Good morning ——rb (advocate),

Thank you  for your time and for sharing  your knowledge and wisdom yesterday.  Josh and I are so grateful for you and what you do to help so many during this "new normal" we are facing. 

I have forwarded you  the note I sent to my parents and siblings outlining some of the topics that I broached with my parents and the plans.  Clearly, after speaking with you yesterday, some of these need to be altered (driving issue for one).  I have reached out to my siblings to ask for their help in this area. I will keep you posted and actually it may not be a bad idea to bring this up when you meet with my sisters and Marci.

I look forward to your notes from yesterday.  These will help me know the next steps and how to loop in the family.

Thank you again - so much!

Grace

Hello  ——rb,

Things are moving quicker than I originally anticipated (I think you tried to tell me that). I have been with mom and dad since last Friday, as you know, and have been observing where they are and how things are progressing for both of them. While Dad has a good attitude and is taking his diagnosis  in stride, he is visibly atrophying.:

1. constant coughing and spitting out food when he eats- ( he gets embarrassed but tries to write it off). He has asked that we cut up any meat or non-dissolving foods into small swallowable sizes from now on. AND last night he choked - the piece of food got stuck and he could not dislodge it. He stood up and leaned forward while I pounded his back and finally he spewed it out. Randy, it was crazy scary- the look on his face broke my heart.  

2. facial muscles are visibly weaker- his mouth is open and his eyes are droopy

3. neck is weaker (he was wearing his neck brace while working on the computer) he also holds his head up with his hand under his chin while in public.

4. he is napping more and visibly tired more frequently 

5. he did not want to go to church, preferring to watch the service on TV

6. the trial meds he is taking cause him to lose his balance and he says he feels the lack of equilibrium (driving is not a good idea- in my opinion)

7. he used his wedge to sleep the other night , to prop himself up, because he was struggling to exhale

I have been wanting to talk with them but the timing has not been right. Based on our conversation here are the things I  plan to chat with them tomorrow morning about:

1. funeral arrangements and wishes

2. level of intervention he desires as his body gets weaker

3. plans to put in place for Mom once he passes

4. access to passwords for online bill payment, bank account information and access/ permission, insurance information, car/house deeds

5. the need to start using their mobile alerts when they leave the house ( always really, but we start small)

6. bucket list and daily things he would like to have/do to bring joy and pleasure 

7. the need to use the thickener and to carry it to restaurants ( he has been doing this! YAY!) 

8. bringing in a weekly helper that they can get acclimated to and have ready for when they need more help

9. start setting up his "voice app" so that he can simply press a button to talk and not wear himself out trying to carry on conversations. He has not been doing this and I do not have the name of the app yet.

Lastly, for now, Amy, Heidi and I met with a homecare lady/nurse in this area that just finished working with a young man (37yrs) for 4 years before he passed, who suffered from ALS.   I would like her to meet the parents to see if it is a good fit and put her on the "backburner" for when we need to tap into that resource.  Can you or Troy help me facilitate that?  

Her name is :

————

# ————-

 I will begin a list of Dad and Mom's needs that maybe Stephen's Ministry can help with.

Dad did mention that he would like to have contact with you and Troy, too. I think he feels out of the loop.  I am thinking it may be a good idea to have you come visit him in the next week or so, and have one of my sisters come to listen and assist.  What are your thoughts?

Thank you!  Thank you, for the support and helping us with the questions we need to ask and figuring out the things we need to deal with so this goes as well as it possibly can.

Grace

Hey —-rb,

giving you a quick update. I called my brother  and he called my dad.  The parentals  are heading to Dallas this Monday. My brother has set up the PEG tube surgery with his gastro buddy and  he will oversee the care. 

That is step one.  I have reached out to Wendy to see if she can proceed with the bed - ordering it , getting it delivered and  having one of my sisters there to receive, set up and remove the old bed while the parents are in Dallas.  After that, we are getting mom tested asap. My brother will help with that as well.  

Thank you for calling to confirm the urgency we felt but were hesitant to push.  As Josh said, there is a time to ask and a time to do. It is "do" time.  Josh and I are going to work on a spreadsheet with dates, people to contact, phases, etc so that we can all have equal access. I will send you a copy to get your input.

Thank you so much!!

Grace

Hello R---,

thank you for your patience as I mitigate my time between work, home, sibling communication, church, friends, parental care, etc. I know you understand but I don't like taking so long to reply.Yes, I think a visit frome Barbara would be beneficial and very helpful. We are having our family monthly zoom call this Saturday where I am encouraging my siblings to support and execute that idea. I have expressed my ever swinging pendulum syndrome to you previously,when it comes to mom and dad; I go from wanting to bubble wrap them, provide every available resource and help, to just letting it all go and let them live their life as they know and want it, with their choices, knowing it is not my notion of doing it well, and knowing there will be sticky consequences.The fact is, that Mom and Dad have been "protecting us" for too long and want to continue doing that. They have created a cadence and rhythm that works for them. and do not always share when they are not doing well. Each time I reach out to suggest or encourage a positive change that I think will help them, they stiffen up and retreat. As I see it, and I may be wrong, Dad's priority ABOVE his own ALS issues, is Mom- period. He wants her happy in her home and doing what she is familiar with . He wants to keep everything status quo until absolutely necessary to change something - because change messes with Mom. He gets it more than anyone. He is the one that suffers the most at those changes and therefore, it is my opinion, that he is willing to personally suffer to make it more palatable for mom. They insist on being in the know of EVERYTHING - and if any changes happen or any communication happens without their involvement, not only are they hurt, but  I believe a subtle sense of mistrust is embedded into their psyche.They absolutely love Mo and are grateful for her presence, but STILL do not think they need her. Dad is now using the Trilogy machine- their neighbors came when it was delivered so they could learn and  know how to use it and help the parents when needed. My sisters are visiting frequently and assisting where they can.  Do I believe they would benefit from hospice? Yes. Do I wish they would allow more help to come in and ease their life? A resounding , Yes!  I brought up the idea to my dad of a "Nurse" coming to visit them under the premise of her checking the machines, and tubes etc. He said he would like to settle in with the machine and then consider someone coming. So that is where we currently stand.

I feel like I am in a conundrum wrapped in an enigma. I want so much more and think they would benefit from it but I think the idea will need to come from outside their children.  I am praying for guidance and boldness when needed. I also think, if I am completely honest, let them be as happy as they are, how they want to be- even if it is not the best. 
I am not sure if this makes sense at all.  Regardless, I must end this for now as I have a meeting that I must attend.

Thanks for your ear and for any insight.
Grace

More to come…..