should I stay or should I go... noooowwww

mommyandme (m&m)

opposite world:

yes = no, girl = boy and visa versa.  Oh my goodness, the communication issues. So baffling. 

The last couple of days have been very trying for me.  I actually felt my skin crawl, needing to get awaaaayyyyyyy!!! I’m thinkint it’s time to step back even more.   Although I am the primary caregiver for my mom, I fortunately have respite help.   But I must get mooooorrre! 

Tuesdays I’m usually “it” except for the fabulous hospice CNA that comes to shower/pamper momma for about an hour.  Today I took a first Tuesday (since moms been here) with added time off. Oh brother... I loved it. Good day for mom too, actually. win/win. 

Anywho... I settle in this evening at about 5:00 pm  Mom decided it was time for bed... so early, ugh  I know that means at 9:00 or so she’s extra confused.  But I know, it could be way worse, way way worse  You people in here are saints  My ma is an easy gig behavior wise.  Focus Focus... back to now, it’s only 6:15.  So, I try to get her to get up out of her chair herself to head back “home”er... the bedroom, cause she can do it herself but...she’s spoiled   She decides that I “just don’t want to help her” as opposed to her using a little bit of brain power to do it...I do help her of course. She gets in bed, speaks as if I m making her get in bed even though I’d like her to stay in the living room with me.  So contrary  ... oh my goodness.  Then it’s complaint this and complaint that and I apparently don’t care and she’s just poor eeyore and I’m the reason for it all.  I ask if she’d like music or tv or anything that could make her happy  She complains about quiet so I read that as she wanted quiet.  Therefore,  I left her in the very light and quiet room. 

Here’s my question: 

Should I or shouldn’t I put on the TV or music anyway? Even though I couldn’t really decipher what she needed.  Is it so early that she needs that even though she can’t tell me what she needs? Should I make an executive decision without her input? 

I could be having a mini mental breakdown these last days.  I appreciate you all so much!  I feel safe enough just rambling here with my neurosis.  Thanks for reading my blah blah blah.  And... for being real. 

lovebonita

Thank you for making me feel less alone, I also am my Mom's primary caregiver with some weekly help.  I also take her to a day program twice a week which have become my most magical days.

I agree, the folks on here are saints.  I know my Mom is in way better condition than some but I am so tired, so drained and so ready for it to be not on my shoulders to carry anymore.  I tend to just not ask anymore, I either will be faced with deeper confusion or no real answer anyway.  They simply can't determine a direction on anything anymore, big or small.  I decide when she bathes, what she eats, where she should sit, what she should do when she sits, when she goes to bed, her activity for the day etc. etc. etc.  it is endless.  

Recently I have been grappling with the biggie, to place her in care now while she can still walk and talk or later when she will no longer know what is going on around her as much.  She is mid stage 6 and is starting to have incontinence issues, looks at a toilet sometimes likes its a spaceship and doesn't remember all the steps to successfully complete toileting.  Lately I have been trying to imagine what she would say to me if she was in her full health and could look down and tell me what to do, what she would want for herself and for me at this point is the hardest part of the entire decision.  

My Mom also gives contrary answers, pouts and thinks I am awful hard on her at times.  Today she told me she was going to throw away her shoes because I asked her where she was going at 7 AM.  Mind you she had her breasts tucked into her pants and her giant purse full of god knows what she picked up around the house ready to roll out the door with her.  She tells me she wants to go "home" at bedtime and I have learned to interpret that as time to go to the bedroom.  Sometimes it's awful early, sometimes it's not early enough.  Uggghhhh, these days are not easy.

Take care of yourself, you reminded me of me tonight.  Wouldn't it be nice to have someone step in just to make the decisions just one day? XO

Teresag56

Going thru the same issues here with my mom

. My shoulders are tired...I thought I could be a caregiver but it is so hard somedays...and my mom is not that bad...except her memory and mood swings. But I have all the decisions on me...what she eats where she goes...and one I gave up on is bathing and hair washing...she puts on clean clothes and kinda washes off so that is good for right now....

mommyandme (m&m)

lovebonita, 

I’m sorry for you (all of you) that I’m not alone, well, kinda. It’s definitely bittersweet. Thank you for responding, I feel you.  Your words helped me, today is a better day.  I’ll just hold this moment for as long as I can.  

Teresag56,

Thank you! We are not alone in what feels like such a lonely time, how long will this last? Every day is different but the same. So helpful to have understanding.  

I wish peaceful moments for all of you today, successful moments too. 

GothicGremlin

Oh man, I hear you so much about the communication issues.  It's pretty stressful, although occasionally a little humorous.  The latest communication issue is about her cat.  She's been obsessing about the cat (Jezebel) for awhile now. Over the last week she's been telling me, "Jezebel is being so good." It took me awhile to realize that "good" means "visible".    Jezebel is black, and blends in with dark furniture so my sister can't always see her, even though she is, actually, "visible". 

Whether or not to make decisions for your mom?  What I've tended to do is to give my sister a choice - would you like the TV on or off? She usually does okay if the choice is binary.  I've learned with her not to ask open-ended questions, "what would you like to watch on TV?"  But I know that everyone is different.

Every day is different but the same.  So true.

And lovebonita - when/if to place?  For me, I've decided that I will place her, but it's going to be when she's a little closer to memory care.  I know that I just don't have the skills to handle a late stage 6-stage 7 PWD.  Could I rise to the occasion?  Maybe?  But I think she'd be better off in memory care.

Wouldn't it be nice to have someone step in just to make the decisions just one day?   I'd love that, but on some days I'd be grateful for even a hint of a decision.