New and Scared of the Future

Discussion in 'ARCHIVE FORUM: Support discussions' started by jillywak, Jun 22, 2008.

  1. jillywak

    jillywak Registered User

    Jun 21, 2008
    6
    #1 jillywak, Jun 22, 2008
    Last edited: Jun 22, 2008
    Hi This is my first time on here as despite a year fulll of suspicion , but hope I have just found out that at 57 my mum has alzheimers. She is relativley ok at the moment but I have no idea how quickly she will get ill and what support thier is. ?? Its a scary time for us all. I know nothing about timescales, support, and medication. I also scared stiff as My grandad had alzheimers so poor mum must have got that gene and as a mummy of 2 little girls Im wondering whats in store for me.Suddenly my life has completley changed.. Any advice on how to deal with all this ?:eek:
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jillywak

    welcome to Talking Point.

    You write some important things:
    this is known as young onset dementia [my wife started her dementia at 50]. This is less predictable in my experience on all fronts - speed, effects etc.

    You can only observe what happens - keeping a diary is a good way of recording developments. To be frank, nobody will have any idea of how quickly things will develop.

    Make the most of every moment, on that basis.
    if there has been a formal diagnosis there should be a consultant and others who should be able to help. Also, the Alzheimer's society at your local branch and at the HQ will help you learn. Of course the membership here as well!
    I've been scared for the past 17 years.... you don't get used to it but it is good to be able to manage it, if possible.
    please don't assume this is genetic. It may not be the case and sometimes diagnosis of Alzheimer's is used when in reality it is another form of dementia, or mixed dementia.

    Probably be a good thing to get more information on what you are dealing with. "Alzheimer's" can be a bit of a catch-all name sometimes.
    slowly, carefully, while taking care of yourself and your family.

    Don't panic, and use Talking Point as much as you need to - the members here know exactly what you are saying.

    best wishes
     
  3. jillywak

    jillywak Registered User

    Jun 21, 2008
    6
    Hi Bruce

    Well Bruce that is a great start, thankyou for taking the time to respond to me. I will be taking your advice. I see the consultant in 4 weeks and mum dosent even know yet.... That will be a toughie telling her.
    I Will have had time to take thhings in by then and will be less emotive and more practical. I hope..... Im sorry to hear about your wife. I have much admmiration for people like yourself who help others...I mus admit I have been worried about the fact that mum is young as is pysically fit and could have years and years and years ahead of her, getting sicker...I guess I will just jave to wait and see, I will start taking a diary as of today and make the most of her as she is. Take Care and thanks aga:(in. x
    Going to send this link to my brother too .
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Jillywak, just wanted to welcome you to TP.

    Bruce has answered all your points, and I agree with everything he has said. Particularly, don't assume that it is hereditary. It may not be, and it would be a shame to live your life in fear. Try to get as much information as you can, though often the consultants are reluctant to be specific, because it is so difficult to tell one form of dementia from another in the early stages.

    Post any questions you have, or if you just need some support. There is almost always someone here.

    All the best,
     
  5. ROSEANN

    ROSEANN Registered User

    Oct 1, 2006
    909
    staffordshire
    Hi Jillywak
    Just wanted to say welcome to TP.
    Brucie has given you alot of good advice [I think you will find him a mine of information]
    All I can add is that like another of our gents says take it one day at a time and anytime you want to talk there will always be someone here.
    All the best Roseann
     
  6. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Jillywak,welcome to TP.

    First of all I want you to just take a deep breath and realize that you are stillyou. Alot of people make the mistake of letting alzheimers take over their world. With all the wonderful advice you will get I suggest you just learn to soak and addapt. I know the last year has been long. The initial shock then the idea that maybe not but then after going thru and having the dr's finally say yes is nerve wracking.

    I hope you don't spend too much time worrying about the genetics of it all. It's not worth losing your quality of life over. I do suggest that you take a no holds bar attitude and learn everything you can about AD. I think in the long run you will feel alot better about this new journey. You didn't say how old your kids are, but , I assume they are young. Don't keepthem out of the loop as to mums condition. I think you will find lots of joy in allowing them to be with her also.

    Your in our prayers. Feel free to jump on and vent or ask special questions...there is no question too stupid or no question asked too many times.


    HUGS

    Nancy
     
  7. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hi Jillywak

    My husband has a dementia and like your mum he is physically fit. I refuse to dwell on the future (unless it is beneficial/strategic) and enjoy him as he is NOW. He is able to do so many things and in many ways I try to make life as "normal" as possible. I can do this NOW but I don't know how long the NOW will last but then who does? At first I thought it was because I was in denial but now I don't think that at all - I think it's very positive. We went swimming this morning and were joined by his son and two of his grandchildren - I think this is wonderful and Alan really enjoyed himself.

    I think it would be a good idea for you to have someone to talk things through with. I rang the Alzheimers Society and they sent someone round and this has helped tremendously.

    Love and best wishes to you

    Helen
     
  8. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Welcome Jillywak...

    glad you have found TP. So sorry to hear about your Mum. Bruce and other members have given excellent advice. Try and enjoy the here and now with Mum. I found I coped better finding out as much information as possible (usually from TP, which has a very informed and caring memebrship:))when my Mum was diagnosed, although she is considerably older than your Mum. Take one day at a time, try not to be overwhelmed, and above all take time for yourself and your family. Do come back and use TP it's a wonderful place for information and support, we all speak the same language on here.:rolleyes:. Take care.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Hello Jillywak

    Just want to say the diary is a must.
    It will help you when your mother sees doctors, to have something to refer to, and it will help you to write down your feelings and experiences.
    Talking Point [TP] will be a great source of support and information. No-one will fail to understand.
    Love xx
     
  10. jillywak

    jillywak Registered User

    Jun 21, 2008
    6
    wow I am overwhelmed

    Wow.. Thankyou all individually for your kind and loving responses. I no longer feel alone and truly appreciate the advice you have given me. Over the past few days I have had lots to think about. Mum is still unaware of the diagnosis as she forgot what the doctor said to her, by brother insists on talking to her as I am too emotive but he has 2 children too so finding the right time is tough, Although it is very urgent. Mum is still happily bobbing along thinking she has a small brain ( thats what she could remember) because she is a small lady!!! ( OH NO I can feel a ramble coming on) My kids are 1 & 5 and mum still looks after my youngest 1 day a week while i am at work. Im not sure what she gets up to or if she is safe , she seems to be.. Mum also does voluntary work and is driving.. I just dont want to stop her life, but at times worry she is at risk. Nothing major just silly forgetfulness. Arrgg what so you do for the best. I have another massive dilemma aswell, which I Feel totally guilty and ashamed for even considering, bearing in mind the recent news... My husband AND I have been planning to move permantly to the south of france, we have spent the past 2 years re training so we can go and still work and are ready to sell up nd go.........HALT..... You all mention continuing as normal and taking care of myself & family but gee how do I face this one then.. I cant leave mum, not now....I just have no idea what will happen with mums health in terms of timescales and wellbeing... Ok Ramble over......................
     
  11. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hi Jillywak

    That's not rambling Jillywak, that's telling us how complicated and worrying the news of this disease can be. There are so many things to consider and it's true our lives have all been disrupted from what once was.

    You've a big decision to make with regard to France (although it sounds like you've already made that decision) and that is disruptive enough. A lot of us have talked about being robbed of the futures we had planned and the feelings involved with that. One step at a time. Just the above is enough to be dealing with.

    Take care, Love Helen
     
  12. Jon69

    Jon69 Registered User

    Mar 29, 2008
    6
    Hi,

    I am in pretty much the same place as you. My mum is 65 and my gran died from Alzheimers 15 yrs ago. I too had my head in the sand regarding my mum. On a recent trip to see my sister in Australia she was really confused the whole time she was there. She travelled alone and on her return spent nearly 3hrs wandering round Heathrow whilst my brother frantically looked for her.She had made the same trip a year earlier and been fine. We have just got her to see a doctor for blood tests ( a lot of effort from all required to arrange that) and we have all talked to each other about our concerns (not mum she wont acknowledge it)
    It is incredibly scary and upsetting. It seems like only yesterday that my mum was caring for all of us and was so practical and strong. It is hard not to become irritable and then you hate yourself for snapping. Most of all I miss my Mum as she was. Of course some of the time you forget anything is wrong especially at this stage but still there is something different and you just cant put your finger on it.
    It feels good to have got the ball rolling diagnosis wise. I joined here after I had spoken to my sister in Australia whilst mum was still there. At first I found some of the situations that I read really frightening to read.But the advise and support I received encouraged me to face it and to start thinking about a diagnosis for mum. I was given really good advise about speaking to the Dr before my mum saw him and that is what I did.
    I wouldnt worry about an alzheimers gene. As someone said it is often a term used to describe all sorts of dementia. Lots of what I have read seems to say there is no evidence of this.
    I have the same fear about how long this will go on for and then feel guilty for thinking that somehow.
    I hope things go well for you and your mum.

    Jon
     
  13. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #13 jc141265, Jun 25, 2008
    Last edited: Jun 25, 2008
    Hi Jillywak,
    Welcome to TP about 10yrs ago I was in the same boat as you, except it was my Dad. Dad was diagnosed at around age 54 with early-onset Alzheimers disease. My advice with hindsight (this is going to be long):
    1. Start taking what doctors say with a grain of salt as they definitely don't know everything about dementias. Doctors may call it Alzheimers disease but it could be one of a great multitude of dementia types...general doctors don't usually know much about the different types and some might even tell you it is genetic when they don't really know...(one or two did to me)Its better to do your own research when it comes to this diagnosis, because often we the carers are the ones who end up suggesting possible medicines, or alternative diagnoses (usually still a dementia type however).
    2. Its not always about memory problems. Although it sounds from what you say that your mother has memory problems, be aware that it can be the case that memory is not always affected by this disease. It depends on what part of the brain is affected...it can seem like memory problems, i.e. Dad seemed to forget how to talk...but it's just that he can't get the language part of his brain to work. It doesn't seem like much of a difference, but it can help to be aware of this when managing strange behaviours. I.e. Being afraid to walk through a shadow is not representative of a memory problem but a change in either visual perceptions or emotions.
    3. Enjoy the now. As a few on here have already mentioned, it is important to make the most of today. It is very easy to get caught up in the distress of seeing your parent's decline and focus on all the things they can't do anymore. But with hindsight it would be far better to focus on all the things they can still do and enjoy it. I was majorly distressed by my Dad not being able to tie his tie, but now I look back and think how well he was back then and I didn't even realise it. With this I also advise taking lots and lots of photos, always...because you don't realise how great things are till its too late. That sounds depressing in its own way...sounds like the future is very grim...but after you've dealt with this disease, its more about the fact that there are so many changes that can come with this disease and you learn to love the new person you get each time and its great to have memories of all those times.
    4. Think very hard about what you want from life before giving it up. I know it seems terrible to consider leaving your mum for the south of France right now....but maybe now is a good time to do that. Its a hard decision however...if you leave now you may miss out on enjoying how she is now, but then if you don't go now, you may not get another chance to do something like that for many many years. Some people have a rapid decline with this disease and others have a slow decline...Dad initially had a slow decline and then about 3yrs after diagnosis he went rapidly downhill, but its been about 10-11yrs now, and I lost most of my 20s to it. Other people seem to not carry on with this disease as long. You have to consider your husband, your children and also what your mother would have wanted for you. If you have a brother who is close by and willing to help out, could you move to France for a few years, visit regularly, with an expectation that you might have to move back...?
    5. Medicines. Medicines to investigate are Aricept, Ebixa, Reminyl/Galantamine, Memantine to name a few. Aricept seems to be the most common one for trying to slow the disease down. The medicines may have different names depending on what country you live in, and some are for early stages and others are for later stages. Again don't just rely on a gp to know what medicines are best.
    6. Try not to stress too much about the genetics. Whilst caring you may start to really worry about this as the stress of caring can cause similar symptoms. Statistics are such that most of these dementias are not hereditary. Does your Mum have brothers and sisters, did any of them get this disease? Also I am guessing that you have probably about 20yrs before you really have to start to worry, so there's a lot that might happen with medications and cures before then. If anything, use any such fear to not rule your life but to make it better, use it to make sure that you enjoy your life now, every day of it.
    7. Investigate the legal and other issues now. A power of attourney will be needed so that someone can manage your Mum's affairs (i.e. money and property matters) when she is no longer able to. It can be shared so perhaps both you and your brother can share it, to avoid any family angst.
    Well thats enough for now...if you need any specific support, or not so specific support (i.e. to have a good cry) feel free to private message me anytime.

    Best of luck,
     
  14. sue4

    sue4 Registered User

    Apr 15, 2008
    6
    Hi,I understand how you feel.My Mum has dementia and was diagnosed 3 years ago at the age of 63.There is no history of dementia in previous generations but she is one of 4 children and her 2brothers have been diagnosed with Alzheimers.I have 2 young children,the youngest being only 4.I have worried terribly about the future for me and my children.My mums consultants don't seem worried though because my mum has been diagnosed with Lewy Body and her brothers were older when they developed dementia.I still worry that we will find out later that they all have the same dementia but over time I have managed to control my worries more.Hopefully the research will come up with something before my children get older.On apositive note my Mum has an outreach worker who takes her out every week and has built up afantastic relationship with Mum.Contact your local branch,they are extremely helpful and understanding.Help is out there. Sue
     

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