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In hindsight, what would you have done differently?
Posted: Saturday, October 1, 2016 5:13 PM
Joined: 7/29/2016
Posts: 319

What have we all learned from this journey? 

I ask because most of us who have gone through this can surely help others who are just starting, or who are half way through. 

For my part I would not have argued at all. I did stop arguing, but I wish I'd stopped it a long time earlier.

And I wish I'd recognized the signs earlier. I thought it was just Mum being her ornery self, it never crossed my mind this was dementia. Not even when she did some really weird things. 

I also wish I had stepped in sooner. 

Posted: Sunday, October 2, 2016 1:24 PM
Joined: 12/16/2013
Posts: 352

There are things that I would have done differently. First and foremost more patience. I tried and did my best as I'm sure that we all have. To me, being a caregiver is like on the job training. We learn as we go. We adapt. I would have hugged and held hands more often and longer. I wish I would have taken videos pre and post Alzheimer's. I miss my Kathy and don't have one regret being given the privilege to be her caregiver.
Veterans kid
Posted: Sunday, October 2, 2016 8:07 PM
Joined: 10/17/2014
Posts: 1239

I would have not wasted time and energy trying to get my parents other  kids and grandkids to help. 

I wouldn't have bought a cheap phone when my nephew shut mine off 2 weeks before my dad passed just so "they" could call.  In that 2 week time they called  ONCE.


Posted: Friday, October 7, 2016 8:08 AM
Joined: 5/31/2014
Posts: 124

I don't like to dwell too much on what I should have done.  I do wish I had researched the disease earlier rather than pretend that mum wouldn't get that bad with the progression of the disease. She was diagnosed 2008/09, started medication, but I closed my ears and eyes to wanting to know what might happen as the disease progresses.  I also wish I had more patience at times.  The only saving thought on this is that if I lost patience or yelled a little at my frustration, she wouldn't remember it 10 minutes later.

I AM glad that I started to bring in home health aides before I really needed them, that I had the DPOA arranged in the nick of time while she could (barely) sign her name, that ten years ago when dad died, we sold my condo, her house and bought this 2 family house so that we could both be together but in separate floors, enabling me to sleep and be downstairs with her for the final 2 years.  I'm thankful that we had a great and close mother/daughter relationship, that I kept many letters, notes from her, that she loved to write and I'm still finding her journals and diaries to remind me of all the good times, and apart from all the home movies I have from younger years, I have  a 1 minute video on my phone that I took a year ago.  I'm thankful that I took the advice of her geriatric doctor and put her on hospice and that I made all the final funeral arrangements 3 months before she passed so that when the time came, I was free of worrying about it all.


Posted: Friday, October 7, 2016 2:27 PM
Joined: 7/29/2016
Posts: 319

abc: You are so right, far better to focus on what we did right. 

I was right to bring my mother here and get her into a place a few minutes from me. I was right to see her every single day, to take care of her, and to be available to her almost 24/7. To learn how to humor her and become kinder and kinder to her, and redirect when she started with her anger or anxiety. And to color her hair when she wanted it, and to sit and watch the ghastly television shows she wanted in the end. I was right to stop trying to get her to go down to the dining room, and instead make her the food she wanted. 

And I was right to call hospice when the time came. And to then get get in help 24/7 when I could no longer handle it all. And to get her a hospital bed when she was ready. And to collect the entire family here when she was clearly close to dying. And I was right to stay with her to the end, as she labored with her last breaths, and sing to her and stroke her, wipe her forehead with a cool cloth, and hold her hand all the time. And when she took her last breath I was right to finally let go and wail ... 

I did almost everything right. Not all, but almost all. 

Posted: Friday, October 7, 2016 5:10 PM
Joined: 12/4/2011
Posts: 19636

It is one year today for me and I can still catch myself wondering. I know more than I did a year ago but I have to tell myself that that does not count. I feel regret but not guilt.

It is a good thing for us to remember to concentrate on the "rights".

Posted: Friday, October 7, 2016 8:21 PM
Joined: 7/29/2016
Posts: 319

Oh how I miss her ...
Posted: Friday, October 7, 2016 8:26 PM
Joined: 12/4/2011
Posts: 19636