Mom was diagnosed with bulbar onset 2 years ago

[dnat]

The "anniversary" of her diagnosis was over the weekend. It's all a bad dream.
I'm a part-time caregiver. I share the main responsibilities with my stepdad...however I don't live nearby. I suppose I'm caregiver x2 because my stepdad has Parkinson's and basically is just run down from that and being on call with mom 24/7. (I try to have him get away for a few days when I'm there but now that mom needs our attention all the time it's more difficult) I have a brother but he's not as involved...and I'm having my own issues with him and his life choices with this regard.

Anyway....it's really hard for me to deal with all this....to watch my mom, once so active, deteriorate. She currently only has very minimal use of her right arm so she can't do anything on her own...and that includes playing Solitaire on her iPad which she could do...and tries to get others to do 24/7. We're trying to start reading to her or watching movies....but she's just not interested. We use a lift to move her from her recliner to the commode and to the bed. Trying to keep her moving to avoid any sores forming. So far so good.

I love my mom so much. I want to know what makes her happy, what she wants. All she does is shrug. She's doesn't often use her modified Dynavox or letter board anymore. It's a guessing game. Which I think you know how frustrating that can be at times. I try to be so patient but at times I feel like I'm up for the "Worst Daughter/ Caregiver in the World" award.
I have asked her if she's afraid of dying (she hasn't yet signed a DNR). She managed to let us know that God will know when it's time for her to go to heaven. It's comforting to know she's at peace but terribly sad to even be confronting these issues. In the meantime I'm surrounding her with a picture wall near where she sits, putting bird feeders outside the window...and even bought her a Beta fish (aka "trouble) to keep her somewhat occupied.

She was recently diagnosed with a urinary tract infection. I'm hoping this doesn't lead to further complications. She lives in Canada and has a great deal of support but it still never seems enough when you (caregiver) are on call 24/7.

In an effort to get past the day to day routine we try to focus on fun events. I was recently married and she "rolled" me down the aisle and had a great time visiting with family and friends (as much as she could). Now we're focused on the ALS Walk...gathering friends, making t-shirts and celebrating the courage and determination she has and continues to show. The next milestone I'd hoped to share was a pregnancy but with all the stress and travel that in itself will truly be an act of God. We keep trying though. I just wish I didn't feel like I was losing my mind on the sidelines.

Thank you for listening. I know there are many others in the same boat. I'm in therapy and told that I shouldn't feel so responsible...especially when I'm not there with them. But that's easier said than done.

 

[pjm220]

As someone with bulbar onset ALS, I thank you for sharing your experience, frustration and fears. This "condition" (as we call it) is so invasive and so consuming for the PAL that it can make us self absorbed. It is important for us to remember that it isn't just happening to us, but to our loved ones as well. Reading your post was a good window into what my own CALs might be feeling. You are a good daughter. Know that you are doing what you can and that there is no easy way to live through this. Your brother will need help after your mother is gone; you will have more peace with it than he. God bless you and your family.

 

[dnat]

Thank you so much for your response. How are you doing? You are recently diagnosed?
This experience has completely changed my outlook on life and I hope that once I have the time I can help others who are going through similar situations. If there is anything I can do please let me know.
The purpose of the post was to share current thoughts and feelings. It's been really rough since mom's lost any form of independence and now with this additional infection....I'm just scared. But who isn't.
We're organizing Team Carol for our ALS Walk. Courage, strength, faith and hope....complete with her favorite dragonflies....will be on our shirts. We're in this together...all of us.

 

[pjm220]

I am doing well, thanks for asking. My first symptoms emerged last November. I am now mostly laying down and unable to leave my house without help. Mine has progressed quickly. My husband and I decided to address the symptoms rather than worry about what it was, so we already had made lifestyle adjustments before the diagnosis came.