As a caregiver, what helps you the most?

The hardest thing for me is, family and friends don’t understand. They don’t have a clue. Makes you feel very isolated. Taking a walk when the weather cooperates helps me a lot. My faith is a priority. Lots of praying. I struggle with the hopelessness sometimes. Anything out away from the house is good, grocery shopping, hair apptment, etc. Sometimes just letting myself take a long shower. Yes here we are on this journey that we didn’t choose.

I agree. Walking is also important for me, especially with our dog because it gets me out whether I want to or not. I also find myself going shopping just to get away and do something for myself, but then I often have to return what I bought. Friends and family who try to understand are rare. Everyone has their own life and problems. I try to remember that everyone else is struggling in their own way, so I don’t get jealous and mad of all they can do. I am tired and “weighed down” by the responsibilities I feel, and the Jekyl and Hyde responses I get. We must support each other.

I am also sooo tired of the Jekyl and Hyde responses from so called friends. One of them even went out of her way, gifted me a book by Oprah Winfrey, "Build the Life You Want - the art of being happier". No offense to Oprah Winfrey, but I gave the book straight away to Goodwill without reading it. The person who gifted me the book is hardly my "friend" anymore. Perhaps I'm too sensitive, I felt insulted, I really didn't need her to give me a book about how to build the life I want and how to be happier.
Doing something for myself and by myself daily is important, such as walking, praying, grocery shopping, even just for half an hour. But lately I'm so stuck with hopelessness.
I'm sending prayers to all of you, praying for your own health!

@naturalebyjas My first thought when I read this was "If I just had the time to read this, I WOULD be happier." LOL Friends who do this probably read it and feel enlightened so they have to share. They have no concept because they have never been challenged by burdens that steal your free time. I frequently explain to friends THEY should read these books so they can apply them if they reach a point where they have challenges without time to read. I understand and have felt your frustration.

@cjme Oh, my goodness! You hit a nerve in me. It’s like a dentist that hits an aching tooth while probing your mouth. You said, “They have no concept because they have never been challenged by burdens that steal your free time.” Hello??? Wake up friends and family. If I hear one more person tell me that I need to remember that caregivers need care too, I’m going to scream. They say this from afar and then walk away. As my dear husband becomes less capable, I have to be more capable. Mornings start early, often before 6 AM. My plans to take time for myself to shower or watch some of my favorite programs in the evening had to be scrapped three times this week. The evenings didn’t end until after 8:30 PM when my husband was tucked in bed and I finally felt like I was off duty. One night it was 9:15 PM. Thank you for listening to my rant. All of you are saying the same thing. If you haven’t walked this road that we have been given to travel, you do not even have a clue. If you are a friend or family member, offer a meal. Come sit with my LO while I shower and wash my hair. Bring by a small bouquet of flowers or sit for 10 or 15 minutes. Open yourself to listening to what I and others are struggling with. Just let me know I am not alone.

So true everybody— they just do not know.— but i hope they never do— because that would mean that they have to care for a loved one with dementia— and thats a hard hard road. Hang in there— better days are coming.
Hugs to all

@caldiana13 You are not alone. I’m on the same path as you, so are other caregivers on this forum! 🤗

I was my mom’s caregiver when she had dementia. Best thing family could and eventually do was to take over her care and supervision so I could have a full week off. Looking back I should have taken one full week off each and every month to recharge and live MY life. What I learned is that care facilities will often agree to short term stays if they have beds available. Otherwise, getting family to step up also helped.

I like the title of this thread “what helps you the most.”
It is a positive question and something I need to concentrate on more… the positive.
When I catch myself ready to burst into tears, if I’m alone sometimes I just let it burst ( feel relief when I’m done). When I’m in the presence of my husband who I am the caregiver to, I give myself some space, catch my negative thinking, have a seat for a bit, tell myself positive things….then continue on.
One time I was with a small group of women, and I learned the hard way “don’t talk about your husband with this group. I was hearing a lot of judgmental “advice”… I got up and just quickly walked to the ladies room…let myself burst. When I was composed I got myself a cup of tea at the coffee station, returned to the group and NO WAY was I discussing the subject of my husband again.
This caregiver forum is a healthy place to be. Let’s give each of us a hug….we are not alone. We have each other.
Prayers, God’s blessings, and love to all of you.

@sillyblone I totally understand about the misery of unrestful nights. He sleeps all day, and then when I need so badly to sleep at night, he is wakeful, and I can’t change it.