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Rough evening

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  • #837616
    dragonmedley
    Participant

      Some of you may recall that last year at this time, I found out my dad has Alzheimer’s. He’s responding extremely well to the meds, but he’s not back to where he was when he left for Nepal in Nov. 2009.

      He met with the neurologist yesterday and she said he was a responder (which we had gathered all on our own) and that physical activity helped (so my mom observed). The bad news? Since the onset of the disease was so early (my dad is turning 64 at the end of the month), the progression of the disease is much, much faster than with people who are affected at 75-80. If it weren’t for the meds, in 2 years, we’d have to place him. As things are, we have about 5 years, if nothing goes wrong.

      While all last year I knew he’d deteriorate, it was “eventually”. Last night, it finally hit me that I’m going to lose my father, and that he’ll slowly become an empty husk. My mom’s been living with this thought day in and day out for the past year, because she looks ahead. All their retirement plans were shot to hell, what was she going to do, etc. I’ve been helping her to concentrate on the moment, to do what was needed NOW, to ask for help from my aunts & uncles in France, that I never stopped to really think what this disease meant – and maybe I didn’t really want to. It’s one thing to rationally say something, and another to really internalize it. I so much want to live in the here-and-now with him and I have managed to do so until last night.

      Now, when I think about my dad, I cry.

      Yeah, last night was really tough…

      Read my books! Volume 1 and 2 of A Dragon Medley are available now.
      http://www.sarahjestin.com/mybooks.htm
      I host the feedback lists, which are maintained by drag0nfeathers.
      http://www.sarahjestin.com/feedbacklists.htm

      #502357
      dragonmedley
      Participant

        Read my books! Volume 1 and 2 of A Dragon Medley are available now.
        http://www.sarahjestin.com/mybooks.htm
        I host the feedback lists, which are maintained by drag0nfeathers.
        http://www.sarahjestin.com/feedbacklists.htm

        #837617
        Purplecat
        Participant

          ~hugs~ I’m so sorry you’re going through this, if you need someone to just rant a bit at, you can most definately pm me.

          #837618
          twindragonsmum
          Participant

            Ah, dragonmedley, that’s a tough, tough row to hoe (as my gra’ma used to say) I’m so sorry. It’s always hard to say good-bye to a loved one and to watch the process happen right before your eyes, well, it somehow doesn’t seem fair… {{HUGS}}

            twindragonsmum

            tdm

            #837619

            That’s the sort of news I dread the most for my own parents. I’m very sorry.

            #837620

            I’m so sorry Hun. Give me a ring if you want to talk.

            #837621
            Grayfire_artz
            Participant

              oooh dear i am so sorry to here this.
              my best thought and wishes are with you.

              #837622
              dragonmedley
              Participant

                Thanks, everyone.

                Read my books! Volume 1 and 2 of A Dragon Medley are available now.
                http://www.sarahjestin.com/mybooks.htm
                I host the feedback lists, which are maintained by drag0nfeathers.
                http://www.sarahjestin.com/feedbacklists.htm

                #837623

                So sorry to hear this, dragonmedley. *hugs* I can understand, at least a little. We’re losing my dad’s mother right now to a nasty combo of Alzheimer’s and Parkinson’s. It’s a hard, hard thing to watch them go. But then, my grandma is over 80 years old. I can’t imagine how hard it must be for you when your father is so much younger. Again, I’m so sorry. *more hugs*

                #837624

                *hugs* It is very hard, and I am sorry that you are going through this. 🙁 My grandpa had Alzheimer’s, and it is a heartbreaking disease.

                #837625
                twindragonsmum
                Participant

                  One of the things that might help as he loses his ability to identify family members comes from a friend of mine whose family dealt with this with her mum. Their hospice people told them that it’s not that the patient doesn’t know who you are, it’s just that they need to be reminded that they know you. The family was advised that when they went to see their mum they should take two photos along with them; one photo of the child when they were small, and at the bottom of the photo print in large letters “this is my daughter ‘Sarah’ when she was 5 years old” The second photo should be one of you today and print on it “this is my daughter ‘Sarah’ today” They said it was amazing to see mum look at the two pics, look at her daughter, look back at the pics and SAY “and you’re just as pretty as always!” when before mum would deny that Sarah was her daughter at all. Don’t know it this will help any, but it helped with their mum’s communication skills. it’s not that they don’t remember, they just need help to realize that they DO remember the family and the memories that go with the family. Hope this helps – you’re in my prayers!

                  twindragonsmum 🙂

                  tdm

                  #837626
                  dragonmedley
                  Participant

                    Actually, we’re already seeing examples of this. My dad is very handy, and now, he has a hard time doing things he knew how to do. Basically, he’s afraid he won’t be able to do, so he delays starting. My mom will start for him and seeing it allows the brain to click back into place. Then he takes over (’cause, of course, my mom does it all wrong) and can finish the task.

                    I can see how these picture would help. Fortunately, we’re not there yet, but I’m sure we’ll have to face this one day…

                    Read my books! Volume 1 and 2 of A Dragon Medley are available now.
                    http://www.sarahjestin.com/mybooks.htm
                    I host the feedback lists, which are maintained by drag0nfeathers.
                    http://www.sarahjestin.com/feedbacklists.htm

                    #837627
                    twindragonsmum
                    Participant

                      Hang in there sweet heart, I know you can. It won’t be easy but it will be an experience that in the long term you’ll be able to use to help others who have to deal with this horrible disease. Please, please keep me posted and I’ll see what more I can help advise you witb. Many, many hug and loves for you and your sweet family – especially your mum!

                      twindragonsmuj 😀

                      tdm

                      #837628

                      I’m so sorry that you have to go through this dragonmedley 🙁

                      My grandmother lives in the same house as my parents and myself (my grandmother and I live in apartments upstairs). My mother takes care of her for the most part, but it’s been about 2 years since we found out that she has this disease and it’s been incredibly stressful on my mother because her other 5 siblings (yeah, 5!) won’t do anything to help. It’s especially heartbreaking because I’ve sat in my grandmother’s apartment with my mother and my gram will ask me about my family – “Where’s your mother? Did she die?”. My mom just kind of sighs and looks at me like ‘it’s no use’. My gram also doesn’t seem to understand day from night anymore. She will often be up at 3am, completely dressed and ready to go somewhere. I hear her from my rooms, waking around her apartment doing “stuff”. My mother says that she’s constantly looking for something but she can never find it. She opens the closet, the drawers in her kitchen, her fridge, her cupboards over and over again..

                      The one positive thing about the situation is that my grandmother has an EXCELLENT attitude through this. I can’t imagine what it would be like if she was sad or bitter about it, but every time she realizes that she’s forgotten something or she can’t get the words out that she wants to she just starts laughing, or she bonks herself on the head like she knows that’s what the problem is.

                      Anyway, I hope this doesn’t make thinking about it worse, dragon – my grandmother’s condition was something that we are sure went on for much longer than we noticed it for, so she was getting no medication until 2 years ago. It sounds like your father has a loving family that will help him through this. My mother has also attended a few seminars that explained a lot to her about Alzheimers and what you can do to continue connecting with your loved one. It sounds like your dad has some hands-on hobbies and I know that keeping stuff like that going is supposed to be a big help with memory. If your dad likes doing his hobbies but is afraid he will forget how, you should definitely encourage him to try! One of the things that the Center that my grandmother attends during the day (its kind of a day care for elderly) does is that they try to play old board games and get them doing some type of artwork. Somehow it seems like that type of hands-on stuff stimulates the brain and really can help in the long run.

                      My thoughts are with you and your father, and if you ever need to talk to someone I’m also here along with all these other wonderful people <3

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                      #837629

                      My Grandmother has Alzheimers.

                      Honestly before she was diagnosed, her and I were estranged for many years. She isn’t (or wasn’t) the nicest person in my life. But I’ve lost people in the past, suddenly and unexpectedly. It was traumatizing. So when this journey started, I made a point to be there. Both for her, and more importantly, for my Dad (who is her primary caregiver and has to deal with her all on his own).

                      This disease has touched many, many people. Take comfort in knowing you’re not alone on this journey, dragonmedley. You have not only family, but people all around you who know what you’re going through.

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