I’m just frustrated.

CJJE

Today, I received a text from a childhood friend. She expressed to me she fears that Mom, my LO with AD living in a SNF since May 2021, “…is alone more than she should be.” Also, recently, one of Mom’s younger brothers said he would not be returning to the SNF because “…it smells like a nursing home,” and that I should be ashamed for putting her there. 

It’s like, where were y’all when Mom and I needed you?!? 

To practice emotional intelligence and empathy is exhausting. As her only son and attorney-in-fact, I’m either criticized or praised, and both are weird. It’s either “You need to [insert uninformed, unsolicited advice],” or “You are such a good son. You’ve done all you could. Now, do what you want to do. You are young. Don’t worry about her.” I don’t/didn’t take care of her because I want to be a “good son,” and I didn’t abandon her by placing her in a SNF when I (the only person caring for her) could not logistically take care of her anymore. 

I think the most frustrating thing is that I can’t just…be. My LO has already died a first death, and to see her is harder than anyone in her family or friend circle will ever know. The grief and pain and loneliness I feel every day are overwhelming, but I choose to suffer in silence. I miss my mom, even when I’m right in front of her face every week. 

I have to consider others’ feelings and thoughts and grief processes because Mom is also an aunt, cousin, friend, sister, etc. I want to visit my mom without feeling as if I have to “report” how she’s doing or how the SNF is treating her or whatever else. I want to visit her without having to video-call someone else in. I want to make decisions without the fear of backlash from those who care AND those who don’t. I want to be able to make decisions without being placed on a pedestal. There’s so much pressure, and no matter what I say or do, someone else will always feel compelled to say something about it. SO much pressure. She’s MY mom.

I simply love my mom, and I do what I do because I love her. I’m not perfect. I’m just trying to do what’s best for her as well as make sure hers and my well-being are in tact. I feel so alone, and I’m not ready for her to go. I’m not ready for her second death. 

Phoenix1966

Dear CJJE,

I want to be so angry on your behalf. I want to text that childhood friend that they are more than welcome to rearrange their life and visit your mom every day. In fact, I want them to start tomorrow and not to miss a single day no matter the reason. If they do miss one, then they should know it’s a personal failing on an epic scale. 

I want to call your uncle and say that you’re so happy he wants to take on the 24/7 caregiving of his sibling. It’s amazing he has the time, energy, stamina and finances to do so. 

I wish I could, but know I can’t. 

You have to take solace in the fact that your mother placed the utmost trust in you to make these decisions for her. That she unequivocally had faith that you would do the right thing by her. And you have by making sure she gets the round-the-clock care and supervision her disease demands. 

And you realize that no one will understand who hasn’t walked a mile in your shoes. They won’t. It’s a hard burden to bear, but it’s the truth. It’s kind of you to consider others’ feelings, but if they aren’t doing the same for you, I feel you can worry less about them as time goes on. Far easier said than done.   

Start taking back your life as her son. Don’t call them. Let them call the facility and have their own conversations. They’re adults; they can take initiative themselves. 

Again, far easier said than done. I lost my grandmother in December and it still rankles me when “friends” and distant family chime in with opinions. But now I don’t shy away from asking, “Where were you, who live 10 minutes away(while I lived 45 miles away), when she was afraid men were in the house to kill her at 3 am? Where were you when she undressed and defected throughout the living room at 1 am and needed to be cleaned up(as well as the house)?”

I’m sure others will comment more kindly and diplomatically than I have. So many here have years and years under their belt with this inhumane disease. You’ve done right by your mother and maybe no one else outside of these forums will ever acknowledge that fact. But it is a fact. 

And I’m sorry for your losses and those still to come. 

May flowers

 We have dealt with this with certain family members and acquaintances and it can be so frustrating. I have found it helpful to vent here from time to time as they do not get it, as Phoenix has said, they have not walked in your shoes. One family member of mine in particular is very judgmental- even though she is included in every decision, she still complains after the fact, and vents to my FIL’s former church. They are all so concerned and praying - but not one of them has called, visited, written, asked about him or anything in five years. Go figure.

The worst are people our LOs age - and sometimes I wonder if it isn’t coming from their own fears of being out in a facility. Some of them don’t realize how most of these places have changed from the old days. As for the smell, that is just unavoidable IMO. My FIL’s room always smelled of pee - but it wasn’t his bed, it was the sofa and chairs. Not much you can do there.

I try as best I can to not let them get under my skin, but it’s hard. If you’ve done your best, and it sounds like you are, that is all you can do. They won’t get it until they go through it themselves. Your only  responsibility is your mom. If they are that concerned, then let them do what they can to pitch in. Otherwise, for me at least, if it’s not someone willing to come along side us, I keep my updates to “he has good days and bad days”. I no longer go into much detail with some people because it never leads to anything productive.

Feel free to vent anytime and know that we get it!

dayn2nite2

Block the people who are complaining but not involved in her care.  Problem solved.

When people would ask how my mother was but hadn't visited her in years, I'd say "well, she has a terminal illness, so..."

When her sister told me that she felt depressed reading my monthly updates on my mother, my response was "Oh, depressed like changing your mom's diapers depressed?  Or another kind of depression?  And don't worry, you'll next hear from me when she dies."  And that was it.  She never had to take care of her mother, her mother passed away when she was a young adult.

This is the time you can pick and choose who you want to hear from and ignore those you don't.  You don't owe anyone an update, a response.

Out of all my mother's "friends," the only person who actually went to visit her after she was placed was a co-worker who had a sister with Alzheimer's, so she knew what to expect.  The rest stayed away.  And I only responded to her when she would call because she made the effort and that counts.

Wilted Daughter

As an only child with a 90 year old mother who is the family tribe leader and multiple know it all do nothing but talk siblings in far away places, I can relate. I'll say to you what I learned the hard way, sometimes people give 'advice' or 'suggestions' when they are not in a position to give anything else. If they are not helping with caregiving, cooking, cleaning, medical oversight, housing decisions, etc. then, in my opinion, they are not vested partners in the matter. 

Caregiving can be a thankless job/responsibility. There should be a balance between taking care of yourself and taking care of your mom. Your mom has you to care for her, but if something were to happen to you who do you have? Be responsible and balance it out the best you can...all you can  be expected to do is your best. Detached from the drama and do what's best for you and your mom...don't engage with them unless they are willing to do more than give instructions...you don't work for them.

DrinaJGB

We all know what they say about the road to hell being paved with good intentions.

  Nobody knows that more than a lone caregiver.

Cut off the negative ones who bring you nothing but pain and negativity---when they offer their 2 cents' worth simply say "Good to know. Goodbye."

 You won't be sorry.

 It's too exhausting listening to those who have never been in your shoes and are coping by merely projecting their own dysfunction and guilt onto you.