A daughter's role reversal

[dnat]

Hi
My mom was diagnosed with bulbar onset ALS in Sept 2008. She's 63 years old. The disease has progressed much more rapidly than we had expected. It's been really tough for us, as a family, to see. Generally her mood has been pretty optimistic but it's almost scary. She really doesn't talk much about the disease and how it's impacting her. I mean it's obvious: PEG tube, wheelchair, Hoyer lift, etc) She really only has use of her right arm but that mobility is slowly dwindling.
I try to spend as much time as I can with her and my stepdad. But the reality is that I live on the East Coast and they live in the Midwest. I'm there for 2 weeks (at least) every month or so. (I quit my job to help get the family moved into an retirement community + help to care for my mom as the ALS progresses.) In the meantime I try to stay in touch with daily phone calls. I talk to my stepdad and periodically my mom will chime in on her Dynavox. But generally it's the same thing: I love you, good to hear your voice.
I could go on but I'm posting because basically I'm frustrated. I feel like my mom has withdrawn. She used to be so active but due to fatigue and the progression of the disease she's a whole different person. She spends her day doing sudoku and crossword puzzles. She rarely leaves the apartment. People come to visit but I'm not sure how much conversing there is...and whether she really engages people. Since receiving the Hoyer lift, and the practicalities that go with it, she pretty much stays in a nightgown.
My step dad does what he can when I'm not there but he is suffering from Parkinson's (and he's 70 years old) There is some help coming in the morning and evenings. He's doing what he can and trying to leverage the help that comes in as much as possible. He's very much in to making sure my mom has as much say in her care and how she's treated. But I've come to learn that she's been in the same nightgown for the last week! And I'm not sure there's a sponge bath in between the weekly shower she receives. I could go on. These are her choices.
I know there are bigger fish to fry, but I'm losing my mind thinking about her trapped in her body with little to do and sitting around in dirty clothes. I know she doesn't want to trouble people or be a burden. But it makes me question her decision making abilities because this is not the mother I grew up knowing.
I love her so much. My heart aches. I feel terrible for writing this stuff down but I need help thinking clearly. I don't want to treat either her or my step dad like children...but it feels that way. I want desperately to have my mom back....but the roles have definitely reversed.
Thanks for your help.

 

[paleshia]

dear dnat, i am so sorry your mom has als. as you know , als changes you forever...your mom has changed, but her love for you has not. you can't have back what you are mourning but you can treasure the relationship you still have.

as far as the daily living needs, talk to your stepdad, is she refusing to be cared for (the bathing,etc) or do they need extra help, ormaybe she is just plain comfortable in her pj's.

many have said it, but i will repeat..als is a family disease....and one from which you are suffering. welcome to this forum family who share your suffering.

 

[dnat]

Thanks Jen. This has really been hitting me hard lately. And I seem to focus that energy worrying about her personal hygiene...or what I see as lack thereof. I know it's a long list of stuff that needs to get done every day (arm exercises, leg exercises, breathing therapies, PEG tube feeding, etc) but I worry that mouth care and general personal hygiene go out the window. It's my way of grieving and controlling a situation that's out of control.
She's not living in squalor but men don't appreciate the same things as women do...and my stepfather has different standards and is doing the best he can.
I just want to scream. I'm so sorry....

 

[paleshia]

so go ahead and scream and cry and cry some more. this whole thing stinks...i am just trying to figure out how to manage all this. for example, in the past, i would shave my legs everyday, but since i can no longer do it myself i do consider the burden on my husband and would never expect him to do it everyday. although putting on deodarant...that is a must! i have decided some things can wait...and some can't. my nails are't as pretty and i do miss being able to style my hair (but hey, i can still brush it), but there are so many things to get done in a house and to take care of a pals...some thing has to give. ask your mom if she is happy with how she is being taken (privately, of course) ask if there is anything she wishes she could have done for her. then see what you can do.

thanks for loving your mom so much.

 

[halfin]

I'm sure it is hard to see your mom changing like this. My own mother has been going down hill this past year (a stroke, not ALS) but she is 88, it is to be expected perhaps. Still it is heartbreaking, and with your mom at a young 63 it must be very hard.

And yet, I have read so many stories here of how people handle the disease, frankly I have to say that your mom is handling it with great strength and courage. It is so common for people to either be in total denial, to become bitter and angry, or to drive their loved ones crazy with demands and orders all day long as they try to keep control. For your mom to still be keeping her mind active with crosswords and sudoku means that she has the strength to adapt to the hardship she is going through, and the courage to maintain her spirits in the face of what she knows lies ahead.

I'm sure you're right that the changes in her hygiene are hard on her. She has had to make the difficult adjustment to think about what is truly important and what is not, given her limited energy and abilities. She has given up so much, and yet she goes on. Not many of us are able to handle the terrible burden of ALS so gracefully.

You need to try to follow your mom's lead and draw on the strength you have received from her. Don't pester her to live up to your expectations. Find out what she wants and do all you can to support her. You are making great sacrifices to spend so much time with her and I'm sure she feels loved and cared for. It is a hardship for everyone but we all have to find a way through it.

 

[dnat]

Jen and Hal - thank you so much for sharing your experience and offering support. It helped put things in perspective....for now.
I will be attending the local ALS Caregivers Support group this weekend to talk through more of these feelings...and hopefully am able to offer some help to others as well.
Mom's condition keeps changing. And it's adjusting to all the quick change that is so exhausting...and frustrating...for us all. I look forward to being with her for 2 weeks - so much easier than trying to help from far away.
Thank you from the bottom of my heart and sending out positive vibes in to you and universe at large.