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  • #250210
    Carol
    Member

    Last week my mother was given a diagnosis of Alzheimer’s by a neurologist. Mum is nearly 86yo and over the past couple of years there has been some noticeable cognitive decline. Nevertheless, the diagnosis has hit us like a bombshell.

    (The neurologist conveyed this in the most insensitive way possible.)

    My reason for posting is to ask fellow ALSers who have had any experience of this what they have found to be the most helpful ways of dealing with it.

    Has anyone explored any natural therapy possibilities – eg curcumin?

    Mum and my stepfather are denying the diagnosis – but nevertheless Mum is taking the prescribed drug reminyl (galantamine). I think they are oscillating between disbelief and despair at the moment.

    Mum has spent the last four days with me, and we had a lovely time together despite the backdrop of this awful diagnosis.

    So, I guess I’m on a mission – to find some hope. Can this disease be arrested?

    Carol

    #440117
    Robyne
    Member

    :hug::hug::hug::hug:

    find a really good naturepath might help you

    #440118
    Kirsty
    Member

    :hug::hug::hug: This is a hard time for you. I will share my story of Alzheimers, it is very different from yours and not a positive experience but by sharing it I hope I can express how important I think it is to communicate with your mum how much she means to you and by spending this time with her will mean alot to her as well as help you deal with the process that may unfold:kiss::hug:

    My Dad was diagnoised with early onset alzheimers when he was 58. He is now 63. I had know for a long time before that ‘something’ wasn’t right. We would be talking and he would repeat a topic we had cover only minutes before. I feel bad now but before we knew what was happening this would be really confronting. We had a chance to say our good byes before he got to the place he is now where he has no recollection of us at all and I am thankful for that oportunity. I haven’t seen him now for about 2 years now and yes this makes me feel bad but he isn’t there anymore, it is just a body that I recognise as my father but inside is not dad anymore:( My Step-Mum cares for him but is finding this harder and harder

    It is a hard journey but by supporting our family members in the way that works for us and them is also important.

    Gee I may have not been the best person to reply because in our case the medication has slowed the process but not arrested it.

    I would reccomend that you let your mum know all the things you have always wanted to tell her now:hug::hug::hug: and take some time to care for yourself aswell:clap::clap:

    #440119
    Chezza
    Participant

    Gee Kirsty, 58 is so young!! It must be very hard to go through and I don’t blame you for not seeing him…. Dad died for stomach cancer at 53 and went mad before he went… Some things you just don’t need to see, imo…..

    Carol, I have no experience with this terrible disease but just wanted to give you :hug:z and :kiss:z….

    #440120

    Yep. Having coped with a mother who was not the same person after I was 10 years old, and who became more and more that ‘other’ as time progressed, I can really understand how you need to keep your memories precious. Do spend time with your mum while she is still capable of knowing you are there, but forgive yourself too if it all becomes too hard to bear. There are times when we need to protect ourselves, rather than making ourselves sacrificial lambs in the interests of society’s expectations.

    #440121
    Depome
    Member

    I don’t have first-hand experience either, though my Grandad’s second wife died last year after suffering AD for a few years. The diagnosis came just a year or so before I left Britain but she didn’t live in a nursing home until I had gone. I have only heard stories at a distance for these past 7-8 years, though some of them straight from my Grandad. It was truly awful for him. He used to cycle to visit her twice per week in the end, but only to feed her. He said that is all that he could do for her now – it was devastating for him 🙁

    Anyway, the reason I have replied is because, while I never heard it myself, I did hear the beginning of Life Matters on Radio National this morning which was set to be about the loving relationship and AD. I got the impression that they meant the effect on the marital relationship. I remember being told by my step-Mum (who often went with my Grandad initially) that aggression can become a terrible part of this disease, with the primary carer (often the spouse) being the most frequent victim. I reiterate that I didn’t hear it myself, but I am sure it would be worth looking up their recordings on their website where you can hear their programs for some time after broadcast.

    #440122
    fluffy chook
    Member

    :hug:Carol

    My 86 yr old aunt has been diagnosed with dementia. She has been put onto some medication which seems to have helped. It is so very sad though…Uncle is 89 years old – an ex-serviceman with all his faculties intact. He said to me “I HATE old age”. It near broke my heart:(..he had tears in his eyes, because I knew he was referring to having to watch the decline in his partner of 65 years. The only positive side to getting a diagnosis, is that he can get help with caring for her.

    Good advice from HBG:hug::kiss:

    #440123
    heatherc
    Member

    Carol,

    good on you for looking for ways to support and help your mother. Earlier this year I lost my father to dementia and 20 years ago my maternal grandmother suffered from the same.

    I’d recommend contacting Alzheimers Australia as they can give you a lot of information. Unfortunately I don’t know of any drugs that are going to help a whole lot. As far as therapies go, stimulating the senses is important – touch, sight, smell taste – everything. Again, check with Alzheimers Australia or other dementia support groups.

    This may sound harsh, but I would also suggest that you spend time with your mother now and learn as much as you can about her family history. As the disease progresses she will very probably (and unfortunately) tend to regress, focusing on events or periods in her past. It will help you to keep communicating with her longer if you can respond appropriately. For example, towards the end I used to read to Granny from some of the childhood books that we’d both enjoyed. It was a way of reaching her when she was beyond day to day conversation.

    Coming to grips with something like this is very hard, but there is a great deal of information out there to help you understand what your mother is going through and is going to go through. :hug:

    heather

    #440124
    Gianna
    Member

    Everyone is different Carol and I would take your mum to a naturopath as well. Don’t despair. It could take some time for your mum to decline. :hug:

    #440125

    :hug: I havve no advice im sorry but i have a :hug: for you:hug:

    #440126
    Carol
    Member

    Thanks, lovely people, for your words of advice, comfort and wisdom. Those funny little :hug: :hug: :hug: did a lot for me. :hug:

    It’s wonderful to be able to write on this forum and get the benefit of other people’s experience and knowledge. Your responses have really touched me.

    If you don’t mind, I’ll update on this thread as we go along this rocky road.

    #440127
    baringapark
    Member

    :hug: :hug: :hug:

    #440128
    darls
    Member

    Lots of :hug: for you… The journey with Alz is never easy for anyone.

    My grandma (94yo) is suffering from suspected dementia (I am suspecting this myself as my uncle and aunt doesn’t really bother to get her assessed :tdown: ) and about 7 or 8 years ago, I interviewed her for over the year asking about her background. We used her old photo albums to go through and identifying people, referring to the family tree to see if she knows more than she’s letting on. During this, she was able to remember much more than she claimed, and I’ve learnt so much from her than I’d have thought.

    So I’d second others’ suggestions on spending more time with your mum and make many more trips with her as possible – kids will enjoy and remember her then?

    My father-in-law may be suffering from dementia (he acknowledged this a few weeks ago so hopefully he will be able to get appropriate supports for himself and MIL) and I think he is getting more impatient and sharp with others. Changes in behaviours are never easy to deal with I guess.

    I’ve known others who have had their parents declined with Alz., and and felt so much for them as it also terrifying for them to watch.

    My hat off to HBG for having to dealt with it so young and others too for going thru it.

    No particular advice or suggestions, just lots of :hug: (sorry mine sounds bit like waffling, eh? 😐 )

    Cheers! :hug:

    #440129
    julientuareg
    Member

    I have not had the experience within my own family but I have provided care for quite a number of people with Alzheimers and various levels of dementia. I would reiterate what others have said, contact the Alzheimers Association, get your mothers name down on the waiting lists for carers. You may not need it yet but eventually you will want access to respite and day centres which have programmes for people with memory loss. It would be very rare for some one in their late 80’s or 90’s to not have some memory loss but often this is insignificant and doesn’t impact on their safety or health to any great extent. In the people I have seen over the years the deterioration varies greatly and the behaviours exhibited vary as well. Some do get aggressive, some get very sexual, some become more childlike. It is hard to predict how an individual will progress but treasure the memories you have and try and create more while you are able.

    #440130
    Kasalia
    Member

    I watched a show on this awful disease and why it effects people differently and :hug::hug: to you.

    My friends father suffered and she made him a photo alubm with all the family in it and their names underneath clearly and relationship and some memories for him to look at when he was in doubt. Maybe you and your mother can put one together for Christmas or something in a “we need to update our photos” idea but you thinking of the future.

    Keep it simple tho of close family.:wave:

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