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Old 10-30-2014, 11:25 AM
2,429 posts, read 3,057,910 times
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I know this is long, but I'm starting this thread in the hopes that it will help someone.
I had posted after my mom died two weeks ago.

Many of us here deal with -- perhaps even struggle with -- the responsibility of making decisions -- major, important, life changing, and life and death decisions for our loved ones. Maybe we even resented having to do that, BUT we did what we could, hoping it was our best.

That's where my family is right now.
Two months before my mom died my sister and I had taken mom's care out of my brother's hands and off his shoulders, and hired full-time live in aides. We then changed those aides just two weeks before she died.

We had stocked the house with all she could ever need. Even had a dedicated safe room -- like a giant pantry -- but for cleaning supplies, toiletries, paper goods, Depends, anything mom would need but perhaps shouldn't get into -- even sewing kits the aides could use if needed. We bought a baby monitor for her room. The aides were at her beck and call.

Sure she had mid stage dementia and was almost 89, but she wasn't "sick" or expected to die. A plan was all so in place. Then she passes away.

My brother who had watched after her...was against the aides. He said, "we won't know FOR SURE if she's getting her meds correctly. We won't know how they're talking to her, how they're treating her." He said let's UNdo this several times He lived directly across the street and was our eyes-and ears as best could be.

My sister, who had my mom for a month and a half this summer, now wonders if bringing her back home was the right call. Would she have lived longer living with my sister, which she so enjoyed? I do know she did want to stay. And we did say, "let's give the aides a try until Thanksgiving, and then maybe you can go back."

Were the aides giving mom her meds? We think so? What would they gain by NOT taking care of her? She was the reason they had jobs. Would mom have preferred to stay with my sister? Perhaps. I know she didn't like feeling like she couldn't go anywhere are do anything for herself. We said, "you deserve to have someone wait on you hand and foot. You've earned it." But she said she felt like a prisoner....being followed so she wouldn't fall, no being allowed outside by herself, needing help with personal care, etc.

So did we make the "right" decisions? Would she have died staying with my sister? We don't know.

Many of us caregivers or responsible parties are middle-aged children -- but some are young, in their mid 20s. But no matter our age, we all need to to find a way to cope, to manage, to navigate our various situations so we can accept and have peace about our part in what may happen, how things turn out...and dare I say, how they ultimately end.

I've said all this to encourage us all to do what we can...(whatever, and however little or much that is)...so that even if you have doubts -- even if there are small regrets -- 'afterward' you can still say you did what you thought was best at the time.

That is comforting....to me, at least as I'm still processing what's happened.
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Old 10-30-2014, 04:35 PM
Location: 2016 Clown Car...fka: Wisconsin
738 posts, read 771,404 times
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I am so sorry for your loss. I think losing a mom is one of the most difficult transitions that one can experience.

I think that all caregivers go through a bit of what you're describing here. I myself struggled with every single decision and things happened so fast, I was making many decisions in the snap of a finger. It was only after the dust settled that I began to question everything I had done...sitting with silent tears trying to convince myself that I did the best I could in the wake of the inevitable outcome.

No doubt this is hard for everyone who cares for a loved one. I can say from experience that only time will help to silence those nagging questions.

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Old 10-30-2014, 04:41 PM
Location: Tennessee
16,227 posts, read 21,996,637 times
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I understand the "what ifs" after losing a loved one. There always seems to be questions that arise, wondering, and worrying about did we do the right thing?
Was she/he happy in their last stages of life, but I think that everyone has "a day" to pass away. I think that its not up to us, but up to God when its our time, it our time.
It sounds like you did the best that you could. Don't torture yourself by looking back.
She will be missed!
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Old 10-30-2014, 06:28 PM
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Obviously many of us no matter what age may deal with 'niggling' doubts afterward.

But it just so happens that when I started the thread I was specifically thinking of the young people who've posted here, who are in their 20s and dealing with this. I can't even imagine that. I'm 54. Sort of knew how to navigate. Who to call. Where to start looking for help. How to research agencies/facilities. How to coordinate a team approach getting doc and attorneys on the same page, how to get a CPA, attorney, financial planner on board.....and I had a cooperative /compliant mom. And I'm still 'wondering.' I don't want to think about the shock of the 'aftermath' for someone with less "life experience."

How on earth a 25-year-old with a belligerent non cooperative parent handles all this...AND how they'll 'process' any doubts afterward, I can't even fathom. So I was hoping to let them know that doing the best you can for them while loved ones are alive, can and does provide comfort when the niggling thoughts and second guessing arise.
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Old 10-31-2014, 01:03 PM
Location: Somewhere
1,275 posts, read 1,720,208 times
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Thank you rdflk for sharing this!

First and foremost I want to say I'm sorry for the loss of your Mother. I remember all of your previous posts and remember your genuine care and love for her.

As someone close to your age and also going through this with my own parents and my husband's, I too could not imagine someone in their 20's or even 30's having to deal with all of this. There's not a time that I don't question what I (and the rest of the family) are doing or not doing and I KNOW when one of them passes the questions will continue!

I think what is important for all of us to remember is that there is not one clear right way to handle this and like you said to just do the best you can. None of us are perfect!

And although I am struggling with my faith in God at this time, I really do believe that when it's time, it is God's time, even if us humans didn't understand the timing. And whether one believes in God or some other higher power, I hope we can all feel "some" comfort in knowing that.

Hugs to you and your family during this time of mourning and loss!
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Old 11-03-2014, 06:41 AM
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As somone who started dealing with their parents care in my 30's, and is continuing with my dad's care into my 40's - I'm sure its an individual event, whether or not its overwhelming.

personally, I couldn't imagine being much older (like the folks in their later 50's/mid 60's taking care of 80+ year olds) ... I would still have been working and even MORE exhausted than I currently am.

Plus, since I was the youngest child of older parents, I've dealt with the fact that my parents were "old" my entire life. So it wasn't (in my case) something that happened totally out of the blue, even if the precipitating event was in fact an accident/emergency.

But again - my individual case.

As far as processing your mother's passing and your family's care of her. You did the best you could. Going down the "what-if" route makes you a bit crazy.

I've had the same questions after my mother's death, she was in a rehab center (briefly) and asked if she could come home. She was finishing a course of strong antibiotics, and I told her she needed to stay until her symptoms were gone. Instead she relapsed - much worse, ended up hospitalized again and never got to come back home. (I blame myself for leaving her in the SNF and the SNF for ignoring her worsening symptoms)

I did the best I could. As you did. I of course wish I'd allowed her to come home -- maybe she still would have relapsed, but she would have been with us and my father.

I still feel bad about it sometimes. Not debilitatingly bad, just, *sigh* I wish I'd done better. But I know I absolutely did the best I knew how to do, and I know my mom knew we all loved her so, and she was looking forward to coming home from the hospital. So, that's what you focus on, not what went wrong.

Additionally, I vow to use my knowledge from that experience to do better by my father when that time comes.

Best to you and your family. Your brother no doubt feels guilty that after caring for her for so long, this happened when he was getting a break. He'll have to come to his own terms, as will your sister and you. Hopefully you'll all realize each did the best they could and that your mom was loved and loved you all in return.

best to you and peace to your family
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Old 11-04-2014, 07:33 PM
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Very sorry for the loss of your mom, but both you and your sister owe a lot to your brother. He for years did the majority of the work, it's nice that there was help for the last couple of months but your brother was the caregiver for the long haul.

I really hope the two of you have communicated that to him.

As far thinking the paid caregivers would be diligent in order to remain employed is nave at best. They know there is going to be another assignment when this one ends. That's not to say there aren't wonderful people who are paid caregivers, but they're hard to find and you can't assume that someone is going to due the job correctly or care. It's not much different than assuming a babysitter is going to watch out for your kids.
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Old 11-09-2014, 11:00 AM
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So as not to derail another thread, I posting this here.

I just want to put in a word of encouragement for all of you who have uncooperative elders.

Thank Gd my mom never fought us on anything we did for her....
I found our eldercare lawyer, CPA, and financial planner...and she never fought me on it.
Over the years as needed, I added specialists to her medical team, and she always complied. By the time I was done she had a GP, geriatrician, and dementia specialists at one of the top research facilities in the country. When she needed to see a cardiologist or vascular specialist she went, and they were all in that same top medical system.

To try to do all that -- AND have the elder fight you on it, I can't even imagine. I have a friend who's elder is NOT cooperative. And I see that it could be so much easier for them both.
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