Health & Fitness

dementia

Health & Fitness

Posted by: nusanan

6th Jun 2011 06:07am

I just want to chat to people who are caring for a dementia sufferer my husband has dementia and i live in one state and all my family live in another so I have no help he will not hear of getting help from strangers.I thought i might get help by talking to people in the same situation.

Comments 13

Anonymous
  • 6th Nov 2011 08:47pm

well i lived with my nan when she had dementia and she kept a journal i think it may have helped her but i don't exactly know sorry if this is not helpful

Anne
  • 3rd Nov 2011 10:22am

Hi Nusanan,
Alzheimer's disease is a very sad illness as it not only robs the memories of the sufferer, but also of the caregivers - you get to a stage where you can't remember the good times as the hard times are just so hard.
My mother suffered from early onset Alzheimer's and so by the time I was 12 years old I was doing all the cooking and cleaning for our family - although it wasn't until many years later that we found out what the problem was. When I married and moved to a city a full day's drive away, my dad phoned me up to ask why mum's cooking had suddenly deteriorated so much since I'd been married! He hadn't realized that she wasn't doing any meals as she always hung around the kitchen looking busy. It's really important for you that you find support - even if your husband won't accept help - you need it. There is likely to be an Alzheimer's society in your area - they are a great source of help - even if it is just to get you out of the house for a short time to have a break. If your husband is at the stage where he needs constant supervision then maybe you could arrange for a friend to 'visit' him unexpectedly while you go to a support group meeting. I know there's a lot of work to do in organizing all these sort of things, but it is necessary for your sanity to have some time out. My dad looked after my mum for many years - right up to the stage where she couldn't toilet herself and it was only then that he acknowledged he was unable to do any more. Although she suffered from early onset Alzheimer's she lived until she was in her late 70s so it was a very long road for our famly. My dad literally wore himself out and it took him a long time to recover from the state of exhaustion he was in. All my children's lives we took our holidays with my parents in their home. We would drive up to their place, and I would immediately start looking after my mum, and taking the responsibility from my dad to give him a rest. My children never had any other holiday until my dad died, just a couple of years after my mum, but by that stage, they were in their late teens. They knew that we had to help Grandad and they were pleased to do all they could do for him.
I wish you all the best, because your path is not easy, but there is support for you if you look for it.

musicmum
  • 6th Aug 2011 04:41pm

I watched my mother suffer when she was caring for my father, her biggest mistake was not reaching out early and seeking help, until it got to the point after he was putting himself and others in danger that we had to put him in professional care. This was extremely heart breaking to everyone. So please don't wait until things are too much if they are not already, seek help through family(ask them they may come to visit and help occasionaly),friends(just to give you a few hours off) and community health(for other resources and help). You need days of rest and relaxing to recharge as this is a very hard journey for you or anyone to undertake, and I applaude you for your bravery and dedication.

egg & co
  • 20th Jun 2011 08:26pm

Hi nusanan,
after reading through the replies, I just had a thought that may be of help to you.
In New South Wales ( I don't know what the situation is in other states of Australia )
when a doctor diagnoses that a patient has dementia, they are referred to the Aged Care Assessment Team ( ACAT ) where advise can be given on what care options are available to you.
The following websites may also be helpfull.
The best I have found so far is
http://www.alzheimers.org.au/understanding-dementia-and-memory-loss.aspx
This may also be usefull.
http://www.dementiacareaustralia.com/
Regards
Eggs

Wynwood
  • 16th Jun 2011 12:32am

My father died of Altzheimers some 11 years ago and I helped my mum care for him in the last few years. At first it was distressing but as time went on we learned to accept that the person there now was not my father that we had lost him much earlier. We had to keep a sense of humour to keep our sanity and spent a lot of time looking back on his earlier life and remembered him as he was then. Unless someone has been in the situation of caring for someone close with dementia they do not really understand but by accepting the situation and having help from those around you who care will make the burden lighter. My dad would not accept help but we found as he deteriorated we had to use a lot of psychology and put ideas in his mind for example when he was no longer safe to drive his car we told him mum needed to get some practice driving or she would lose her license. He gradually accepted this and by letting her "practice" every time they went out he eventually just automatically went to the passenger seat without question. It is hard but patience is the only way.

nusanan
  • 19th Jun 2011 06:18am
My father died of Altzheimers some 11 years ago and I helped my mum care for him in the last few years. At first it was distressing but as time went on we learned to accept that the person there...

I truly wish I had someone around to help but people such as yourself can help by just being there Regards Jan

egg & co
  • 15th Jun 2011 11:45pm

My mother, who died some months ago, had dementia caused by several heart attacks and strokes / mini-strokes.
My mother was of the generation that only went to see a doctor when she was forced to by her inability to do what she wanted to. Pity, as she might still be alive today enjoying seeing her grand-children and great grand-children.
My mother went through several stages with her dementia journey, from being a vibrant, reliable, organised person to someone who slowly lost a little bit of herself each day and would become very upset when her routine needed to be changed, to someone who knew me as her son to someone who knew she knew me but not whether I was her son or husband or her father to only knowing that she knew me but not who I was or her relationship to me. I always tried to get her to laugh at some of the funny incidents in her life and she remained reasonably happy to the end.
When my father died some 6 years ago, my sister ( who lived 6 hours drive away in one direction from my mother ) and myself ( who lived 1 hours drive away in the opposite direction ) realised that as we were both working, we could not keep mum at her home where she had spent most of her married life nor have her with either of us as her dementia had already progressed beyond where we would be capable of giving the care required for mum, after a lot of searching we found a retirement village that was not far from me with a range of care available ( from self-care to low care to high care to dementia care ) and to pay for the accommodation bond we sold the family home my mum had lived in for many years. I was fortunate to be able to visit mum frequently and take her out for the day whilst she was still mobile but eventually she lost the ability to get about and then spent all her time either in bed or in a moveable day bed. There were some very funny moments that we all still laugh about when mum was undertaking her dementia journey. Do not be afraid to accept help from anyone that offers it.

Chris
  • 19th Jun 2011 06:56pm
My mother, who died some months ago, had dementia caused by several heart attacks and strokes / mini-strokes.
My mother was of the generation that only went to see a doctor when she was forced...

Hi egg & co, I would like to thank you for all your information. Just knowing that someone has been through what nusanan and myself are going through is a great comfort. You can tell people how you are feeling and what is happening but until you have been through it yourself you cannot really understand. I don't think anyway. Mum is at the stage where everything that I do is not right. It hurts but you can't let them know. We have had quite a few laughs as well. I guess remembering the good times is the only way to keep yourself strong. Thank you once again. Regards Christine

nusanan
  • 19th Jun 2011 06:16am
My mother, who died some months ago, had dementia caused by several heart attacks and strokes / mini-strokes.
My mother was of the generation that only went to see a doctor when she was forced...

Yes indeed there are some very funny moments but naturally I have to hide my laughter Regards Jan

Ingi
  • 15th Jun 2011 10:33pm

My mother who died 6 years ago at the age of 94 was a Russian woman who worked all her life, had two children, moved to Australia in 1949. She worked cleaning TAFE in Victoria etc. Her husband died at age 65, she was on her own for 26 years I noticed on several occasions that she had tens and tens of bottles of medicine on top of the fridge, the fridge on a very hot day was left open (elec. too dear she said) milk going off in the open fridge etc. Noticed she never washed her clothing etc. finally she was found on the laundry floor, I lived in a different town from hers but visited and took her to Bingo several times a week, she kept on saying no I didn't pick her up etc. to cut a long story short, she ended up in a hostel, aged care place, no nurses, expensive, etc. she was there for 8 years and then to another nursing home with nurses etc. and more care. We were having coffee and finished and said to me aren't you having any? I found out it is best to agree with them, don't confuse them anymore, keep them happy, don't argue it confuses the hell out of them, Mum had alzheimers and dementia for 26 years, didn't recognize me when I visited, picked her up, she said do you work here? I agreed yes I do and it kept her happy, she was in a world of her own and sadly for me I was sad that she didn't recognise me, was nasty to me on many occasions but that is life, a person's brain cells diminish or so they so, she was such a good, hardworking mother and I miss her very much. I had no support from my husband or family either, they didn't care. It was very hard but do remember your husband was a good hardworking man in the past and you have to agree with him, look after him, it's hard I know, but you have to live with him and love him, no matter what happens.

nusanan
  • 19th Jun 2011 06:15am
My mother who died 6 years ago at the age of 94 was a Russian woman who worked all her life, had two children, moved to Australia in 1949. She worked cleaning TAFE in Victoria etc. Her husband died...

Thank you Ingi I will manage some how as we do regards Jan

Chris
  • 15th Jun 2011 08:48pm

Hello Nusanan, I care for my mother who is going through the stages of Alziemers. I can sympathise with you completely. I don't live with mum but go and see her every day. Some days are good and some are not so good. I am lucky though as my mum has a lady come in each week day to help with showers and other things around the house. Mum didn't like the idea at first but she loves them coming now. It's a shame that your husband won't accept help. It helps you as well as your husband. I tried to shower mum but we were both uncomfortable doing it as I was her daughter. I guess we have to take one day at a time. There will come a time when I will have to decide that mum needs more care than I can give her. Which will not be an easy thing to do. I hope we can keep in touch so that we can help each other through this hard time. Take care Christine

nusanan
  • 19th Jun 2011 06:13am
Hello Nusanan, I care for my mother who is going through the stages of Alziemers. I can sympathise with you completely. I don't live with mum but go and see her every day. Some days are good...

Thanks for you input Christine my hubby can still care for himself at this stage its teh frustration for me having to think for both of us and he thinks alls well.The short temper is also a problem I worry so much that I wont be able to handle things as they get worse he is 75 and I am 70 with health problems as well,I guess as we women the world over do I will manage Regards Jan

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