Due to documented cognitive impairment, I had the “choice” of going into a Power of Attorney or being brought into court and appointed a guardian. It took me a while figure out, and I know I was making bad financial choices and needed help, but it was actually a guardianship for all intents and purposes. Losing control, knowing that is happening, and the cognitive part that hit me so hard, has been the hardest part of MS for me.
I think it’s that loss of control, someone telling you if you can keep $30 towards my daughter’s birthday..every time I don’t get “my” way, I buck it and resent the loss.
Acceptance is the way to peace, I know and I will get there.
There are just different things I control-smaller amounts of money I have to make choices about.
Today I grieve the loss, take a deep breath and eventually embrace or accept the change.
We are all mourning our losses in different ways, but we’re doing it together-not alone.
We are all reaching down to find the will we didn’t know we had, to go on.
I think that for many of us, it's the cognitive changes that most frighten us. I got really scared when, during my relapse, I couldn't remember things and couldn't think clearly. I paid some bills twice, but forgot one, even though I should have seen what I had done. It really scared me about the future.
You're so wise in realizing that we have to keep adapting and accepting with MS. You show so much courage, and so I know you'll do well in facing this, even though it's hard.
Hidden You have made me realize that there is always a way to deal with things that 'ms' presents. While it might take away some of our control, we need to make plans now before it takes control of all of us. Thank you for this post.
I also worry about the cognitive stuff too. Some days my mind won't work at all. Other days it's fine or at least I think it is. Some times I feel like everyone is trying to make me think I'm crazy because I can't remember a conversation a day before yet sometimes remembering is clear as a bell. I hope everything works out for you.
You are so brave to recognize that you cannot do this for yourself anymore. I have had to hire someone to help my son with the college and scholarship application process. I recognize that there are too many variables for the current me to adequately handle. I passed the bar exam in 1998, but college applications, test prep dates and scholarship deadlines are FAR too much for what is currently left of my brain to figure out accurately. I say all the time how much I wish my son could have known me when I was still smart. We could have such interesting discussions, because he is so intelligent. I ask him the same question over and over, say the wrong word or can’t recall a basic word like remote or dishwasher. I am embarrassed and ashamed that I am not capable of a basic conversation. My son will tell me something and literally 2 minutes later I will ask him something about the exact same thing. I even say “ I know you told me 3 times already, but what time are you getting picked up?” It is humiliating and I know that it must be impossible for him to imagine that I was ever any other way than this. The older he gets the more I decline and slip away.
I know you think you should know everything about getting paperwork done for him to go to school but and this is a very big but it isn’t easy. Everything has changed since you and I have gone to college trying to get that paperwork done on time is just frustrating. They seam to ask the same question again and again but in other ways and if you need someone to do it for or with you don’t worry about it. It is good to have someone there to help you. You need to have your son right there with you so that he needs to know how to do it. I’ve been doing it for my son and he needs to be doing it because those fasfa forms are a pain in the %#€ if you know what I mean.
My daughter has really distanced herself from me, but she’s polite and respectful. I have had to learn letting go, giving her space, and realize it’s been hard on her too! It hurt to let go, but it was healthiest for both of us. She will always have my heart!💕 she once she said “your falling is real hard on me! Not so fun for me with girl, I thought!! Ha
bischaar Though I am not nearby, let me virtually pick up a corner of the burden you are carrying and walk a while with you. That's a heavy package to carry alone.
personally the cognitive issues have been the worst for me and i'll never get over not being able to work. before turning 28 i was on ssdi. for me it is beyond cog fog and it all around sucks. good for you for figuring out what will work for you!
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