What can we learn from caregiving in hindsight?

[DrBarryJJacobs]

The first anniversary of my mother's death from complications of vascular dementia and kidney failure just passed. It was an occasion for me to look back on the 7 years during which I was her caregiver. My AARP.org article on what I believe I learned is below. What have you learned about yourself, your capabilities, and your areas of weakness through the course of your caregiving journey?

https://www.aarp.org/caregiving/life-balance/info-2018/caregiver-retrospective-one-year.html

[LogicsHere]

I looked after my mother the last 7 years of her life.  The first 2-3 weren't bad as she was still fairly independent and I could get her out and do things including making dinner together (I was still working at the time).  Then she started passing out and required surgery for a pacemaker implant.  Still she was fairly independent for another 2 years but at that point I kept my apartment vacant and I moved in with her as I wasn't confident that she could be left alone any longer.

In 2015 her body started to fail and I had her in and out of the nursing home because I didn't want to place her but one day she went off the deep end, perhaps after having a ministroke and I had no choice but to place. But in her state (she had gone into an I hate  you mode and I listened to that all day and all night and until I couldn't stand it anymore) I knew I couldn't do it any longer.  It was at this point I lost my job due to lack of work and while I was upset about that, it was probably a blessing in disguise.

It took 5 months and 3 prescription changes to get her to her more normal self.  At one point the medication had made her suicidal.  It was scary.  I spent 5-6 hours almost every day of the last 2 years visiting with her in the nursing home playing games, laughing, enjoying pictures of her first grand child, enjoying the nursing home parties, etc.  But there came a point she started slowing down and losing interest and I could see she was deteriorating.  I watched her get weaker and weaker while at the same time trying to spend some quality time with her when she wasn't sleeping but it was hard.  We didn't always get along and with her dementia I would slip and begin arguing or trying to reason with her which of course wasn't helping but instead hurting.  Every time we had these disagreements I would get angry with myself. There were times she'd apologize for taking up all my time and I told her that she wasn't taking up my time, that since she couldn't be home with me that I could be there with her.  I watched her struggle to eat and if you asked if she wanted help her response was "I can do it".  It's the one picture I won't ever be able to get out of my mind. I watched her lose the sight in one of her eyes and prayed that she wouldn't lose the sight in her other eye.  I knew she wasn't going to live to be 100, but she did make it to 97. 

I lost her back in Sept 2017 and I miss her something awful.  I talk to her every day and keep asking myself if there was more that I could have done for her. I've read those stories that say that caregiving was a rewarding experience for them.  I can honestly say that for myself it was not.  What I am thankful for is that I had the chance to make up time that I had previously lost due to the distance between where we both lived.

[SarahRebecca]

Thank you for sharing your caregiver story. It helps to know that someone else has struggled with this role.

[robertkentlaub]

At age 61, I ended a successful self-employment career to provide needed daily living services to my mother who was still living alone in her home at age 92.  Days later, she broke her hip and went from surgery to a well recognized rehab facility which I hastily researched because the hospital insisted on discharge faster than I anticipated.  As an only child with all necessary POA and health care directives in place due to my mother's incredible "planning ahead", I was legally prepared to advocate, and with a strong and lengthy business backround, I was competent.  My mother went from an unsuccessful rehab right into skilled nursing at the same facility as a private-pay patient, not on Medicaid.  For seven months prior to her death, I spent approximately five hours a day at her side in the facility, seven days a week.  I kept a daily journal because her "care" and the environment was abhorent.  I advocated in the most friendly way, wanting to enlist the support of staff and demonstrating that I really cared about my Mom. Essentially worthless. And the bottom line is:  make every effort to find a way to keep your loved one out of an institution.  The real "caregivers" there are just CNA's, the lowest paid and least trained people that you can imagine.  They are the hands-on folks, and they are, for the most part, not caregivers.

[GailL1]

@robertkentlaub

I would be curious to know how the nursing home which you are speaking about compare on the Medicare Nursing Home Compare Listing.  Would you look it up and tell us what star rating Medicare is giving to them and if this compares to your results.

Data for consumers is not worth a hill of beans if it is not correct and especially for this type of service.

Medicare Nursing Home Compare Data

[EveRH]

I've been a family caregiver (or "assistant") multiple times, including a 7-year period as a teenager. These are the things I learned not only from my own experiences, but from those of friends:

- It feels very good to know that you did the right thing, and made life better for someone you loved.

- Sometimes it's easier to do things yourself, than deal with family members who contribute little and/or cause strife.

- It's helpful to find a supportive outlet, like a facilitated caregivers support group. It's a place to exchange good information, and where you can vent frustrations in a safe, non-judgmental atmosphere.

- It should feel like a welcome relief when the need to be a caregiver is over. It's great if the person was only temporarily in need, but death is a part of the cycle too.

- No one should give up their own life so much, that they can't back on track with their own life, after a reasonable period of time.