i had to write this -- dan and i went somewhere and his uncle avoided us like the plague-- its to hard on "him" to say hello - dan of course had no idea of the lurker but i seen and of course am hurt by it...

Nancy :

I am sorry you had to deal with those kind of people. though one valuable lesson, is the one who matters don't mind us, & one who minds don't matter at all. Just ignore & forgive those ignorants, its better choice to take for ur own sanity.

Asha

Nancy,

Yes, things that I never thought of before. the crack in the sidewalk, the high lip on the doorway. the thin doorway. The person parking too close to me in the handicap space. Yes, those are things that i think about all the time. I didn't before. People just don't know. they will never know unless they actually walk in your shoes. I am empathetic and compassionate but, I had no idea before I became the sole caretaker for William..what is entailed.

I learned about the crack in the sidewalk but spilling william onto the sidewalk out of the chair. I have not repeated that mistake.

Just learn to ignore those ignorant people. But, for this experience I would be as ignorant as they are.

Ruth

Nancy,

The saying goes "Nobody knows until they have walked a mile in my shoes". What you are saying is ever so true and the same holds true for other people you talk to that really has no idea how hard being a survivor and care giver can be!! The biggest thing is each case is different and circumstances changes every day!!

Your plate is full and I recognize that in all the care givers here! It's very hard caring for a survivor and I felt so helpless as my wife struggled with my condition so I thank God I'm doing as good as I am at this time!

Nancy; I run into people all the time, mostly from work or Bruce's Rehab. As a Nurse, I certainly do not want to chat and interact with Patients on my time off. But you look at the light in their eyes when they recognize you and want to introduce you to their families. Bruce used to laugh when I got back later than expected. Always knew I ran into someone.

Bruce often goes off by himself in the WC, so when these people see me, they say "So where is the big guy?" And then go off to find him. As with all of us, my heart sings! We all know the great partner we have. Bruce is just so special and I do so appreciate those, during their busy time off, who take the time to seek him out, say Hi. I don't think many people realize how important that is. Professionals do and that is why they take the time.

Onto friends, family. My best gift is that if you can not deal with this, please stay away. I do not need your "rocks" , I have enough of my own.

People do try. If they do not pay attention in how to "manage" Bruce, it appears so much more difficult. And those who have no patience, step away. That is one of Bruce's best friends. He will not extend himself, but if you listen to Bruce and watch and learn, Bruce, physically, is a piece of cake to manage. It is mostly spotting. I am half Bruce's size and I do it every day. And when you come, I have him packed, toiletted and ready to go. I will even break down and load the WC. Can you imagine if someone did that for us without having to pay them?

Our Brittany comes and absolutely refuses to use the WC. Bruce will walk with her. If I do not have his Hemi, I am in deep trouble. Her expectations are you take the WC, make sure Izabella is safe and I will handle Bruce. She is our treasure. And she is the only one who gets away with this! His baby!

Let them go, honey. You can not change them or make them care. You protect Dan from the heartbreak as best you can. As we all do. Dan knows exactly what is wrong with him. He certainly does not need anyone else to remind him. The fact that they do not call or visit is example enough. Go easy and don't dwell on those who don't deserve our time or consideration. Debbie

I know - I know --- funny, formerly working at the jail for years i meet up with inmates who do the same thing as your patients..what to chat tell me how well they are doing and meet the family... I was tough but fair and they recognised this and it was never "personal".. ....... i was caught off gaurd by an uncle doing this i watched him watch dan - and seen him make the conscience choice not to walk over. Yes dan is aware of who is there and who is not. and he now refuses to even stop and see his mother even though i offer. she makes a trip 150 miles to fargo to see the other "good " son, but will not stop in jmst half way through- so i think he has decided he is done as well.-- I thought i was and wish i was beyond this - "could not stoop to their level" but i was taken off gaurd.. i'm ok now just a little hurt for dan.. oh well moving on in life.... nancyl

Nancy,

Wow you can almost expect the stares and ignorance from strangers but it really hurts when it comes from your family. I can only imagine how you must have felt.

And even though it’s hard on the survivor, it’s not a picnic for the caregiver either. I take my hat off to caregivers because you all have to take up the slack for what the survivors can’t do (be their eyes, legs, etc) so it’s double work for you all.

Well I’m sure Dan knows how much you love and care for him so that will give you the strength to keep pushing ahead and nothing or no one else really matters. At least you go each other even though it would be nice to others on your team.