Alzheimer’s -V- Culture and Traditions

[Barry]

Still not feeling to good as my head feels constantly lost in a fog of confusion, which isn’t being helped by the extreme heat and humidity we are having at the moment, its also making my granddaughter Fira and niece Melatie very uncomfortable and they keep crying from irritability which in turn is playing havoc with my mind and it just seems that everything I try to do this week is going wrong.

Then to top it all off today ‘Thursday’ late afternoon Sumi has a prayer meeting for our granddaughter Fira being one year old, I know that her Birthday was two weeks ago but this is all to do with it being a tradition on the day that Fira was actually born and the day that the Gregorian Calendar coincides with the Javanese Calendar which only has five days in the week… yes I know, it totally confuses me as well!!! But it means that this afternoon there will be over 60 guests in the house for the prayer meeting so Sumi, family and friends have been preparing and cooking for the past two days and today it’s extremely busy for something that only lasts “One Hour” and seems to be costing us a fortune, and causing a lot of noisy ladies pounding in my head! And to be very honest all theses frequent traditions and customs is something I just can’t handle anymore as they cause me a lot of anxiety so I’m looking forward to having a day out of the house tomorrow.

But one thing is becoming very clear ‘and that is’ that living out here and having mixed Dementia with Alzheimer’s and living within a community that has ‘NO’ Alzheimer’s society, ‘NO’ day care centres or Memory cafes, ‘NO’ telephone help lines, ‘NO’ dementia support systems and “NO” concept of what dementia is or how it affects a person is just an added burden on my brain and daily life but there is nothing I can do to alter the way things are as I’m stuck between the devil and the deep blue sea of home!!

[Barry]

I really don’t believe it and I’m almost at a loose for words as it’s only just 8-30am and the prayer meeting / thanks-giving for my granddaughter doesn’t start until 4-30pm but my son-in-law has cleared all the seating furniture out of the house without first asking me or even telling me!! So the only seat I have left to sit in is my computer chair (maybe I should go back to bed as I can’t watch the TV) he’s not got the slightest iota of any comprehension of what he’s adding to my condition today!!!

[Canadian Joanne]

Is it not possible for you and/or Sumi to have a talk with your SIL explaining your difficulties? I do think it was more than thoughtless for him to have moved all the furniture, leaving you literally without a seat.

Is Sumi aware of how you are feeling these days? I hope things settle down for you soon.

[Barry]

Hi Joanne and many thanks for your thoughts and kind words… yes Sumi is very aware of how my condition has deteriorated of late and has discussed it with the doctor’ ‘but’ today and as hard as this is for me to say (Customs and Traditions) are seen to be of more importance than my condition such is the way of life out here!!

[Haylett]

Dear Barry, I hope this is a happy day for your family - giving thanks for a grand-daughter is a lovely tradition. We also celebrate "name days" in my husband's family - ie Saint's Days on the day that you were born but it just means a card or a text - not moving the furniture! That sounds a bit rich to me especially without having asked first if it would be OK! I'm sure your SIL didn't mean to be so high-handed. Rather, he was carried away by the thoughts of his daughter. Still, celebrations for his little daughter, shouldn't mean steamrollering you or the household!

Perhaps when the celebrations are over, you might call a "family conference" just to explain how tiring it is for you when there are these big family occasions. And ask them to buy you a big inflatable armchair, so you can direct operations from a place of comfort!

[bucko]

Hi Barry, I totally agree with Haylett. A family conference after today's celebrations seems to be the most logical thing to do. I am sure your SIL was, as Haylett says, wrapped up in the moment of things and we all do things so often without thinking, don't we.

I am sure you feel what my John feels when our home is crowded with my family. Coming from such a big family and being so close is for me so wonderful, but now that John is suffering like you, it is so difficult. I still want John to be stimulated by family and be reminded of his memories, but the noise must be horrendous for him. When I think that the noise is becoming rather too much for him (and I can usually tell by his behaviour) I move him to the bedroom, but then I sit with him and put the tv on, but then the great neices and nephews want to come and sit on the bed and share this moment with their beloved Uncle John - you can't win and I hate it when I have to tell them that Uncle John just wants a little quiet time. The older ones understand, but the little ones find this difficult and then I rely on their Mum or Grandarent to step in. Usually they do, so I am lucky. It really is a difficult balancing act Barry and my heart goes out to you.

Thinking about you.

June x