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Have NO idea!!!

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  • Have NO idea!!!

    Dear Everyone...

    First, PLEASE forgive me for writing this in English, but I am living in Germany and just want someone to talk to that may understand me.

    My DEAR Father has Alzheimers and my Mother and I are the Caregivers that are looking after him at home.

    My father has been in the late stages of Alzheimers for over 3 years now, and as many people know who have had to live with family members having Alzheimers, this is very difficult - these words just do not seem to explain what it really is like!

    I have called many doctors(Supposed Experts(?)) in Munich asking for help with my father as the medication that he has been taking to stop his repeated shouting is making him shout more and more - their response is VERY dissapointing!

    CAN Any of you imagine what it is like living with a person who shouts VERY loud once every 5 or so seconds for over 10 hours - sleeps for a few hours and then begins shouting again... I can PROMISE you that you have no idea!

    I am writing this email to tell these expert doctors one very very important piece of information which NONE that I have met so far seem to understand... or even care about:

    "The care giver is a person who is under more stress that you can imagine - you may think that you know what it is like, but I can assure you that you have NO idea, yes, NO idea... and when you speak to these Care Givers, please show some kind respect for them and not treat them as a number for whom you have NO time for!... In my eyes, any EXPERT who does this is NOT worthy of this title, NOR that of a Doctor, and should not be interacting with patients having Alzheimers! This is a VERY Cruel Disease and most people turn their back on people having this disease - so RESPECT to those people who fight to deal with this disease affecting their loved one through to the end."

    All the doctors that I have met so far seem to have one major problem and that is to open their heart to Care Givers and patients - why is this so difficult???

    The REAL doctor in my eyes is one which will always try to LEARN from a caregiver as this is a person who has been through more stress and frustration and learned the hard way through trial and error... this can not be taught to anyone by a book - these Care Givers are the REAL Doctors!!! All I seem to get from a Doctor is one-way advise and never one who works with me to find a solution. Again, why is an Alzheimer patient always a NUMBER?

    I have hope, and I will continue to look for that special Doctor out there who treats patients and Caregives with an open caring heart. This person is so vary rare and is somewhere out there... it is just so sad that they are difficult to find.

    I do hope that someone can learn from this email and allow themselves to become a better person by it.

    A very frustrated and Disappointed Care Giver
    Brendon


  • Communication


    Hi Brendon,

    I read your message and I am quite sure that I found out about the plot of it though it's hard to read and interpret a text in a foreign language. Do you need a doctor to communicate with in English? Or was it just easier for you to have it written down here in your mother tongue?

    I don't know, if it helps, but I am also faced with some problems like your's in connection with my mother-in-law. She moved to an old people's home by end of April. The philosophy of this home seems to be a bit different from what I regard as being respectful for the inhabitants. I agree: Care Givers have a heavy job, and they need physical and mental support from "experts" quite as much as the person(s) they care about. I will fight for a change of philosophy of that home as much as I can - that's what I owe to my mother-in-law.

    I do hope that you will find an expert that diserves this expression on him.

    Good luck!

    Anke

    Kommentar


    • RE: Have NO idea!!!


      Dear Brendon,

      at this web page
      http://www.alzheimerforum.de/2/8/1/1/sprechst.html#D
      you can find specialized Memory Clinics in Germany.

      With kind regards,

      Spruth

      Kommentar


      • RE: Have NO idea!!!


        Dear Mr Spruth,

        Thank you for your information, but I did use this page to look for a specialist and further to my contact with "this Specialist" I decided to write the email that I did...

        I hope that they can learn from this email... I hope that other families like mine do not have to go through this situation like I have...

        The BIG question people should ask themselves is:

        "what does it take to be Kind to someone... to smile when they talk to them and to hold their hand a give it a gentle squeez?" The answer to this apparently very difficult question is NOTHING! So why is it so difficult???

        Thank you to you and Anke for responding to my email.

        Kind and Sincere Regards,
        Brendon

        Kommentar



        • RE: Have NO idea!!!


          Brendon:

          Your mail seems to me that your prior problem is to cry about this very sad problem in this world.
          To accuse ..whom ?...to find no understanding...lonelineless...
          incompetent doctors, bad friends...no way to going somewhere with this big trouble ...for frustrating ways and the evil fact is, for you, I found no solution nobody does anything ....fill in more forms....we will see....true cruality...

          Plese be assured, your are not the only one ..there are a lot of caregivers...here and around the world...they all try to do their very best....are you looking for help or would you like to stay alone ?

          Yours words seem to me a cry...for tears that are spent in this www.... very lonely at night....................would you really like to talk about this daily problems, the loss, the pain, this enclosement ?
          This might be a strong question (excuse me, do you ? )..but there will be no help, except you want it, and you compromise with this AD ...to come through over for this horrific disease...to learn about this and to go with it...

          I'm looking for you in this days...answer or don't ..it will be your decision...and why don't you share other caregivers ?
          In Gemany we are over 1 million...most of them are without words...in shame...but a few will talk ..if you want ..with you ..and their experiences....don't be be wordless... www.alzheimerforum.de ...a very strong list with many informations; no emotions BUT behind..there is a list of cargivers, of bloody caregivers, they will understand your pain, you can always share it it wou want, do you ?..for experiences in germany..emotions........rigths...rules.........
          I'm a member in the US too, but Germany is here...the country where we live, with all possibilities which are given....

          Good night ..all the best..don't forget...someones looking for you

          Your Angel
          Auguste D. alias..........
          ...its my mother ....suffering on AD for so long years......
          I've compromised..........

          Kommentar


          • Re: RE: Have NO idea!!!


            Dear Brendon_H,
            I just was reading your letter and I am so terribly sorry about that unbelivable problems you have with your mother! It must be horrible to see how she is getting worse and worse and you are not able to help her!
            I learned meanwhile that Alzheimer is really horrible and the most inhuman illness - because I am suffering of that illness, too!
            I got sick of alzheimer directly after my beloved husband`s death!
            I am still living alone, as I do not want to trouble my children with all that problems and I do really hope that I will die before it will be worse!
            My very best wishes for you! May god help you!
            alfib

            Kommentar


            • Re: RE: Have NO idea!!!


              Hallo alfib,
              ich habe Ihnen eine Privatnachricht geschickt - schauen Sie mal ins Postfach!
              Lieben Gruß
              Leona

              Kommentar



              • Re: RE: Have NO idea!!!


                Hallo Leona,

                ein alter Beitrag wurde wieder "aufgewärmt". In der Tat, dieses Schreiproblem ist wohl eines der heftigsten Probleme, mit denen man als Angehöriger, PflegerIn oder Arzt zu tun haben kann.

                Bei uns ist derlei bislang noch nicht aufgetreten, aber ich frage mich jetzt schon, was zu tun wäre, falls es soweit kommen sollte. Einfach mit starken Medis "draufhauen" und "still machen" (quasi narkotisieren) kann es ja wohl auch nicht sein.

                Aber vielleicht könnte Ritalin und/oder ein Serotoninverstärker was bringen (nur eine laienhafte Analogie: Ritalin wird bei zappeligen Kindern gegeben und normalisiert den Dopaminhaushalt, indem es dieses gezielt - und nicht wild - verstärkt; Serotoninmangel ist bei sog. Schreibabys meist die Ursache). Vielleicht aber bringt auch ein starkes Analgetikum was, welches mit der gezielten Zusatzabsicht einer euphorisierenden Wirkung verabreicht wird. Etwaige bhängigkeitsgefahren sehen hier ohnehin eher als akademische Fragen aus und man kann ja geschickt dosieren. Es kann ja sein, dass dem eine Schmerzempfindung zugrunde liegt, welche der Patient nicht mehr normal komunizieren kann. Derlei gibt es ja auch ohne organischen Befund (sog. Schmerzpatienten).

                Wenn man den Patienten dazu bringen könnte, uns irgendwie mitzuteilen, was er empfindet, sieht oder hört, wäre das natürlich von Vorteil. Umgebungswechsel könnte dann helfen. Vielleicht sollte man auch Stroboskope (Vorsicht bei Epilepsie!) und andere Lichteffekte versuchen nebst Klangcollagen, usw.

                LG
                Egon

                Kommentar


                • Re: RE: Have NO idea!!!


                  Ich habe lange nicht mehr auf die Forumseiten geschaut, weil ich alles verdrängen wollte. Aber leider funktionierte dies nicht!
                  Inzwischen geht es mir zunehmend schlechter! Ich lebe immer noch allein im meinem Haus in NRW! Mein Sohn meinte dieser Tage, ich soll mir halt ein Zimmer in seiner Nähe (Raum Stuttgart) mieten!
                  Aber ganz allein in einem Zimmer sein, kann und will ich nicht!
                  Es ist schon schlimm genug, daß ich allein in meinem Haus leben muß! Ich bin ziemlich verzweifelt, weil ich nicht weiß, wie es weitergehen soll!
                  Gibt es eigentlich ein empfehlenswertes, gutes Heim im Großraum Plochingen? Für einen Tip wäre ich sehr dankbar! Alfib

                  Kommentar


                  • Re: RE: Have NO idea!!!


                    Liebe Alfib,

                    da Sie doch in einem Haus leben und über genügend Platz verfügen, wäre es doch am besten, wenn Sie sich eine Pflegekraft ins Haus nehmen. Ich bin sicher, dass das der bessere Weg ist. So können Sie in Ihrer gewohnten Umgebung bleiben und sind trotzdem nicht alleine. Hier bei uns im Ort (Main-Taunus-Kreis) leben sehr viele polnische Pflegekräfte, die nahezu alle sehr gut Deutsch sprechen und häufig mit Ihren Schutzbefohlenen spazieren oder einkaufen gehen. Es entwickeln sich oft sehr freundschaftliche Verhältnisse.

                    Wie weit wohnt Ihr Sohn denn im Augenblick von Ihnen entfernt?

                    Einen andere Möglichkeit wäre eine Wohngemeinschaft mit ein paar anderen Betroffenen.
                    Allerdings denke ich , dass es für Sie wirklich noch zu früh ist.
                    Wir können uns gerne noch über andere Möglichkeiten austauschen.

                    Lieben Gruß
                    Leona

                    Kommentar