It has been long enough since Jim passed away that I feel I have a few tips for Do’s and Don’ts. There is no doubt I will have more in the coming days, months and years, but for now, these are some suggestions for caregivers and for those who care (or say they do) about caregivers.


Be present. Some people have just simply disappeared during the past year or so. For whatever reason. Leaving a caregiver without any explanation is much more damaging than you imagine. Yes, we notice. No, we don’t understand and yes, it hurts. I have a very good friend who would just come sit with me while I sat with Jim. She didn’t need me to ask, she didn’t need me to offer commentary. We often sat in silence and that was good enough. I had another friend who upon finding out Jim was at the end, didn’t ask if I needed her. She bought a plane ticket from her home in Colorado and flew to our home in Virginia. Got a hotel, got a rental car and showed up at our home. She organized food, shuttled the kids, took over when visitors stopped by. And then she went back home. And it was never about her and all the amazing stuff she was doing. She stayed in the background and was just a good friend.


Say “Let me know if you need anything.” I have no earthly idea what I need or when I will need it. In all fairness, I have offered up these same empty words. I have read articles that also remind us not to say this. And yet we all seem to. (Except for my friend in Colorado) If you have something to offer, do it. Otherwise, you more than likely will never get a call saying what is needed and you will be off the hook. If that was what you were hoping for, well, job done. If you really want to make a difference, show up and be present imp source.


Remember breakfast items when bringing food. We had some delicious lunches and dinners, but very few brought by something for first thing in the morning. If you are wanting to contribute in the meal category, don’t forget the most important one of the day. For that matter, I am still thankful for those that brought wine and tequila too. There is something terribly sad about having to purchase your own alcohol to drown your sorrows away during an extremely sad time.


Jump on the bandwagon. If you were too busy to be around for the past 4 years while our family was struggling, do not show up expecting to ask a million questions and suddenly all is forgiven. Maybe you grew a conscious. Good for you. Now, wait your turn to find out all the morbid details that seem to be of interest more than trying to help us work through our grief. Sorry, it isn’t about you right now.


Talk about the person who is sick, deceased, dying, whatever the appropriate word is. Nothing is lonelier for a caregiver than for the person they are grieving and missing to be wiped away from all conversations and life. They exist. They existed. No need to drone on and on, but there is also no need to completely act as if you didn’t even know them. Some of the best notes and comments I received were from people who simply told me something about Jim from their perspective. Some were going to miss seeing him walk the dog, a few had worked with him and commented on what an exemplary soldier and person he was and some simply said they didn’t know him well but wished they had. I couldn’t help but grasp desperately to those people and long for more. Somehow it made him real, made my loss real.


Tell me you know how I feel. Unless you lost Jim while raising two young children you don’t. Plain and simple. You don’t.


Be Patient. I am not myself, and I won’t be for a very long time. I haven’t been since the day we figured out something was wrong. I have morphed into a person that is struggling to stay afloat. I am working my way back, but I will never be who I was, so now I am figuring out who I am. Help me and you will be rewarded.


Stop being yourself around me. You can still complain about your husband and talk about your job and your kids and where you are going on vacation. See the “Do” above. I may not be as excited as I once was for you, but I still care and I still want to know about your world. I am just having a hard time living in mine.


Remember the yard and house. I was so very blessed with some wonderful friends and neighbors who brought lots of food, flowers and love to our home during a time is was greatly needed. But helping with our yard work, laundry and housework really took a load off of my shoulders. And don’t forget, if you are reading this and it has been a while after someone passed away, it is NEVER too late to show up with flowers, a weed whacker or a bottle of wine. You are always able to redeem yourself.


Stop inviting me or my children to your social gatherings. I know I have disappeared and probably will turn you down again, but I will eventually come back around. Don’t give up on us. And if I leave early or don’t seem like I am having a good time, don’t take it personally. It isn’t you or your party. It is me. And my sadness. I’m at least trying. Give me credit for showing up. Next time I might actually stay a little while and laugh a little bit.


Offer to take my kids when you are taking your kids. Mine don’t have a Dad at home anymore. They don’t have that male role model to watch, observe and learn from. They will benefit greatly by coming over to your family dinner, hanging with your family at a show or going on a hike or bike ride or trip to the museum or weekend away…. Plus, it will give them a break from me and me a break from them. It hurts my soul when I read all of the statistics that discuss how horrible it is to grow up without a Dad or in a single parent home. Having “surrogate ” families or Dads will be beneficial in the long run…I hope.

7 thoughts on “Do’s and Don’ts (for friends and family of caregivers)

  • Cindy HIggins

    Thank you. You are often on my mind and I pray for you and your family when I think if you. I am so thankful for your words. It helps to know that I am not alone.

  • Betsy Ehnstrom

    Your words are so helpful for people thank you for posting this. i think of you and your family all the time.

  • Deane Johnson

    Dear Karen,
    I don’t know what you went through with early onset Alzheimer’s with Jim, two children, and holding down a job.
    I do know the grief of losing ones husband, lover, and soul mate. I am attempting to find a life without Joe.

    I have written a sequel to my book,” I’ll Be Seeing You”. The book titled “Steel Love” will be available on I’ll be seeing you documented seven years as a caregiver in the foxhole of Alzheimer’s. Steel Love documents Joe’s last five years living away watching him go through the last stages of Alzheimer’s.
    Prayers for you all.

  • Ann

    Everybody in my mom in law’s life disappeared, except me and her other daughter in law. Our husbands work out of town, and are gone for weeks at a time. But they are here, during their off time. Her daughter lives 500 miles away, and we never hear from her. Not even a phone call. But she will put on a show of grief when her mom dies. MIL’s church dropped out of sight. This is where all her friends were. Our friends disappeared. Occasionally, we will get that “let me know if you need anything” call. We have one relative that will come any time we need her, as long as we pay.

  • Carol Eden

    Thanks for these tips. I had never thought about taking breakfast foods. What a great idea!
    I often take a meal but also take disposable plates, cups, serving ware, soft drinks, coffee, paper towels, garbage bags and even toilet paper. When you have a death in the family you often have additional family members staying with you and you don’t need to worry about going to the store for these things.

  • Joanne Hoffmaster

    I just finished five years with my mom who just recently passed away from Alzheimer’s . Your suggestions were fantastic and definitely agree with breakfast items yardwork etc. something I might add is that being an only child people would say well “I’ll come visit your mom when are you going to be there .” Really? If you would come and visit and let me know maybe I might be able to go home and take a nap or just veg out .
    I think about you and your family and know this is a long journey you’ve been through . Wishing you peace and joy in the future

  • Kathie Snyder

    This is a fabulous compilation of advice for those who know someone who is caring for a loved one with dementia, or any other issue or disease, and/or for someone who has just lost a loved one – particularly a spouse. Thank you so much for putting this together. I plan to share it with everyone I can!

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