As everyone knows, the progression of Mary Jo's Huntington Disease continues to impact her and our family. I'm sending this email to all of you because you are closest to our situation and you have expressed concern about our family and how we are doing and what can be done to help. I readily admit that I have been struggling due to my job situation, all the care-giving responsibilities as well as concern over long term financial planning. My cousin Karen has offered to spearhead coordination of efforts to try to get more regular support for our situation
I've been thinking about this for awhile but it's obviously time to get a better support system in place to help me better manage everything for my family. There are many things that I could use help with, they are the things that we all have to deal with to manage a home and live our lives every day. Mary Jo is not able to do much at all anymore and basically cannot do even simple tasks without some level difficulty if at all. This is probably going to be a long list but it's a wish list really, whatever skills or things that people enjoy doing they could help out on, so if you like to vacuum or clean you could help out with that. This is brainstorming and just a start but here it goes.
Note: My sister Beth is going to be coming out to visit/help and she'll be in town from 10/11 to 10/22 so I'll be working with her on some specific things but the tasks listed below include the types of things that we'll need support with in the future.
- Cleaning and vacuuming/cleaning floors. - Decluttering/downsizing and organizing (we have alot of stuff!) - Gardening/outside home tasks - General household cleaning - Interior design type stuff, including hanging pictures and any other ideas people might have - Meal planning/schedules--setting up a more specific daily routine or schedule? - Companion visits with Mary Jo, I'm thinking that going walking with her or doing some specific activity would be be more helpful to her than going out to breakfast or lunch, although that still would be a fine option! - Household projects, need to include this also because I still need to get the floors finished and the Master Bath updated for Mary Jo. May need help or feedback just for a sanity check before I move forward with anything, costs are a concern but MJ's bathroom especially needs to get done as I need to help her now and she is not able to bath alone without stress or problems.
Basically, I have lost my wife to HD and I need help with the all the tasks that a healthy spouse would normally tend to that I now have to manage everything by myself.
I understand and respect that we all have personal and family issues that need attention and time is a limited resource for us all but it's time for me to reach out and see if anyone can help as we try to deal with the progression of Mary Jo's HD.