14 Things Alzheimer's Caregivers Want You to Know

Few can relate to the important responsibility of caring for a spouse, parent, child or other loved one have experiences unless they’ve done it themselves — and those who care for relatives with Alzheimer’s disease know firsthand the struggles and triumphs of caregiving.

• The Mighty’s Caregiving Toolkit

We collaborated with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our Facebook communities what they wish people knew about caring for a relative with Alzheimer’s disease. They revealed some of their biggest challenges as they navigate this often confusing time, as well as their advice for others who are just beginning the journey. Above all, caregiving is about support — both for their relatives and for themselves as caregivers.

Here’s what they told us:

1. “I cared for my daddy, and it’s a lot of patience, love and many old stories he could relate to… many pictures to look at together, music he can sing to, and the love given by many.”

2. “It is important to have a support system. Taking care of your own health is very important because being a caregiver to a love one can be emotional, physical and mentally draining… You will struggle with the truth, your faith, you will be angry, but it’s OK to feel this way, and for this reason it’s important to have your own support system!”

3. “It’s a 24-hour, day/night job. It’s a year-after-year commitment. The hardest job you’ll ever have. It can last for a decade, and… you will be changed forever!”

4. “After the initial shock of the diagnosis, you have to change roles of being the loving caring husband to being the caring loving husband. Your world is turned upside down but while you work on putting it back together, you have to comfort your spouse telling them that everything will be OK. Then you learn to live in the now and not dwell on the future. Your love for your spouse changes, it becomes stronger and more sensitive. All you took for granted has been erased.”

5. “Remember all the times they read you the same story, sang the same song over and over just to see you smile… Do that for them. Never scold… Sit with them all night, hold their hand, climb in bed and hold them. Anything an every thing to bring a smile to their face, a light in their eyes, peace in their heart. Love them as they loved you.”

6. “Each person is different. Try what works and take time to listen to stories or music. Patience and love because some day you will miss them but will always be in your heart.”

7. “This disease is scary for them. They know something is not right, they feel it but cannot name it, so be kind, do not take what they say personally. This is one of the hardest things to accept and do.”

8. “As a caregiver you need to enter their world. They say ‘green,’ you agree; they say it’s cold at 90 degrees out, agree. Don’t expect them to change. You need to change! When they tell you something, listen to their every word like it’s the first time you’ve heard it, even if it’s the hundredth time. Laugh and make them laugh! It’s their world we need to enter, not the other way around.”

9. “Be prepared for people to leave. Many won’t be able to accept the change of someone who was so vibrant and so interactive. The person with Alzheimer’s may not notice the change from their friends and family, but you sure will. It can be heartbreaking.”

10. “A lot of the time a caregiver may feel guilty for being snappy or in a bad mood because it is physically and mentally draining to care for someone with Alzheimer’s. Take time out for yourself, and you are not selfish if you do this because it’s OK to have a life outside of taking care of a loved one with this illness.”

11. “The primary piece of advice I give to caregivers is to look into nursing homes early. Don’t wait until you are desperate. Often there are waiting lists so it’s good to get on that list before you need it. This will improve you chances of getting the nursing home you want. It’s a hard step to take. It feels like a betrayal.”

12. “One of the hardest things for me is that I really can’t have a ‘bad’ day. My husband feels that negativity, and it makes for a much rougher day.”

13. “It’s an honor to care for my mother. It may be frustrating and heartbreaking at times. She took care of me, now it’s my time. Wouldn’t want it any other way.”

14. “One of the hardest things you’ll ever do. A lot of love and shared memories. Watching movies you’ve watched a dozen times. Physically and emotionally draining. You’re lucky if you have any help at all. The best part is helping someone who otherwise wouldn’t be able to help themselves. Also one of the most rewarding experiences one can have. The love you share is beyond words. At times it can be so lonely, but at the end of the day, I tried to be there every day for my father (1931-2013), and he was there for me.”