What can you actually DO?

[starente15]

It seems like a crazy question, but I keep wondering what can I actually do to help? So far, I've come up with meal plans and a shopping list, reminders of what to take when they leave the house, i.e., snacks, water, etc., bought a cane. I don't live nearby and have to fly to get to visit them. I have a trip planned this weekend and am just wondering what else I can do to create some structure in a chaotic environment.

 

[Nikki J]

Cook for the freezer when you are there. If there are people local who are willing to help set up an account at lotsahelpinghands dot com. Organize the medical records. Put together a go to the Emergency room bag with medical summary, snacks water juice box toothbrush etc. Look at the house and see if you can identify potential fall hazards. Do any little tasks around the house that need doing.
And just be there for both your parents. Above all they need to know how much you love them and that you will be there for them

 

[starente15]

Thanks Nikki. Great ideas! I contacted a local college to see if any of their culinary students could come in to cook/freeze meals. Waiting to hear back. So much to think about.

 

[Mike in Maine]

I’d get them and you an I-phone (facetime) or set up Skype (SP) on their computer. That way you can check in with them each day and actually see their facial expressions, will help you to determine if all is ok. Will make it harder for them to BS you. If it isn’t you can still reach out to where there are services near your folks so that they can be provided what they need. Heck just seeing that they doing OK every day, if nothing else will give you a warm and fuzzy.

Mike

 

[MaxEidswick]

>set up Skype (SP) on their computer.

Mike, that is a terrific idea! And fun.

 

[cheerleader]

Also suggest a Freedom Alert or Guardian system that he can wear. Emergency contacts can be programmed in, as well as 911 on some. Then when mom is out on errands, he is covered. We programmed in 2 close neighbors, my cell and than 911 if no one else could get there. If he is a veteran, VA will cover this and there are no monthly fees. It hooks into a landline phone system.
Depending on what parts of his body are affected, things like a small table, tray next to his easy chair is helpful to hold beverages, pills, etc. our daughter got my hubby a wedge shaped lap tray from Brookstone to hold his computer and keep it from sliding into his lap. A neck roll is great for support if he has bulbar, neck support issues. Because my hubby is on an all liquid feeding, we have several light weight plastic cups with handles that are easier if the arms are weak. A reacher next to his chair is helpful. None of these are expensive but all make life easier. Thanks for being a great daughter/son? Every parent is happy to have raised a loving child!

 

[cheerleader]

Phooey-my comments went to mods- add to my list of helpful things, one of those microwaveable neck pads for heat! My hubby uses his several times a day for the neck discomfort from having difficulty supporting his head. ( it would help if he'd wear his neck brace but.....
If dad doesn't have pill containers that hold 7 days of pills, they are great. We use an a.m. And p.m. container which I fill each week and they are on his tray by his easy chair.

 

[Diane H]

Talk with them about how their home will function way down the line. There will probably need to be at least one wheelchair ramp added, the bathroom may need some work or a big remodel to make it accessible. That means accessible for a power chair, not a manual chair or a scooter. (A roll in shower is nice but not a necessity.) Is there space on the main floor for a bed room if the house is a two-story? Look into a wheelchair accessible vehicle.

 

[gooseberry]

I would talk about wills and legal things like power of attorney. If they have them make sure you know where they are. I would read all the stickies on this site and make a list. There are many compiled great ideas. Max started a thread of useful things. Lots great ideas there. Mostly I would say being able to think clearly now about things and getting them in place will be so helpful when the crisis hits.

 

[gooseberry]

If you can help them set up a support system for help with doctors appointments, rides, company, someone to just stay at the house or run the errands, respite care, etc it would really help long term.

 

[GregK]

Wills, power of attorney, medical power of attorney, last directives (ya, I know, but it's better to get it done early).

You might also consider bringing up a living trust in place of the will.

 

[starente15]

Great suggestions!

 

[SMP51]

visit, visit, visit.....and get others to visit.
seems as this disease progresses people visit less, it can be a long lonely journey,