25 Lessons Learned from Alzheimer’s Caregivers

We are taught important life lessons every day, but the most memorable seem to come from those we love the most. Caring for a loved one with Alzheimer’s disease teaches us many great unexpected lessons — both as caregivers and family members — that leave a lasting impression on our lives.25 Lessons Learned from Alzheimer's Caregivers

We asked caregivers on our Facebook page what some of the most important lessons learned from loved ones with Alzheimer’s were. This is what they shared:

Top 25 Lessons Learned from Alzheimer’s Caregivers

1. That you need to make time to sit with your loved one and have a cup of tea and a conversation, even if limited. All these things become precious memories. I would give anything to have another precious moment with my Mom. — Marcia D.

2. Not to disagree with them. If your 88-year-old mother says her mom is alive and she just talked with her on the phone, agree and let it go. Try to have more patience. Yes, they are going to ask the same questions over and over. Expect that and roll with the punches. — Mary L.

3. My mother used to tell me that her mother came to visit, and that they went to the apple orchard and picked apples, and then went to get a malt. I would just say, “That sounds wonderful. I hope you had a nice day with your mother.” She would reply, “Oh, yes, we had a lovely day.” Who cares that it didn’t really happen? If it made her happy, great! — Dani P.

4. To love unconditionally, that’s what my Mom taught me. Even though she sometimes had no clue who I was, she never stopped loving me. It was an honor to be her daughter and caregiver. — Laura J.

5. That the things you regret are the things you never did. — Rachelle M.

6. That this is truly “the best of times and the worst of times.” Not a day goes by that I don’t wish I had both of them back, whole and healthy. Though, in my heart I know their passing was a blessing. Five years has passed and my husband and I still miss our moms. — Elizabeth T.

7. That it is important to stay in touch with your loved ones. Alzheimer’s doesn’t discriminate and the length of time that people with the disease have always varies. — Roxy L.

8. That the heart remembers long after the mind forgets. — Judy F.

9. That it is important to enjoy life every day. Don’t worry about what you don’t have and be sure to appreciate what you do. — Clifton P.

10. That it is important to enjoy your youth. — Kristin D.

11. That people are more important than “things.” — Carla S.

12. That it is important to enjoy the memories, and not argue or stress, because one day you’ll want those days back again! — Nita B.

13. That you should not press them to remember things and that you shouldn’t take it personally if they don’t remember you. Keep spending time with them with plenty of hugs. — Ann E.

14. That they need you to stay with them for the long haul. — Tammie F.

15. That they still need our love and compassion and need be treated with respect. — Elizabeth S.

16. Even though they may ask the same question numerous times, know that it’s important to answer it like it’s the first time they are asking. — Beverly E.

17. That you can still interact meaningfully with the part of them that is still there. — Deb R.

18. To allow them to live in the moment. One day in their mind they may be a child again, looking for their own mom. The next, they may be a young parent themselves, worried about their child. Allow them that, and answer their questions as best you can to put their mind at ease in that moment. — Lisa F.

19. To live your life and enjoy it to the fullest every day! — Tracy Raymond

20. That you should appreciate the good times you have with your loved one, as they are today and every day. Love them through the confusion. — Michelle P.

21. To always love them, laugh with them, touch them and hold their hand. — Stephany R.

22. To think of the love, patience and the wonderful support of family… that keeps me going for my husband with Alzheimer’s. — Nancy N.

23. Not to take what they say personally. They are sick and don’t really mean it. — Sylvia Z.

24. To help them live their life truth and create moments of joy for them. — Pamela R.

25. “They are good people… and maybe they are just having a bad day, honey.” These are two things from my Mama that I learned the most from. — Toni T.

Above all, remember that you are not alone on this caregiving journey. For additional help, you can reach out to our community, use our resources at Alzheimers.net, or contact the Alzheimer’s Association.

Do you have any lessons that you’ve learned from loved ones with Alzheimer’s that we’ve missed? Add to the discussion by sharing what lessons you’ve learned in the comments below.

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Please leave your thoughts and comments

  • Richard

    My wife has Alzheimer’s, about 4 years in. Most of the 25 items are so familiar. I could have posted many them. For the caregiver it’s an ongoing process of patience, learning, not disagreeing or correcting, love and prayers for strength. Support and involvement of family is so important.

    • Caitlin Burm

      I completely agree with you Richard. Patience, learning and love are key! Thank you for sharing your story.

  • Patricia M.

    My mother had a very successful career as a writer and journalist, so she was always a career woman. But now at this stage of life, it is so gratifying to be able to express physical affection towards her. To cuddle up and tell her how much we love her, and she is accepting of this now.
    These are the hidden gifts of caregiving. The hugs and kisses that make the day worthwhile!

    Boston area

    • Caitlin Burm

      Thank you for sharing that, Patricia. You are so right. I’ve found similar gifts from caregiving as well, when caring for my grandmother with Alzheimer’s. It’s so great to know that there are others who understand that the little things, like hugs and kisses, count the most during this time.

  • Melissa

    This is all nice, however, there’s an alternate side to Alzheimers/dementia – that of anger and violence. My mother suffers from a form of dementia, and is growing worse as the years go on. I am her only child that is nearby – all my siblings are out of state. I am the Power of Attorney and caretaker of her and her estate, although to date, she still lives alone, now with daily visits from a elder care company. She continues to fabricate accusations against me for stealing from her, which isn’t true; she’s changed the locks on the doors, so I can’t get in the house under any circumstances; she plots things out behind my back that no way is she capable to doing, but she has a “phone and a pen!” She has physically attacked me numerous times; she is irrational when it comes to me, and whenever one of my siblings mentions my name, she turns instantly stony and angry – accusing them of “being on HER side.” There’s no “sides.” If they disagree with her or try to steer her differently than what she wants, they are attacked. We are all unified in our care and concern for mom – but I’m the bad guy. Oddly, my father trusted me the most – and entrusted her care and the estate to me to take care of because I was close, because I was capable, because I was deeply honest and trustworthy, because I can make good decisions. Now, 7 years later my mother thinks I’m the embodiment of evil. So, hugs and kisses? I get slugs and hisses. It’s not easy – but it is worse when this person you’re supposed to care for becomes a dragon.

    • Caitlin Burm

      Hi Melissa,

      I’m so sorry you are having to go through this. It can be difficult to communicate with loved ones who have Alzheimer’s and dementia and unfortunately, it is common to experience Alzheimer’s aggression. I have found a couple of articles that we have on our website that may offer suggestions that could be useful to you. The first one explains Alzheimer’s aggression and some of the most common behaviors and feelings surrounding it. http://www.aplaceformom.com/senior-care-resources/articles/alzheimers-aggression

      The second article shares tips on communicating with someone who has dementia. http://www.aplaceformom.com/blog/communication-with-a-loved-one-with-dementia/.

      I hope these help and I wish you and your family the best.

    • mary

      my dad became mean and nasty, we got him on welbutrin (its an antidepressant for elderly) made all the difference in the world. He became his sweet docile self again. have you tried any anti depressants or anti anxiety meds. should be one that works.

    • Cindy Michutka

      I am so sorry you are going thru this. I am going thru the same thing with my mother. Both my brothers live out of town. My father made me promise when he was dying to take care of my mom and I have kept my promise. But now it is really hard. She accuses my kids of stealing and is very mean with me. I feel lost she was my best friend now she hates me. I am building a room onto her house so I can be there on a day to day basics. She insist on driving even thou cannot. Just don’t know what to do I love her and want the best for her. I can’t afford to quit work and don’t know what to do.

  • Syl

    I have lost my grandmother, my mother, my sister and both of my brothers to this disease. It is one of the saddest diseases…..because you lose them before they pass away. My oldest brother probably had it the longest…he had it about 14 years. I am now 72 and so far no signs of Alzheimers……and I thank God every day and wonder ….why me?

  • Janet Bryan

    I felt closer to my Mum through her years battling Alzheimers than at any other time. We only had each other…my Dad was gone; I have no siblings. It was just Mum and me. Once I realized how to deal with the disease, I can say that it was the worst of times but it was also the best of times. I dealt with the up’s and down’s through humour ~ it kept me sane

  • Amy Muse

    My Dads symptoms started at 58 and now, at 60 he has been diagnosed with Lewy Body dementia. When he’s visiting our home and a friend drops by to see me, he tells her often that “he doesn’t have anybody”. Meaning his friends do not come see him. It’s really sad that once someone becomes ill, and not able to cut up and talk about things like they used to, most people in their lives just disappear. Dad still drinks coffee on his front porch with or without his buddies, and he still knows how and when to laugh. He doesn’t understand why his “friends” aren’t his friends anymore. It’s heartbreaking.

  • Xantha Alston

    My boss’ is a caregiver, I see the stress on her face, and since I’m a “temp” and have been here for only a short period of time, I listen and she talks about her struggles. I so admire and respect her, and my heart wants to help, I’m the best secretary I can be for her, but being a temp, I’m limited, I want to do more, something personal for her (my boss) but I don’t know what. Any suggestions? Her mother has a caregiver during the day, and at night my boss stays over her house? What can I do to help? Please give me advice. Thanks A Personal Paralegal

    • Karen Clements

      You’re an angel for listening, and for respecting her for all she is doing. Thank you for that – I know I have doubts every day that I’m not doing enough, or not doing the right thing. How great that she has you to support her (she needs it, too!!).

  • GoodPhysicianBlog.com

    Hi, I’m a family physician and I am impressed with this list. I see/treat patients and their families (and other caregivers) that struggle with Alzheimer’s disease on a daily basis. I have just written a blog post at http://www.goodphysicianblog.com that compliments this list. Maybe it will help someone else who’s looking for more information.

    • caitlinburm

      Thank you for sharing!

  • Nancy L

    I was caregiver for my parents for about six years. I was durable power of attorney for their healthcare at that time. I noticed my father having some short-term memory issues, plus his personality was changing. He developed an absolute hatred from me and started complaining about me to everyone including my brothers and my sister. I thought his complaints were absurd, so I just ignored them and did not expect anyone else to give them credence either. He would even turn thing that I was doing to help into something terrible.

    For example, I was a marketing director and worked 70 hours a week. I stayed with my parents and took over all the grocery shopping, lawn care, cooking, cleaning, laundry, etc. I was literally working 100 hours per week. I asked my father if he could help with the dishes. Not only did he refuse, but he intentionally left huge messes and piles of dishes for me when I got home. I then put all the dishes and silverware away and bought paper places and plastic silverware. He then called up all my family and raised a big fuss. When I got calls from family members, they had the attitude that I had done something terrible, and I should just be glad to do the dishes on top of everything else. “Give Dad his silverware back.”

    The complaints and the fuss when on and on, over and over.

    It surprised me that family bought into a lot of his complaints. As I realized that I could not do anything right from his perspective, and it was a no-pay thankless job, decided to leave the state and let my sister take a turn with that fun.

    I started having him tested for Alzheimers through the VA, which was terribly slow. Before they could finish the testing, the power of attorney was switched over to my sister, and she put a stop to the testing. Why? Because her husband (who is no where near a health care professional) had a nice conversation with him and thought he seemed normal. The rest of my family is still in denial about his condition.

    My father actually did quite a bit of damage to my family relations. I would just love to hear your thoughts friends, I feel I have been traumatized by all of this…

  • corecubed

    Great tips! Some additional resources for Alzheimer’s caregivers can be found here: http://carebyangels.com/resources/alzheimers-information-2/

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