What I wish others knew about Alzheimer's
It changes every day.
Hi
our members can definitely agree with you on that. Each day is a blessing but also a new experience. How do you try to keep a routine? Jill (Team Member) No it doesn't change everyday. I want it the same everyday. When you change it that's when all the fuss starts. You bring in a new scent of candle or washing detergent now all of my clothes smell weird. You over decorate the house with blinking lights...blink. blink blink! I can't think straight. You put on loud music or have a bunch of people over that say, " Don't you remember this or that?". No I don't. I like things slow placed with just a few people. I have to rehearse over and over how I am going to get through just one hour with my speech therapist the entire Thanksgiving meal. Don't get me wrong I do want to be included but no one makes any inclusive decisions about people that have Alzheimer's. No one bothers to really look at it from my perspective. I showered... but I am incontinent so I don't want to smell bad, I might have trouble eating, well I won't eat much so I don't make a mess, I don't want to make a fool of myself so I won't say to much. I am trying so hard in my head not to be an embarrassment to you. How can YOU not possibly see this!?! I am literally losing myself, my ego is dying, do you not have any compassion that I have holes in my brain. I don't want to bother you. I don't want to bother anyone. And I get the message from your looks and your words that you are consistently annoyed at me. So you see I just stop talking. I just stare into the abyss, I don't eat. I don't drink. I just whither away. That is what this disease of Alzheimer's is doing to me and your loved one, they just can't say it anymore. @DonnaFA @JillBrodie @
, I feel you when you say that you want it the same every day. It is hard when things change, and you don't feel sure-footed when new situations sneak into your path. And sensory issues can be a problem.
I want you to know that what you share here is so important, this sharing of your experience, thoughts and feelings helps to bring understanding, increased empathy and compassion from all the people that read it. Your advocacy is a gift for all people affected by Alzheimer's.
Is there an event that is coming up soon that has you worried? You have always faced challenging situations with such grace, and I understand just how much work you put into each encounter. I'm sending you lots of (((hugs))), love and light. - Warmly, Donna (Team Member)
I have a huge meeting tomorrow with an aging brain specialist who is my one chance to be put on the infusion therapy before you the Alzheimer's progresses to far. I have written my experience in a typed piece to present to her. She is a renound psychiatrist at The Cleveland Clinic. This is a big deal. I know that I will have to answer a lot of silly questions. I will have to be very polite and quiet. I must be on my best behavior to get this medication. I know my husband and my entire family want this for me. I have my dress, shoes and purse all ready to go. At least I get to get a coffee before the trip which makes me really happy. I hope my last post didn't sound too mean. I just wanted people to know we do have feelings.
I am wishing you all the best for your meeting today. It sounds like you are very prepared. I am glad you have written everything down, I hope that gives you some comfort in knowing you will have all the details in front of you. I hope you are getting your favorite espresso drink from Dunkin. That will be a nice treat for you. Our community is here for you to share openly and honestly in a very safe space. The way you are able to articulate yourself really helps others in this space understand what you are feeling. We want you to be able to express yourself freely with no regrets to speaking your mind. Please keep us posted on your appointment. Jill (Team Member) , it wasn't mean at all. It was beautiful and poignant. Many times carepartners ask her "I wish I know what he's thinking?" You being willing to share those raw moments are so much more helpful than you know.
I'm so excited for your appointment! I hope she does approve you for the infusions. They are so hopeful, and with the nasal spray on the horizon, it is one of the best options for treatment. Please let us know how it goes! Hoping for good news! - Warmly, Donna (Team Member)
