Wednesday 3 April 2019


The other day, my caregiver best-friend-forever Rose and I were chatting online about the essential truths of caregiving. Rose has been a caregiver for 47 (yes, 47) years. I have been caring for the past 30 years. This is our list of essential truths. BUT this is a LIVING list and that means we would love for you to add your truths here in the comments. Let our list be just the beginning of all that we know to be true in caregiving! 

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1) Nothing cures a crisis like a new, different crisis. 

2) If I happen to get a real rest and are lulled into relaxing, it's hard to come back into hyper-vigilant mode.

3) Weathering crises doesn't get easier over time, it gets harder.

4) The worst is when a NEW symptom crops up - something I've never seen before (and I always think of that Dorothy Parker line, "What new, fresh hell is this?"). 

5) When I'm on duty 24/7, I can keep going if necessary, but I do cry easily and I make lots of mistakes.

6) There is always one more thing.

7) Trust your gut. It's almost always right.

8) No one knows my loved one better than I do.

9) Sharing my journey with others who are in the same boat is the best coping tool.

10) Love is the great engine and energizer. 

Now, add your essential truths in the comments section! 


Unknown said...

Patience with others and gentleness with ourselves. Dig deep for these virtues even on the most desperate days.

The Caregivers' Living Room said...

Yes, Oh Yes! "Patience with others and gentleness with ourselves." These two are so difficult to achieve but even just knowing that they are so critical to living well as a caregiver over the long term, this is something - just to RECOGNIZE this reality. This is wisdom and achieving these virtues even sometimes is truly 'evolved' as a caregiver. Thank you!!!

The Caregivers' Living Room said...

And another very true truth this time from Twitter: "My care holds space, and I need the care of others to do the same for me."

The Caregivers' Living Room said...

And another from Twitter: despite all the struggle, frustration, anger, exhaustion, incapacity and isolation joy can still exists in moments!

The Caregivers' Living Room said...

Another couple from Twitter: Overworking oneself doesn’t necessarily improves the wellbeing of the person being cared for. Caregivers can and are encouraged to take a breather now and then.


Try to always chose a smile or find laughter. It helps to release stress in a positive way.

The Caregivers' Living Room said...

Another - this from Dr. Brian Goldman on Twitter: My late father ignored his own health problems while caring for my mother.

Nan said...

A friend on either side is helpful in navigating the middle way. One to agree that the universe is indeed shitting on you, the other to suggest that hard endings sometimes signal new beginnings. I usually call both on the same day.

Anonymous said...

((((((Donna)))))) ~

My dear BFF forever and ever, thank you for sharing our Truisms!

Actually, this year, I'm approaching 50 years (half a century! Yikes!)of providing care to my sons. Now, I'm also caring for my husband, as you know.

I love all of the comments/suggestions!

While grieving for my youngest son, I researched about the affects of grieving, particularly for bereaved parents. I learned that tears and laughter are healing tools, because each releases hormones to fight cortisol. It's is biologically healthy for us to laugh and cry. I try to do both everyday.

I cannot stress enough how important it is to have a support group of your peers. Only those, who have traveled on a similar path, can truly understand what you are going through and offer guidance, advice and wisdom.

I'm still functioning today, because of the love and support I've received from you and thousands of others on line. I've belonged to several G Tube, ostomy, epilepsy, child neurology, and parental grieving groups.

Thank you, Donna, for all you do to support caregivers and advocate, teach, and inform on behalf of people with disabilities. You are a true champion, and I'm honored to be your friend.

Love & Light,

Unknown said...

When life has been most challenging my mantra has always been "this too will change." Hoping for the better and hanging on to hope.

The Caregivers' Living Room said...


Unknown said...

There is another way of being with the darkest moments in our life.

Unknown said...

I would be ungrateful if I decided not to share our success experience with ZOMO, I was a born caregiver, so it’s hard for me to look at my own needs as separate from my Dad’s needs. Most patients just need someone to hug them and tell them that they are not worthless, the treatment I tried not only worked but I believe cured him.

He was diagnosed in 2011. I took Dad to the GP after noticing that he had become increasingly forgetful and vague. The clear sign that something was wrong came when he drove his car to the local shops (a five minute drive), bought his shopping, then walked back home, forgetting the car was parked outside the shop. The next day he rang me to say the car had been stolen. He had no recollection of leaving it behind. After a week he began to repeat himself and ask the same questions. He would struggle to remember conversations that had only occurred five minutes earlier.

His situation was very complicated. I understand how one feel as a daughter and once caregiver, memory loss is so much more complicated. Many have been conditioned to think that traditional medicine has not found a cure for a disease. ZOMO have challenged this train of my thought. When he was ill, it was a tragedy, I endured, I was broken, I knew hardship, I was lost. But here I stand and I can tell you unequivocally that my Dad is cured. It is those of us who have been broken that understand the meaning of memory loss. As I look at the past and start writing this, tears of joy overwhelm me. I realize that every time I thought I was being rejected from something good, I was actually being redirected to something better. It was one of my most difficult jobs and one that I poured my heart and soul into daily. Taking into account how well my Dad progressed in that space of time and now. There is no more memory loss symptoms for more than 6months now. The thing is, I get peace of mind when Dad is well taken care of: when he’s happy, I’m happy. Right now, it’s all about him…I always enter into his world so we can manage life together. We wake up every morning with a smile and we look forward to what the new day will bring. Reach out to him at [email protected]

Alice Gray said...

I cannot stress enough how important it is to have a support group of your peers. Only those, who have traveled on a similar path, can truly understand what you are going through and offer guidance, advice and wisdom.
Reference: Senior Center in Northfield, MN

Bohemian said...

As a long time Caregiver... 37+ Years and Counting... I Loved your Living List... and would add that a Wicked sense of Gallow's Humor is Helpful.

Unknown said...

I can’t forget in a hurry my Mom's horrible years of fight with Mental ailment (Alzheimer). My Mom got really sick around Christmas that year. When I saw her in the hospital with all those tubes, I just lost it. I got so hysterical that I had to be escorted out. Soon after that, I got into that altercation with my neighbor and was sent to jail. When I got out of jail, Her symptoms were acting up and I felt so angry.  Dad had already taken her to a state psychiatric hospital. I was really nervous, but I talked to a psychiatrist there who made me feel comfortable. For the first time, she opened up about what she was experiencing—the voices, not being able to remember things, the paranoia. She said, “Your mom is battling Alzheimer.” I didn’t even know what that meant.

He suggested that when she got out of the hospital and off the treatments she was taking there, we try a new treatment for Alzheimer. After weighing the risks and benefits, we both agreed the treatment, given through monthly injections, might help control her symptoms. Meanwhile, I made friends, and gained insight into her illness. During the week, there were movies, cooking classes and education sessions about her disease—basically, activities to help people like her get back into society. I learned about Alzheimer and what some of her triggers were. All told, she stayed there for two months and we left, I was taking her for doctor’s appointments and grocery shopping. It was hard, especially when her birthday passed, I still helped her walk, fix her food and dress her which made me sad because she was very active at 69 until the illness struck her.

I came across a herbal medication sometimes last year called zomo but before we started the treatment, we started a day rehabilitation program, and also started the new medication with zomo. I was working hard to achieve my care goals by following the treatment plan. Her symptoms got under control within three months, as she started feeling better. First she regained interest in the things she used to enjoy, like calling/visiting our family and friends for lunch and going for walks in the park and grocery shopping. I will never forget what I went through, or what it took for her to get here. I don’t take any of it for granted. I consider myself an advocate for people who don’t have any knowledge about this herbal medicine. To anyone who’s taken the time to read this that may be struggling with this awful ailment (Alzheimer), reach out, share, I guarantee you reach out to [email protected], and know, that as lonely as you may feel, as hopeless as you believe things are, please know, that there are so many patients out there going through same and you are never alone! reach out to him so you could share your own testimony to let others know there is hope.