What are the stages of Alzheimer's

Discussion in 'ARCHIVE FORUM: Support discussions' started by keen2108, May 24, 2006.

  1. keen2108

    keen2108 Registered User

    May 24, 2006
    17
    My dad was taken into a nursing home just over a year ago. In the last two months he has gone from walking around and holding a basic conversation and just about remembering names to now being in a wheelchair. He is now frail and sometimes recognises me but cannot hold a conversation about a subject anymore. He will mutter random sentences which make no sense.

    What can I expect to see. I can't believe how he has deteriorated in two months. I never see the same nursing staff twice and they may nod but I get no other communication from anyone regarding his condition. I don't know whether this is a sign he is going downhill. I presume he will end up bedridden. Is that what happens?:confused:

    I just want to know what to expect. Does anyone have any experiences of what will happen??
     
  2. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi there keen2108,

    my mum hasnt been in a home yet but she has been in the EMI unit of the local hospital twice, in her stay's there she's gone from being able to walk to having to use a wheelchair, then back to walking again without aid, she's also been very dillusional, and we often found her wandering around trying to open door's ect,
    at one stage we thought she was at the very end of this disease and that it would be a matter of days before she died,
    she's now back home again, and as things go not too bad, but the reasons for my mums decline at times was becouse of medication, once the doctors altered or changed her meds the difference was quite remarkable, so i was wondering if your dad is on any meds, and whether or not its worth getting them looked at. also have you read the information on the alz website there's some very good info there to do with stages of alz.
    of course it could be it is the disesase that is causing these sypmtoms in your dad, but it just might be worth getting his medication looked at as well.

    hope you get some answers,
    take care
     
  3. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    What are the stages of Alzheimer's?

    Hi Keen, My Mum is in a nursing home too and rapidly went downhill following a fall and hip replacement. She is 81 and has had rheumatoid arthritis for over 25 years. Vascular dementia is when there are a series of mini strokes in the brain and the changes in behaviour can be quite dramatic, leading to a decline in the form of steps. My Mum will improve a little and then get worse next time. I think Alzheimer's is when the brain slowly stops working over a long period and gradually the cells lose their function.
    Nursing Homes have to provide 24 hour care and the staff work on a rota of shifts. You can see the same nurses for several days and then there are a different lot. Just ask the nurse in charge for information because they have to keep detailed records. I've found them very helpful if approached at the right time.
    If you are not satisfied with the care regime provided, you could always telephone the matron or write to the owner. The homes can be inspected at any time without warning so high standards should be maintained-in theory at least.
    It is heartbreaking to see a loved one in a wheelchair, but when my Mum was walking around she was very unsteady on her feet. At least she can't fall down again.
    Best wishes Kayla
     
  4. tinker

    tinker Registered User

    May 4, 2006
    8
    Hi Keen,

    it is a shock isn't it? I know exactly how you feel, My father was in a secure unit for just over a year and in that time I saw him descend into a shambling wreck of his former self. I never managed to get any answers from his nurses or doctors about what to expect, we were never even told what from of the illness he had, it was very much 'does that matter?' was the staff attitude.

    What I can tell you from my observations is that although there were approx 25 people in the unit with my Father, all of them were at various stages of their illness and yet although similar in some ways, completely different in others.

    My father was in the unit as he became very unpredicatable and could not be 'released' we had no option ... He started off quite lucid, able to communicate, very aggressive and generally mobile - he started to get the others in his ward (four wards one unit) together with plans of escape! (V. Funny at the time) They all used to hold hands and walk around searching for ways out! He went from this to picking up a chair and trying to smash his way through a window!

    He used to strike out at anyone for no aparant reason and was extremely agitated, though completely mobile. The constant change in medicatin eventually resulted in his inability to walk or stand up. he wasn't allowed a wheelchair or walker as it was deemed too dangerous (don't ask!!) So he was left to sit all day in one spot. Once this started he declined quite quickly, his speech went, his powers of recognition went as well. He wasn't able to do anything for himself.

    It went on from there, but enough.....

    All I can say is that from my experiences and observations there doesn't appear to be any 'format' that sufferers follow, each one reacts differently.

    This may not be any real help - no answers, but my advice would be:

    Keep your Father motivated, talk to him, hold his hands, ask him questions, even if you cant understand the answers, give him something to respond to. If he's allowed a wheelchair, see if you can take him outside.. try playing him music, get a colouring book, see if he can colour it in. just keep him occupied...

    None of this changes the eventual outcome, but it does in my opinion slow down the progress to the vegatative state..

    Sorry it's not better news.... and I do hope that some of my suggestions will help?

    Take care
     
  5. keen2108

    keen2108 Registered User

    May 24, 2006
    17
    More info

    My problem is that I never grew up with my dad so never had a proper relationship with him and I am now the only next of kin. I was contacted by his Health Authority when he began going to a Day Unit and then he fell and was admitted to an EMI Unit until a suitable placement was found in a nursing home.

    I don't live in the same county and I have a 1 year old baby who had just been born when all this started. I try and visit when I can but it's hard getting the remaining grandparents to babysit as they still work. My mum and dad have a large age difference and split when I was young. My mum does what she can but only gets so many days off work to help out with my visits.

    I feel the staff don't like me at the home because I'm not there maybe as much as the other relatives of people but I am doing what I can. I have to do all his paperwork and pay the bills for him and this took ages through the Court of Protection. I am only in my late thirties so have a dad that is nearly 80 and ill and this is difficult enough especially when there isn't the relationship.

    The only thing I have been told is that he was spitting his pills out in the EMI unit and holds them under his tongue. He spoke then of wanting to die and seemed to know exactly what he was doing. I wonder if he is still not swallowing his medication. Thanks for your replies.
     
  6. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Keen,
    and that is all anyone can expect of you.
    Don't worry what NH staff think; quite likely they don't think a lot, but if you are going to continue visiting your dad, you need to try and establish some sort of rapport.
    What about before your next visit asking for a meeting with the manager, questions you could ask
    1) what medication is dad on, and is he taking it? If in tablet form, and not being swallowed, could it be liquid?
    2) Does dad feed himself? Is he stll eating normal foods or is he on a soft diet?
    Is he having any trouble swallowing?
    3) What is his skin condition like? Is there anything that they are concerned about?
    4) Have they noticed a big change in dad, what do they think. (Has dad had urinary tract infection as these can have quite a dramatic effect (is he tested regularly))
    5) Anything else you may want to ask!!
    I know in the NH where mum is the staff are often busy, if you ask for an appointment, then you will know that they have time to talk. If I were you, I would be quite open about my situation, I think most people would have a lot of respect for you that you are trying to be there.

    My mum is in advanced stages: signs I am looking out for
    • difficulty swallowing as shows the reflex is going
    • inability to support her head
    • stiffening of limbs
      inability to sit up
    I think some sufferers do become bedridden, others die from pneumonia or something like.
    Hope this is of some help.
    Best wishes, Amy
     
  7. tinker

    tinker Registered User

    May 4, 2006
    8
    Hey Keen,

    I do sympathise... to be honest the H*ll with the NHS...

    I have experienced the worst form of behaviour from NHS staff, including doctors and a professor.. so they do not deserve your thoughts or concerns....This is as much about you and your coming to terms with what is happening and somehow putting this awful situation into some form of perspective where you can be involved, but NOT at the sacrifice of your family.

    It is very easy to become guilt ridden for so many reasons and then when there doesn't seem to be anymore another one will raise up and bite you...

    Ignore the NHS and the staff comments, believe me they have no idea! You have a life to lead and I know this will sound harsh, but putting your family second to your father will not make anything better for him or for you..it will just add pressure and damage existing relationships.

    This illness will suck you dry if you let it...You cannot win, BUT you can survive..so take a tip (if I may?) move forward with your life, fit your Father in around your life...not the other way around....brutal perhaps, but fair?

    take care
     
  8. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Tinker,
    I am sorry that you seem to have had such a poor experience with your father, but I think we must be careful about sweeping generalisations:
    there are many committed and caring people who work in the NHS and Nursing Homes.

    . No you cannot stop the dementia, but I feel that I "win" everyday that I continue loving my mum even though dementia has robbed her of so much; each time we celebrate a Birthday or an Anniversary together (even though she does not understand); each time I make sure that she is still dressed nicely and her face is cleaned after a meal.
    Amy
     
  9. keen2108

    keen2108 Registered User

    May 24, 2006
    17
    Thank You

    Thank you again for all your suggestions. The questions that were suggested are very good and I think making a point of arranging a meeting with one of his carers next visit is a good way of pinning them down. I know they are very busy people but I will feel better knowing what is happening with medication etc.

    I have to put my child and husband first because my dad chose not to have a proper relationship with us when we were growing up. I say "WE" because I did have a sister - now passed away.

    I feel I must do what I can and applying to be receiver to help pay his bills and emptying his council flat last year whist having a 4 month old baby at that time was hard work. Thing is the carers probably don't know our background.

    Anyway great advice and I need to do a bit of reading about the illness on this site.

    Thank you
     
  10. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Yes, it's obviously very different looking after a parent who didn't care. And if you explain the circumstances to the professionals looking after him, surely they won't expect the same level of caring from you.



    Lila
     
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Stages

    Everyone's different.

    The wife of a friend of my mother's had early onset dementia about 20 years ago, and still seems to be in much the same state as she was then, mostly at home with him looking after her, spending 1 week in 8 in a respite place, and going on caravan holidays together. He wrote in reply to my letter about my mother's death. He'll miss her letters, as will so many other friends and relations.

    Lila
     

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