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Caregivers Brain

Caregivers Brain

Posted by Brighty on Jan 6, 2019 9:48 pm

Hi guys.    I'm going to put this out there.    I've been reading posts about Chemo Brain and wonder if there's such a thing as "Caregiver Brain."   I'm finding that I too, as a caregiver am no longer the same person I was before the ordeal.   My memory is not what it was.   I'm spacey much of the time and have to write things down or I forget.        My anxiety is still quite high, like in the days of waiting for scan results.   Although the ordeal has been over for months, I feel like I'm still waiting for the other shoe to drop.      I've never truly been able to calm myself down and go back to my complete normal self, the way I was before.     I'm more serious now, and not as social with others.    What are you other caregivers or former caregivers  feeling?   Cynthia Mac‍   jorola‍  Aly‍  rainbowpromise‍  itsawonderfullife‍  and any other caregivers please share your thoughts.      

Re: Caregivers Brain

Posted by Minus2 on Jan 6, 2019 10:25 pm

Hi Brighty‍, 
I was a caregiver to my mom for the last few years of her life as she became less and less independent with a diagnosis of COPD, so not cancer, but just as devastating to watch her slip away little by little.  I was also a secondary caregiver when my dad was diagnosed with lung cancer in 2004; mom was his primary caregiver.  2004 - that's when I stopped sleeping.  I didn't sleep a full night until about a year after my mom passed away in 2009.  So a full 6 years of not sleeping, waiting for the other shoe to drop.  I think it's pretty normal to go through this - as caregivers we are on high alert so much of the time and we have a really hard time settling when the perceived threat is not there anymore.  You describe a high level of anxiety and you have been through trauma.  Dan's illness was hard on both of you and I recall you expressing such concern and frustration over his choices.  For sure anxiety makes it difficult to attend, to retain, and to retrieve information.  In combination with the trauma you experienced, it's no wonder you feel different and are less social.  In my experience, what you describe is very normal.  I think I did exactly the same thing when mom died.

Re: Caregivers Brain

Posted by Brighty on Jan 6, 2019 10:36 pm

Minus2‍  thank you so much for answering and  yoyr validation  that this is a real thing .   I'm sure many others experience  it too.   I still haven't  had a full nights sleep either yet in months.   Still anticipating calls from this and that  hospital for yet another emergency.     So kind of on alert still.    Anyways  thanks again and have a great day back to school tomorrow.    

Re: Caregivers Brain

Posted by princessmaura on Jan 7, 2019 6:25 am

I didn't have caregiver's brain...what I got was much worse:   I got diagnosed with cancer shortly after my mother was moved into a nursing home...I had to help clear out her hoarder apartment, did not sleep or eat properly, caught a cold, and then I noticed the cancerous tumour growing rapidly but I didn't know that it was cancer...
this was the beginning of a new identity:   cancer patient
my life would never be the same:    my old self had died and a new self would be born
my cancer journey:    I am on this journey of discovery...and I have been recently reading this book recommended by  Lianne_adminCCS‍ :   Picking Up The Pieces    Moving Forward After Surviving Cancer...it is an excellent book for people who have been cancer patients and I have been able to identify with so many thoughts and feelings with the other cancer patients in the book...so, I am not alone...I belong to the cancer community and we have so many thoughts and feelings in common...
I think that the lesson learnt from this is to be on the alert to take care of yourself when a caregiver because you never know when you can be the next person who needs a caregiver herself or himself...don't neglect your own health...

Re: Caregivers Brain

Posted by Brighty on Jan 7, 2019 7:05 am

princessmaura‍  yes you never know! We must all take proper care of ourselves.   Whether we are cancer patients  or caregivers.   

Re: Caregivers Brain

Posted by Cynthia Mac on Jan 7, 2019 11:16 am

Brighty‍ , this is a good subject to raise. As princessmaura‍  points out, caregivers often get so wrapped up in the caregiving to their loved one they forget to take care of themselves.

As Minus2‍ discovered, it was reallly hard to try and adjust or scale-back toward a normal routine once our caregiving role was “over” - in my case, it isn’t over as I am still Dad’s health co-ordinator, and as we all know, there’s those follow-up checks and tests. I had a lot of anxiety this summer and fall between that and another family issue. It was as if I couldn’t find my way back to my “new normal.”

I have always been a list person, and I have found it necessary to be very diligent about keeping those lists. It seems so easy to get distracted and have something fall through the cracks, whether it relates to Dad, or another of the various hats I wear. Another tool that has been imperative to my organization needs is my Google calendar - it’s the first time I’ve had my phone talk to my iPad talk to my PC, and it allows me to colour-code Dad’s events so I can see his stuff and my stuff and know what times are free to book for whom.

To deal with the anxiety, I have gone back to mindfulness practices. I joined Audible last month and downloaded two books by my favourite author, Jon Kabat-Zinn, and I’ve been using them at bedtime to try and clear my mind and practice being in the moment. I’ve also been trying to get out for at least 20 minutes every other day or so to get fresh air and exercise. Just that little bit can take the edge off insomnia - not that I’ve had much of it. Once I’m asleep, I’m asleep, it’s the racing mind that keeps me from getting there that needs the fresh air and exercise to shut down.

To me, it isn’t so much about a “brain” condition so much as a host of things that challenge us to keep an even keel under us as we navigate troubling waters. But I suppose it equates to similar symptoms.

Re: Caregivers Brain

Posted by itsawonderfullife on Jan 7, 2019 4:20 pm

Yes, stress and grief did a number on my brain. It's normal to have difficulty focusing and remembering. I had trouble remembering words for a while. My sleep has been all over the map during the caregiving and continues to be all over the map. I don't get hungry any more so I have to remind myself and motivate myself to eat. I don't have the same energy reserve either that I used to be able to draw on. I went back to work shortly after, full time plus OT, and have found this year that I need most of the evenings, weekends and vacation is spent resting, sleeping, accomplishing nothing. However, I know I have a better perspective and priority on maintaining my own well being as a priority so maybe I learned something through this ordeal.

Re: Caregivers Brain

Posted by Brighty on Jan 7, 2019 6:20 pm

itsawonderfullife‍  thank you for your responose.      I'm exactly  the same.. I can't focus on things.. my mind wanders constantly..  sleep all over the map  and my spare time is spent resting and doing nothing.. and feeling guilty  for getting nothing accomplished.    I'm not even  sure I've learned anything!     

Re: Caregivers Brain

Posted by rainbowpromise on Jan 7, 2019 7:17 pm

The only thing I found is that I had to write everything in a day timer. Most of the problem though was that I was undergoing testing and appointments for my health issues at the same time. To the credit of the medical health system in this area, there was only one overlap where I had tests on the same day my husband did, at two different facilities.

Re: Caregivers Brain

Posted by Brighty on Jan 7, 2019 7:48 pm

rainbowpromise‍  thanks   to you and everyone  who answered.     I'm seeing kind of a theme of memory loss and caregiving.   I'm also finding  I'm purting all my anxieties and worries into vinnie.      Every  time he sneezes I take him to the vet.    He's at the vet as we speak because  he sneezed.     I wish I was joking.    

Re: Caregivers Brain

Posted by Brighty on Jan 7, 2019 8:29 pm

I really have to tone down the anxiety.   Literally, I just paid the vet $67 dollars to tell me Vinnie sneezed!           There's nothing wrong with him, he sneezed for pete's sake!!!! I guess I'm so used to Dan, every cough, every sneeze and we were in the hospital and now history is repeating itself with the cat.       This is terrible.      

Re: Caregivers Brain

Posted by Brighty on Jan 7, 2019 9:12 pm

Cynthia Mac‍  thanks for your response.     You are very organized!!!!  I like the strategies you use to calm yourself down when you get anxious.   I'm going to have to practice mine more.   I'm putting all my anxieties and caregiving stress into my cat now.     My worst fear in the world is losing my cat.   So literally every time he sneezes, I take him to the vet.   It's the same type of anxiety I experienced when Dan was going through the illness.   Every time Dan sneezed, coughed, breathed I would get terrified he was getting sicker and sicker.     Now I'm doing it with the cat.     Every sneeze, every cough, I'm terrified something is wrong and I zip to the vet.       I shake in fear in the waiting room of the vet's office the way I did at all Dan's appointments, waiting for the bad news to come.    It's the same scenario, repeating itself.       I literally just spend $67 dollars just this evening for the vet to tell me he sneezed.  I felt so ridiculous at myself I laughed and cried at the same time.     Then I realized I'm repeating  the past year over and over with the doctor visits and the fears but it's just transferred to Vinnie instead of Dan.     

Re: Caregivers Brain

Posted by Cynthia Mac on Jan 7, 2019 10:20 pm

rainbowpromise‍ , it’s good to hear from you. I was thinking about you the past few days.

Brighty‍ , I don’t want to sound as though I’ve got the following all figured out because I don’t — I’m totally a work in progress where this is concerned! I think that a lot of our “memory loss” as caregivers is our worry distracting us from the moment when we wrote that appointment down, or thawed out that steak for dinner three nights ago and now have to toss because we “forgot” to cook it. We become so consumed with our “patient” that we lose track of the present. This is why I have turned to audio books about mindfulness. 

Your comment “feeling guilty for not getting anything accomplished” resonates, too. My grandma used to keep us busy every minute of my weekends with her, and she often said, “Idle hands are the devil’s playground.” So, yes, that message of doing SOMEthing all the time was hammered home again and again. There are times, though, when we need to be “quiet with our self,” not to continue worrying, but to still our worried minds, whether that is through listening to our breathing or just taking a quick second to remind ourselves that we are safe, even in this crisis, we are safe.

Re: Caregivers Brain

Posted by Brighty on Jan 8, 2019 8:20 am

Cynthia Mac‍  I k ow what you mean.    My parents generation doesn't believe  in down time or idle time.     They feel down time is only for the lazy.    My dad feels my generation  the gen xers are all lazy.    In 'his day' they got a job 5 minutes  after tbey graduated school and stayed at that job for life.     That doesn't happen any more.    My dad makes fun of us gen xers for 'down time ' and 'finding  ourselves '  he says 'everyone with two  arms and 2 legs should be productive at all times . "   so basically  me and all my friends are lazy accroding to his standards.    

Re: Caregivers Brain

Posted by Lacey_adminCCS on Jan 8, 2019 10:21 am

Brighty‍ - Great topic. I can relate when my Dad was sick I felt scatter brained and like I was always distracted. It was the same in the early grief days. Over time things subsided and I felt more like me.

rainbowpromise‍ - Good to hear from you. Glad to hear you will be focusing  a bit more on your well being. I was a bit worried to hear that you haven't had much time for your hobbies. The passion you have for your hobbies always shined through in your posts. Take Care Friend.

Re: Caregivers Brain

Posted by Brighty on Jan 8, 2019 6:19 pm

Lacey_adminCCS‍  kind of good to know its a real thing .!  I'm glad you are back to yourself.     

Re: Caregivers Brain

Posted by rainbowpromise on Jan 8, 2019 8:15 pm

Cynthia Mac‍ and Lacey_adminCCS‍ 
I check in when I get a chance.
My hobbies have not gone away, in fact I have added a couple.