1. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    #1 mistrymachine, Jun 12, 2019
    Last edited: Jun 12, 2019
    My mother (54) who is suffering from dementia has been on rapid decline. I am 30 and have been trying to accept, adjust and manage this situation and this feeling of loss. My life decisions now revolves around her. I feel directionless most of the time. I am only beginning to accept this situation and the fact that she is mentally barely 10% of what my mother used to be once. But right now what is really making me anxious is the unpredictability of this disease and the suffering she will have to go through and how it will shape my future.

    I know that this disease progresses differently and each case is unique but if someone whose loved one is at a later stage (cannot eat, talk or move) could share what kind of changes (especially behaviour wise) happened and how long did each stage last? That would really help me cope with this situation better.

    For my mother
    -started with lack of interest in family and difficulty doing some activities, general decline in awareness among other things which we noticed for 2 years
    -difficulty focussing, reading and writing
    -followed by diagnosis

    one year later
    -we noticed she doesn't take shower properly, aggressively resists any help, started talking to herself
    -anxiety kicked in
    -two falls within one month...fears falling when walking down the stairs
    -does not like taking shower at all
    -would only respond to one language, she knew two.
    -cannot read or write
    -would not eat properly

    now eight months on
    -her comprehension is almost zero, but she can still talk (to herself) about random things which creates socially awkward situation with people who don't understand her disease.
    -anxiety and confusion levels higher than before
    -hates taking shower, does not clean herself after going to the toilet, hygiene is a big issue, mornings are terrible
    -can still call her children by names but cannot tell the relation
    -eats better but also has to be prompted
    -cannot follow any instruction and becomes very irritated
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @mistrymachine.

    You are correct when you state that each person with dementia is unique. This means the correct answer to your question is that no one can tell. However, there is a Website that is popular with many members of the forum because it gives a detailed description of the stages - including a rough timeframe. You may find it interesting and can find it by clicking this link https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

    I hope that helps you.
  3. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    I have the same feelings regarding my dad. He has just been diagnosed and the thing I am finding hardest is the unknown. When my mum has cancer the definitive timescales and the this followed by this treatment, everything was pretty much set in stone. Whereas this is all just a guessing game. Not knowing what will happen when and how will he change, will he be aggressive or not, will he become reclusive or so open to a point of cruelty. That is the scary part. Not knowing how much longer he will be my dad for anymore. I actually cried for the first time today, it might sound pathetic, at 33 I’m terrible with blood, I cut my finger, my dad helped clear it up and put a plaster on for me. It upset me knowing I won’t have this at some point in the future, knowing he is still there but not for how long

    @karaokePete thank you for that link as it really does help to at least know roughly what will happen and when
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Rach1985, I hope that link helps.

    I think that we don't always lose the person who has developed the dementia. Sometimes that person gets buried under their symptoms but they can sometimes be reached/seen so don't lose hope. My wife is a few years in and she has lost many of her abilities but her innermost character is still there. For example, you mention aggression and sometimes this is a means of communication as the normal means of saying something has been lost - aggression can be communicating something like fear or pain, rather than aggression per se.

    I don't know if you have come across the publications list yet but it is well worth a perusal. You can find it with this link
  5. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    Thanks @karaokePete for those very useful link. I guess it helps me and my family to at least mentally prepare for the road ahead.
  6. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    @Rach1985 When I look at my mother now I wish I could go back to her earlier stage. I would have certainly tried doing few things especially alternative rejuvenating therapies that could have helped her and us release the stress that this disease has caused. The whole family tried to do it in India, unfortunately it was too little too late for her to follow. I feel more than her medication it was small things like old familiar songs, ice cream, long drive, random jokes, that has helped her and us. I guess you are at a stage where you can still make those memories with your father.

    I cried infront of the doctor when my mother couldn't recall that I was her daughter and said that I was her sister. I still struggle to see her decline like this but I have been trying to accept a simple fact that life was never meant to be permenant.

  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    My mother had a long and tumultuous disease course - over 15 years. She was aggressive and agitated and afraid. We spent the first few years trying to find the medication balance which calmed her but didn't over-medicate her. This meant we spent a lot of time tweaking things and changing meds, so that we could try and keep up with her disease. I posted extensively on this.

    The last few years were quiet. Mum was in a wheelchair, doubly incontinent and no longer spoke or fed herself. In many ways, this was easier for me, as I didn't have to deal with all the consequences of violence, of Mum verbally and trying to physically abuse me, of the emotional horror of my very proper and dignified mother doing and saying such horrible things.

    It is very hard for us, because there are no parameters with this vicious disease. We never know what we can expect. I do think that we can only take things as they come. Because one person with dementia behaves a certain way does not mean that your loved one will do the same.

    I'm sorry, I've gone off on a tangent. I feel that we should try to create good memories for ourselves and do the best we can, and try to kick that guilt monster off our shoulder. That is all that we can do.
  8. KeddyL

    KeddyL Registered User

    Jun 8, 2014
    My heart breaks for you.

    My mum was diagnosed at 47.. she died this year aged 57. I was 17 at diagnosis and 27 when she passed.

    My mums speech was the first thing to go, so it was very hard for us to know where abouts in the disease she was. We could only tell by how she reacted with things and how she looked.

    After her speech went she stayed mobile for a very long time but inbetween she became double incontinant. She suffered with UTIs alot which I think contributed to behaviours. From what I know, I think there was a lot of medication changes. Towards the last year of my mums life her eyes always looked lost, empty. She stop smiling and needed to eat 'finger foods' she lost a vast amount of weight. This christmas just gone, in the run up to her end of life she was in and out of hospital but after numerous tests they where still unsure what was wrong. She got rushed into hospital Jan 2nd this year and wasnt supposed to make the night. She lost her fight on Jan 7th. She looked so peaceful.

    Each person will take their own journey, the same for the loved ones around them. My brother said when she died he felt a weight of his shoulder, I felt like part of me died.

    Thinking of you xx

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