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Confusion, getting older or something more serious

Discussion in 'Memory concerns and seeking a diagnosis' started by Birdfrom, Aug 6, 2019.

  1. Birdfrom

    Birdfrom New member

    Aug 6, 2019
    mum is 77, she is in brilliant physical health and walks several miles each day. Recently she has been on holiday and the travel company called me as she had got up during the night twice and also during the first couple of days, really confused how she had got there, what she was doing there etc. She is away again with my Aunty, at her house, and my Aunty says for the first two days she got up during the night, didn't know where she was etc, the nights have settled now, buy my Aunty has noticed how restless she is, keeps looking out of the window and going for walks ( she has got lost once). When at home she seems to be managing the house and her are clean and tidy, she does seem to find it hard to follow instructions for anything new, like the tv remote and she has she writes a lot of things down on the calendar and keeps referring to it during the day, she also writes down the night before what the next day is and if she has anything planned. She was diagnosed a couple of months ago with some blood vessel changes at the base of skull and put on the only medication she takes, a blood thinner clopidogerel. The doctor said if you scanned everyone her age you find these blood vessel changes in about 70%. We went to the doctor after the last holiday and he asked her a lot of questions and said to come back in October as he didn't think she needed to see the memory team yet. I have gone into complete catostrophy mode and I'm so worried and anxious about what it means that I can't eat or sleep, sorry to babble on, any support would be greatly received, thank you
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
  3. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    I'd suggest that you start to keep records of all the 'odd' behaviours you and others notice. Write it all down then send it to your mum's GP before you see him again in October. That way he will have good information before the appointment and will also mean you don't have to say anything embarrassing in front of your mother that might upset/annoy her.

    You know something is wrong. If you read around the forum you will come across many others with similar issues. It may not be dementia (other health problems can cause similar symptoms) but I notice the GP said he wasn't going to refer her to the memory clinic yet... That sounds very much like he already has suspicions and is taking the 'time will tell' route at this point.

    For what it's worth, your description is exactly how my mum started. :(
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    It does sound worrying @Birdfrom.

    At least your mother is currently being treated and tested by her doctor. You could always have a word. You will be listened to even if the doctor is unable to discuss.
  5. Birdfrom

    Birdfrom New member

    Aug 6, 2019
    Thank you everyone for your replies, I think I know I'm going to have to find some strength to deal with this, it is selfish of me to hope things will go away ☹️
  6. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    South Northwest
    Don't beat yourself up over any aspect of this. We all feel that way when faced with what looks like the most unwelcome human journey of all. The day I realised my mother no longer had any grip on time or date I cried all the way to the railway station; I felt I was abandoning a vulnerable person, not saying goodbye to my mother until the next time I had some holiday from work. And I wasn't just crying for my mother, I was crying because I knew my life was never going to be the same again either.

    But draw your strength from knowing that there is nobody else better suited in the entire universe to helping your mother through what lies ahead. Our parents looked after us (well, most of us anyway, not all are so lucky) and eventually we get to help make sure they're safe. It can be a miserable process, but it can also be incredibly rewarding, whether we do much caring ourselves, or 'simply' make sure the right professionals are involved.

    I hope your concerns prove unfounded, but the symptoms are familiar. As Jaded said, note down all your concerns over a period and write to your Mum's doctor. They will, sadly, be all too used to getting this kind of feedback from families, and although it can feel disloyal and undermining to go behind you mother's back (that's certainly how I felt... and so did she when she found out!) doing the right thing is rarely easy in life.

    The very best of luck on the road ahead for your family. Oh, and one final bit of advice... don't turn to chocolate Hobnobs to try and help you through the stress. I've researched this extensively and it doesn't help at all.

    Jaffa Cakes, on the other hand... no, not Jaffa Cakes either. Especially if you nibble one side off and dunk them in neat vodka. Terrible idea.

    Hanging around here is a much better idea. It can be a bit depressing sometimes, seeing the kind of issues which crop up and the struggle to deal with them. But bravery is easier when we donate it to each other a tiny bit at a time.
  7. Birdfrom

    Birdfrom New member

    Aug 6, 2019
    Thank you, really thank you
  8. Jennybelly

    Jennybelly New member

    Aug 15, 2019
    Hello he
    hello there. I'm so sorry about the problems your mum is having. My mum is also 77 and is relatively fit as well but her personality has changed over the last couple of years and this last year her memory has become extremely bad. She has become angry and defensive whenever Ive mentioned that I think she may have a problem and blatantly refused to see her GP. I've just eventually got her to see her doctor yesterday. I was so shocked that she could not say what date it was or even tell the doctor what she watches on TV. She has referred her to the memory clinic. She doesn't seem to realise what this means. She continually just says she's okay. I'm totally distraught about her. I'm an only child and have no other living family members. My mum lives with me and we have always been close and have travelled the world together. She is my best friend. I feel so lonely now as I can't hold a proper conversation with her. I take her for days out now as she couldn't possible manage being away for even a week. It's so horrible and I so feel for you too. It feels like a bereavement. I know just how you feel. I can't stop crying at night. I've starting telling friends about her but I feel sick about the future and what it holds. I'm so sorry if Ive made you feel even worse. This isn't my attention.
  9. Lawson58

    Lawson58 Registered User

    I do think following this up will be helpful, perhaps it is something like dementia but maybe it isn't. I find it interesting that she understands how to organise herself and prepare for what is coming on the following day and that she is staying on top of looking after herself. That is quite impressive.

    Technology? That can defeat many older people who find it hard to keep with all the new stuff that appears regularly to convince the younger generation that they should spend more money on the latest gimmicky thing.

    Don't panic yet. Even if it turned out to be a form of dementia, she sounds as if she is coping well and that is what you will do too.
  10. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to DTP @Jennybelly
    Please keep posting as you’ll get lots of support here.
  11. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi @Jennybelly and welcome to the forum. I'm sorry to read about your situation but I'm glad you've found Dementia Talking Point. Once you've had a good look round you might want to start your own thread. I know you'll get lots if help and support here.
  12. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello @Jennybelly
    Things like that can come as a shock and its easy to either go into denial or catastrophising mode.
    Take it one stage at a time.
    I agree with previous posters to keep a diary of the odd things that she does and then send in a letter to the GP before her appointment. It may not be dementia, but I read your post and it all seemed very familiar.

    I think I need to investigate this.
    Purely for scientific research you understand ..............
  13. Natpat

    Natpat New member

    Sep 17, 2019
    The description sounds just like what I have noticed in my mum over the past two years. Her own sister has Alzheimer's and she has had a great deal of trouble accepting that situation. Mum also makes lists of everything, making notes on the calendar, writing information in a notebook, so she is aware that her memory is declining but she says her doctor tole her it is a normal part of aging. But I feel it is more than that. She repeats stuff she said 5 minutes previously, she gets confused with days of the week, she forgets bits of conversation we had the previous day. She forgets her handbag then makes up a story about it. Her personality has changed, she used to be very stoic and self-assured. Now she is very tentative about many things, and quite emotional. I am glad I found this forum. The grief I am feeling is overwhelming.
  14. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello @Natpat and welcome to DTP.

    I think the unknown is far worse.
    Take the advice given on this thread to make a diary of the odd things she says/does and write a letter to her GP so that your concerns are on record.

    BTW, sometimes people with dementia dont report things back accurately, so it is possible that what she says the doctor said, may not be totally accurate.
  15. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    If your worst fears are realised, there may be medication that your mum can take that will slow the progression of the disease, but whatever the outcome, you will receive lots of support for the journey ahead from this forum.
    My mum is at the same stage, physical health is amazing, good appetite, mobile and continent (fingers crossed that continues!), but her memory is awful. She can still recall the 1930's, the 1940's are hazy but 1950 onwards is gone from her memory banks, which upsets me greatly as that has wiped out all recollection of dad and their happy marriage and us children.

    She was a lovely mum to us and this is my time to repay her kindness and look after her.

    Mum now lives with us and feels safe and wanted, and the plan is to continue, however, since finding TP and reading other people's stories, TP has made me realise that in the future we may have to consider other forms of care, after all, mum is well looked after, but my husband and I are no spring chickens and OH is not in the best of health himself.

    The most distressing time for me was realising that I could no longer be 'the daughter' and look to mum for help, advice and the love that a mum gives that makes everything better and all right in the world.
    From that point I had to grow up and be the Grown Up, a 100% role reversal. Once I had faced up to and accepted the change in our relationship, I found it easier to get on with our life as it is now.

    'Onwards and upwards' as we say in our family, share your worries here and you will feel lifted with the positive support that will come your way
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello @Natpat
    a warm welcome from me too
    I'm glad DTP is already helping you
    whenever anything is on your mind just start a thread of your own and, as you've discovered, members will pop i to offer sympathy and suggestions
  17. Natpat

    Natpat New member

    Sep 17, 2019
    Thank you for your feedback. You have perfectly worded the distress I feel. I would normally be calling mum up to get advice but no longer can. We witnessed my father's physical decline with Parkinson's until his peaceful death two years ago. Through it all he somehow remained 'dad'. This feels very different. I am loose a significant part of my relationship with my mum who has been my anchor and my confident, while she is still alive. How did you work through it?

  18. Natpat

    Natpat New member

    Sep 17, 2019
    Thank you for the advice. We will write a letter and send to her GP.

  19. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    Hello Natpat,
    My mum has always been an important part of my life, after getting married, my husband and I lived around the corner from my parents,who were very involved when our children were born, we all got along and were a close knit family and remained close even after job moves put a distance of 150 miles between us. Mum and I had (and still have, albeit in a different way) a close connection; I am my mother's daughter!

    Dad passed away a couple of years ago and if I'm honest, there were signs of mums mental decline before dad died, but they were a strong unit ; dad had poor physical health but his mind was as sharp as a tack and he managed the finances, whereas mum was physically fit and capable of running the home but with an increasingly poor memory, but together they coped and I think, because to all intents and purposes they seemed to be managing, I could pretend that mum was still mum and dad was still dad, I didn't look past their frailties.

    After dad had died, it quickly became very obvious how vulnerable mum was. Mum was aware that she wasn't coping very well and was worried that my sister would put her into a care home (my sister threatened mum frequently that if she couldn't keep her standards up, she would be put into a CH, never mind that mum had just lost her husband of over 60 years and was grieving).
    Mum was frightened living by herself and was totally isolated from neighbours and friends and what began as a short stay with us ended with mum not going home and living with us permanently.

    Between my dad passing and how we are today there has been an awful lot of upset caused by my sister and her family, and they put us through the worst of times.
    Out of necessity my husband and I became protectors to shield mum from the brutal events that took place, and it was at that point I grew up and realised (at the grand old age of 60+) I had become, and had to act and think like, an adult.

    On the 'professional' side of things, there are three of us who have attorneyship to act on behalf of mum for finance and health. Mum still has full mental capacity, but doesn't want to think about money, she is content and happy to be with us and live her life with us.

    On the personal side of our relationship, we are still mother and daughter, as you will still be.

    You asked how I worked through it.
    I would say take over the responsibility of organising your mum's finances, paying the bills etc, so that is a worry off her mind. My mum was the youngest child in a large family and she has never known life without lots of brother's and sister's, family and friends, so realistically, she was never going to be able to live on her own at the age of 86, and that was another part of the problem that was solved when she came to us.
    Now that the worries have gone, the essential parts of my mum have re-emerged. She no longer repeats and repeats, her sense of humour and patience has come back and the best thing of all, she gives me advice.

    I can't and won't confide in her the way I once did, she is losing the knowledge of how relationships and the world works and I recognise and have taken on fully the role of being Grown Up, but if OH and I have fallen out, for instance, I may say to mum I am 'off' OH and she will tell me to give it time and things will work themselves out.

    So my advice to you comes from my mum, give it time and things will work themselves out.

    It's frightening for you to think that your mum isn't behaving like your mum, but she really needs you and you can't run away from it, no matter how much you want to pretend it's not happening (like I did).

    With you at her back, supporting and guiding her towards her life as it will be from now on, I know that you will feel a sense of achievement and pride that she can continue to live the rest of her life with dignity, and that, my dear Natpat, will make you a Grown Up too!
    With love

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