alone on your journey, you aren’t. More than 6 million Americans are currently affected by Alzheimer’s. To care for them, more than 11 million U.S. family members and friends provide unpaid care. Their love, time, and attention help keep those affected by Alzheimer’s safe and their lives meaningful.  

Whether you are a direct caregiver, or you are a family member or friend without daily caregiving responsibilities, there are so many resources available. Read books or listen to audiobooks. Research online. Talk to your loved one’s doctor. Attend a support group. Grow a support network of friends and family who are willing to share the responsibility of caring for a loved one with Alzheimer’s. There’s so much out there to help if you take the time to look and engage.  

You Will Experience Grief

Alzheimer’s is going to take so much from your loved one, but the losses you will experience as a caregiver, friend, or family member are also significant. You may 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. In many cases, children and spouses have to act more like parentsIn so many ways, once that diagnosis is spoken, your expected future alters completely.  

Focus on hands, younger person holding older person's hand in a comforting way

If you’re feeling sad or depressed, don’t beat yourself up for how you’re feeling. With so much change, it’s natural to feel grief and sadness  

Recognize Your Own Symptoms of Grief

As you mourn, your grief may feel complicatedIn 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. Listen to your spirit and your own feelings and slow down to feel your inner pain. Only by facing the pain head-on will you be able to deal with it in a healthy way. 

As you come to grips with what you’re feeling, keep your eyes open for these common symptoms of grief:  

  • denial of the diagnosis or 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, aneven the person with Alzheimer’s 
  • feelings of anxiety or confusion 

Woman sitting at table, writing on notepad

Don’t Avoid Your Grief

Generally, we’ve been taught to avoid emotional pain. However, it’s only by embracing our 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. 

Take time to care for yourself, keep tabs on your emotions, and make time to actively mourn and express your internal feelings.  

Be Kind to Yourself

You are going through a lot and you deserve kindness— from others but also from yourself. Let go of any self-doubt you may feel. You are doing the best you can. Remember to eat nutritiously, get enough sleep, exercise regularly, and do things that help you relax and be at peace.  

Mother and adult daughter sitting on couch together, talking and lighthearted

Also, take time to celebrate, even the 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, feel good about the times when you’re able to offer your help and love. 

Ask for and Accept Help

While you may feel the need to shoulder everything on your own, you need and deserve ongoing love and support. Don’t expect yourself to do everything or to handle your grief alone. That’s too much for one person. You need to talk through what you’re experiencing with people you trust. You will also need help with chores at home, medical appointments, finances, and many other things. 

Ask your friends and family for their support and patience. Those who love and care for you truly want to help. Additionally, you can also phone the Alzheimer’s Disease Education and Referral Center at no charge (1-800-438-4380) or email them (adear@nia.nih.gov) 

Mature woman caring for her elderly father

Join Your Loved One

It can be tempting to write off people with an Alzheimer’s diagnosis. Instead, look your loved one in the eye, and talk to them directly. Join them where they are. Don’t get upset if your loved one makes mistakes (because they will). At times, your loved one will try hard to compensate for any cognitive losses. Join them in this effort. 

To allow your person to function as fully as possible, empower them and avoid limiting them. Encourage their involvement in support groups and consider joining one yourself. Talking to others can help you both navigate the maze of Alzheimer’s.  

Recognize that Respect and Love Endure

At times you may doubt, but remember, respect and love can endure throughout the progression of the disease. Alzheimer’s may take away a person’s memory, but it does not take away their soul. And even though your loved one may be confused and not even recognize you, at the heart, they still love you and appreciate the care you have given. 

Man and woman walking on a green path outside, arms around each other's waist

Do you believe that there is a soul that transcends the physical body? If you do, then you can find comfort in knowing that your loved one’s soul is eternal and the person you love lives on, unharmed by the disease. And that is where their love for you lives, too. 

Caring for a loved one with an Alzheimer’s  diagnosis is going to stretch you in ways you never expected or wanted. Just remember, you can do this. Take it one day at a time, one moment at a time. Embrace the good and process through the bad. You’ve got this.  

*Content based on a brochure by Dr. Alan Wolfelt. 

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