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Back in the so called real world
Posted: Monday, September 7, 2020 6:21 PM
Joined: 7/28/2016
Posts: 9

Earlier this year, I lost my father to COVID-19. My mother had already passed away a while back from dementia-related causes.

It's hard to remember a time when I was not a dementia caregiver. It really took over my life. I spent several years regularly going to visit my father in the memory care unit. Frightening at first, it came to seem normal after a while. I got used to being around a lot of dementia patients, communicating differently with my father than before, and "therapeutic lying" if necessary. Although it seemed like I was spending a good deal of my life in the Twilight Zone, I felt a profound sense of purpose in looking after him, and my mother when she was alive. 

In fact, it is rather disorienting to not be in the alternate universe of the memory care unit anymore. It has been such an overwhelming experience, and suddenly it was over when he died suddenly from COVID. 

How do you go on with your life after the responsibility of being a dementia caregiver is over?

Posted: Tuesday, September 8, 2020 2:56 PM
Joined: 4/1/2014
Posts: 5213

What you are feeling is very common and I had it too. I had to work at getting my own life back because as you said, caring for someone with dementia can take over your world. It has gotten easier as time goes by, but initially I had to push myself to do things spontaneously (which I know is hard to do right now with COVID-19) and to give myself permission to be happy. But I always knew the day would come when my mom would be gone and I would have to live my life to the fullest  because 1. I knew my parents wanted that for me and 2. life is too short to not have adventures and fun. 

 I feel I gave all I could to my mom when she was alive. I took care of her in my home-for almost 15 years. We won't have more time than what is allotted to us, so best we find the courage to get out there and live again.

 If you continue to have issues, it might be helpful to go through grief counseling with a therapist or an online grief program. Best to you!

Posted: Sunday, September 13, 2020 4:36 PM
Joined: 11/22/2019
Posts: 399

It was very strange after my mother died after a short hospital stay in March 2020.

The activity that had dominated my hours every day was just... gone.

Days that used to be filled with hours of championing medical care for her, ordering supplies for her caretaking, getting her to and from medical appointments, spending time with her were suddenly empty.

My life was mine again but with a terrible hole where my mother and her needs used to be.  As if a huge wedge had been painfully forced in, and then removed, leaving a gaping crack.

I took my dogs for more walks.  I began to attempt to catch up with everything that had gone to hell while I was busy caring for her.

I grieved.  I grieved how hard a struggle her life had been in so many ways.  I grieved for myself.

Discovered that while I was busy caring for my mother, arthritis crept up in my hands and made it very difficult to return to my sock knitting now that I had time for it.

My hair was much more grey.

But I was alive, and I understood that I needed to embrace it.  So I began again.

Posted: Thursday, October 8, 2020 11:13 AM
Joined: 10/8/2020
Posts: 1

hi everyone i lost my mom three weeks ago.  i'am happy she's in heaven,and she is in her 20's after she went to heaven.  so, i take it day after day now.
Posted: Friday, October 9, 2020 11:28 PM
Joined: 4/1/2014
Posts: 5213

 tanyahite, I'm sorry for the lost of your mother three weeks ago. I also felt a sense of relief when my mother's suffering ended and find comfort in knowing she is now with her family and husband and with our dear Heavenly Father.  Best to you as you move on to the next chapter of your life.

Posted: Friday, November 13, 2020 8:58 PM
Joined: 2/24/2020
Posts: 157

I am sorry for your loss.

I totally understand and have no answer. 

Everybody says it gets easier, but I grieve for the loss of my dear wife. She had Alzheimer’s for over 7 years and I worked from home and cared for her and now there is so much “emptiness”. She passed away 3 weeks ago and now I have a house that is empty and I go from normal to a mess. I just am so hollowed out. I cared for her for so long. I got some caregivers the last 5 months. Then after that within a month she got worse and I got hospice and 5 days later she was gone. I hated and still hate this disease. I feel so conflicted in that I am so glad she no longer suffers from Alzheimer’s to wanting her back with me - to be with me again. 

I get up but it is difficult to motivate myself. I clean a lot. I work still from home, but the work is dry and uninteresting. 

My wife was my life. Not sure how to go about being normal.