Alzheimer’s, Dementia, and Children

[Barry]

Apparently I’d had an extremely bad night sleep as Sumi said she had to wake me up four times from bad nightmares with me screaming out and my arms and legs thrashing out, but no sooner had Sumi woken me up and I drifted of to sleep again and back into what seemed like the same nightmare, although I don’t remember much about the nightmares except that they had all been extremely vivid, horrendous and concerning my own death, so not a pleasant experience. Thus when I did finally wake up at six o’clock in the morning I was feeling like a bear with a sore head.

I sat at the computer trying to type but my step-granddaughter, step-nieces, and friends were all making so much noise that I could not concentrate or think about what I was doing. Now don’t get me wrong as I love children especially my step-granddaughter and step-niece and children will at times make noise and cry especially young babies ‘BUT’ now being some eight years into my illness I find that the crying causes me acute agitation and sends my head in a spin of anxiety as I’m continuously on edge that the children will fall and hurt themselves when they are playing and I start to tremble like a jelly ‘inside my body’, my chest starts pounding and my breathing becomes a gasp and quiet oftener I end up clutching my head for some peace and quiet… when the noise and crying becomes to much for me I have to shut myself in the bedroom but then the problem is that all bedrooms in our house or I should say bungalow lead into the lounge / dinning room, so there’s no escape!

Also out here in Indonesia all the family live in one house which some people might say is nice to have the children around you all the time but in our household there is Sumi, myself, my step-daughter, son-in-law, my step-granddaughter and Sumi’s mother who also has senile dementia, and attached to our house is Sumi’s brother, sister-in-law and two young children who live most of the time in our house thus at times the noise from children can be extremely harsh and even more so when the neighbours young children arrive at our house to play… Sumi does her best to keep them all as quiet as possible but children will be children and quiet often tears will flow or jovial shouting and screaming ensues… I try my hardest to be patient and understanding and join in and play with them but as my illness is progressing so is my tolerance dwindling and I hate to say this but now I can’t have the children around me for more than ten–fifteen minutes at a time after which I feel totally fraught and drained out day in and day out!

As much as I love children a piece of advice from me would be to say (Don’t let the grandchildren or any other children over fatigue a person with dementia)

Barry

[creativesarah]

Barry lots of sympathy and empathy I live in a Christian Community house with all the comings and goings of various people (teenagers are much noisier than children in my opinion!)
what you are feeling would probably happen anyway even without dementia its called getting older
noise can be so tiring I find Sunday lunchtimes a struggle as we dont know how many people will come back for lunch
when I cant cope I usually retire to my bedroom for a bit of peace and chilling time
Lots of support you amazing person!
Sarah

[Haydar]

Dear Barry,
I am sorry about your recent nightmares. I think those nightmares are products of difficulties you are facing as an Indonesian life style in your house.

Although many Indonesian families live together in one house because it provides some advantages to them including economical. However for your health reasons being house bond and not being Indonesian born, you definitely need a life in your house with more privacy with minimum family members. And definitely without your wife’s brother’s children who also bring their children friends. Their noises will harm your nervous system consequently will accelerate progressing of your dementia, elevate anxiety and depression disorders.

Please let Sumi to read your tread as well as my reply. I am sure she will try her best to give you much better life style you deserved by talking to her family for necessary actions.

Best regards, Haydar

[bucko]

Barry,

I am sure you are describing just what my John is experiencing - his horrid nightmares when he shouts and screams out and when I go into him his arms are flaying everywhere and with regard to noise and children, he experiences this every Saturday when my family come around.

As John's mobility has become much worse and I cannot get him into my car (I have been waiting for a ramp to enable me to get him out of the house in his wheelchair, and I am also waiting on getting a wheelchair accessible vehicle - next Wednesday is the visit scheduled for the chap who is coming to see me about this). Because of this problem, our visits to my siblings homes has become impossible, so they all visit mine on a Saturday and we take it in turns to make lunch. I am so grateful for this as I get to see all my family, nieces and nephews and their children, but the problem is the noise. Like you, John loves children, but I often see John put his hands to his head. Its then I take him into the bedroom for a sleep, but like you say in a bungalow you can't get away from the noise. My family have recognised this also and I have begged them not to stop coming, but am I being so very unfair to John?

It is wonderful that you can write your thoughts down and provide everyone with an insight into this horrid disease and the problems you as a sufferer goes through, and you can speak for those who can't speak out for themselves and you can describe what they are most probably going through themselves. Thank you so much for this.


June x

[Barry]

Hi my friends and many thanks for the extremely kind replies…

You are right Haydar ‘Besides Culture’ one of the other reasons Indonesian families all live together is economy related which doesn’t help my condition, and yes I am very much house bound and at times the noise can be horrendous both inside and outside the house and yes the noise is affecting my nervous system which then causes me a great deal of anxiety and agitation, one thing for sure “Living within a different Country with all the differences in Customs and Culture is have a dramatic negative affect on my illness!!!

June many thanks for the reply and I’m pleased to hear that more help is on its way for you and John, yes being house bound makes the illness even worse and I know you said that John now has problems communicating his feelings which must make it very difficult for you to know when he’s feeling anxiety from noise, Sarah said she thinks teenagers make more noise than babies!! (I’m not so sure about that!) As at least you can explain to a teenager that excusive noise is detrimental to a person with dementia, but you can’t explain that to a young baby of 1-3 years old and especially when they are teething and keep crying all day from the grumbling teeth, or fall over and hurt themselves… yesterday was particularly bad as both my granddaughter and niece had a fretful with teeth problems and falling over and hitting her head, what made it worse for me yesterday was that the noise was worse at 3-4pm when I’m Sundowning which then upsets my equilibrium.

Again many thanks to you all
Barry