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It takes us by surprise because we don’t want to consciously admit to ourselves that we are grieving for the person that we are caring for.
The truth is that we have already lost the active and healthy mothers that we once had.
When they do die, we are sad but happy that their suffering is finally over.
I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
The 36 Hour Day is another excellent reference type book to have on hand for when you have questions crop up.
Teepa Snow has great how-to videos on YouTube that are used to train caregivers who work in Memory Care Assisted Living environments. She has great tips for you as mom's caregiver.
Alz.org is the Alzheimer's website which provides an 800 number you can call to speak to a person about your questions and concerns. They also have a good chat forum there.
Keep a list of caregivers on hand or an agency to use so you can get respite...you'll need to for your own sanity. Remember that Memory Care Assisted Living places provide respite care for a week or 2 for mom when you need it. Look into mom's Medicare spplemental policy to see if any respite care is paid for and if it's at a Skilled Nursing Facility or where.
Remember that your life matters too, not just mom's. If you feel angry and burned out, ask for help before you lose your cool. We're all human and DO lose our patience sometimes, especially when asked the same question 100x in 10 minutes. Dementia is a very frustrating condition for everyone to deal with, that's for sure. I know.....my mother suffered from it for 6 years before she passed in February. She lived in a Memory Care Assisted Living apartment so I've been down this road for awhile now.
Wishing you good luck and Godspeed.
I could say that I could have both posted what she wrote (well, not the best friend part) and at the same time, I’m STILL angry.
Now, though, with the help of the good people on this site, I understand that it’s just plain GRIEF. Grief all we have both lost, and for the ongoing, one-sided caregiving that seems like it will have no end.
I imagine that that part of grief will linger for me until she passes, and then however long THAT needs in order for it to dissipate.