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10 Rules for Being a Caregiver’s Friend

 

Don’t say, “What can I do to help?” -  I need a lot of help; the list is unbearable. But my pride gets in the way of asking. I don’t want you to feel put out. If you really want to help, be specific. Ask if you could do the grocery shopping, or if you can do the yard work. Better yet, just tell me you’re going to do it.

 

Remember me before I was a caregiver – Do you remember me before my mom was dying? Ask me about something other than how my mom is doing. I may not have seen that movie, but you asking makes me feel like there is still a world happening outside of caregiving. Remember that I love long runs, great shoes, and terrible jokes. Help me I remember I love them, too.

 

Understand I may decline an invitation (but still invite me) – I know I seem to have dropped off the earth since my Dad moved in with us. I know I have declined several invitations to get-togethers, happy hours, birthday parties, and even weddings. I want to be there, but sometimes Dad is having a bad day. Sometimes I’m just too tired. Please don’t stop including me. I need to know I am wanted.

 

Don’t try to fix my situation – When I need something done, I ask my husband. He’s a good fixer. When I need someone to listen, well, that’s not my husband. That’s why I have you, friend. You’ve always been that for me. Don’t stop now. I need a listener as much as I need a fixer.

 

Let me know you think of me – Many days I feel forgotten by the world. Please don’t you forget me, too. Send me a text, shoot me an email, have flowers sent just because. Drop by with a sandwich or coffee (or even wine).

 

Follow my lead – There are times I need to talk about my mom and how she’s doing. There are times I need to forget about my parents’ numerous doctor appointments, mountain of prescription bottles, new incontinence, bursts of rage, or never-ending crying. Sometimes I just need to be quiet and know that you’re there with me.

 

Don’t judge me – The house is often a mess. I’m often a mess. While you’re trying to find someone to housesit while you’re on vacation, I’m trying to figure out when I last left the house. It’s been 9,000 miles since my car had an oil change and I don’t go anywhere. I’m not sure the last time I was in the shower longer than 5 minutes. I know it’s all a mess, but pretend you don’t see it so I can pretend it’s not that bad.

 

Make me laugh – I spend so much time crying I forget how it feels to laugh. I long for those times when my cheeks and belly hurt from laughing. Can we have one of those times? Please.

 

Surprise me now and again – I don’t get many surprises, at least not the good kind. See # 5 for ideas.

 

Don’t pity me – This is a difficult time in my life, but it is also what I have chosen. There are moments of joy and delight (no matter how bleak a picture I describe). Don’t feel sorry for me. If you’re lucky, you’ll care for your parents someday, too.

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Thoughts and stories from others
  1. June 1, 2015 at 4:40 am | Posted by Catherine

    This is what i really love but i don't see it in my country. (Uganda). Please help me connect my dream . Thank you.

    Reply

  2. March 17, 2015 at 10:58 pm | Posted by Don Siedenburg

    My wife had Alzheimer's Disease about five or six years before I had to put her in a nursing home. She went in at 88 years of age with a Health Care Directive asking that when she was diagnosed with a severe brain disease she no longer wanted any kind of medical treatment. The nursing home did not honor her request and Medicare/Medicaid did nothing about it. Over the two years of her stay they billed Medicare for 515 unnecessary Physical Therapy sessions ($15,000.00) and Hospice Care for 302 days. ($55,387.00) You may have wondered why Medicare and Medicaid are going broke, along will adding extra years of suffering for our Senior Citizens.

    Reply

  3. March 17, 2015 at 9:12 pm | Posted by Wanda Pitts

    I can relate to all these tips at different times.. Caregiving is a process and when the loved one passes there is a hole in your soul because a little of you dies each day with them. The second time is no easier than the first time, but the first time has helped me to be a little wiser until, of course, I forget to do what I said I wouldn't do again....it is a difficult life..but it is chosen and it is the right thing to do...it is a season and it will pass...with pleasant memories..forget the bad and remember the good times.

    Reply

  4. March 17, 2015 at 5:27 pm | Posted by Deedee

    I feel I lost a lot of friends since I was/am out of town so much and people just didn't/don't want to deal with my sadness and grief as I slowly lose my aging parents or other loved ones. This just adds to my loss and grief. Many people just don't know how to be compassionate. That is their loss.

    Reply

  5. March 17, 2015 at 4:16 pm | Posted by Stephanie

    My husband is 70, I am 60, and we take care of his 87 yr. old step father. NO body else in the family cares how we feel about anything, we are just expected to do it. We both still work full time too. Seniors taking care of seniors, so hard. No retirement in sight. : (

    Reply

  6. March 17, 2015 at 3:23 pm | Posted by Martha

    When I was a caregiver for my husband, with his early on-set Alzheimer's, many friends were understanding and kept in touch even if it was a quick phone call or E-mail. But some "friends" disappeared totally out of our lives, as if they had fallen off the face of the earth! Maybe they thought it was contagious?! A text, phone call or E-mail would have meant sooooo much! Also, I would hear about parties and gatherings; we were not invited and would not have been able to go if we had been! But to know an invitation had been extended would have been comforting. I did not need people to feel sorry for us. I just needed the moral support!

    Reply

  7. March 16, 2015 at 2:06 am | Posted by Donna

    Another suggestion, please let me vent! When I tell you about my loved one's difficult behavior please don't say things like "you may act that way too when you are her age". I am not abusing my loved one, quiet the opposite, even though she may not be totally responsible I live with her verbal and emotional abuse daily. One of my greatest fears is acting like that and becoming a burden to my own children. Telling me that in the event I survive this caregiving experience I can look forward to acting the same is not a comfort.

    Reply

  8. March 6, 2015 at 7:30 pm | Posted by Linda

    This is invaluable. Number one really hit home. When my husband became a quadriplegic, after 36 years of marriage, I found myself in a place so unfamiliar I felt as if I was in a different dimension. So many well meaning friends, and neighbors and acquaintances would say, if you need anything just call me. It is true, the list is overwhelming. How do I even figure out what I need most? But when my dear friend, and then boss, said, " WHAT" can I do for you? It sounded so different. I was being asked something, so I had to answer, "Can you help me figure out a ramp for the house for when my husband comes home from the hospital?" He came home 6 months later, and she and her husband, son and friend built his ramp. The way she asked "What" can I do instead of "if" you need anything...made me feel as if she really meant it. It allowed me to put my pride aside. She taught me such a valuable lesson. I now, always say "What" can I do for you, when someone is in need. I always get an answer.

    Reply

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