Not sure if my dad has dementia

Discussion in 'ARCHIVE FORUM: Support discussions' started by JackaNoodle, Oct 29, 2005.

  1. JackaNoodle

    JackaNoodle Registered User

    Oct 29, 2005
    5
    Oxfordshire
    Hi, I just joined, and am so glad to have found this site :)

    My dad is 80 years old and has been suffering from severe memory loss for a couple of years or so (maybe longer). It's worse than what most people would consider normal for old age, but I'm not sure if it's dementia. He can easily remember things from years ago, but his short term memory is practically non-existant.

    The problem is, I live in Oxfordshire and my parents live in Essex. My mum has always let dad be the one to sort out any problems, and she is not very assertive. I've asked her several times to talk to dad's GP about his bad memory, but I can't get a straight answer out of her. I feel it's really important that dad is properly diagnosed, so that if he does have dementia, we, as a family, can make appropriate plans for his future and for my mum's future. If I lived closer to him, I'd march him round to the doctor myself, but feel limited in what I can ask my mum to do :rolleyes:

    The thing is, I'm not sure if his memory loss is just that - bad memory. He doesn't have any signs of dementia other than the occasional panic when outside of his normal environment, e.g. he went to visit my brother in Cheshire recently and panicked about the smallest of things which normally would not have bothered him. He has a regular routine at home, can still drive and plays bowls as well as board games with friends and family. He goes to the theatre and concerts on a regular basis and enjoys day trips out. He can't read books anymore, but does read the newspaper and does crosswords etc.

    I don't get to see him very often, I'm agoraphobic, so travelling to Essex is a major project for me. I do have a sister who lives locally to my parents, but she's busy and I don't know how involved she want's to be. I want to push my mum to get dad diagnosed - but am I over-reacting?

    I'd really appreciate some input from those of you who know that your family member/friend has dementia. Did it start out really slowly? What prompted you to get a diagnosis? As far as I'm aware, my grandfather had Alzheimers, and I'm more than a little worried that I'll follow the same path as my dad and his dad. I'm in my 40's and already have a very bad memory - often asking my husband the same question twice over, because I don't remember asking him the first time :eek:

    Any advice or help will be most gratefully appreciated.
     
  2. Mirium

    Mirium Registered User

    Oct 29, 2005
    23
    Surrey
    Mirium

    Hi and welcome! I too am new today.

    I know how you feel. I had to work hard to get my dad to take my mum to the GP.
    He took her eventually when I told him of a friend of mine had taken her mum to the doctors because of her bad memory, and that she was given medication that helped her greatly. There was no mention of Alzheimers or dimentia, just poor memory.

    In mum's case she was referred to the Memory clinic, had blood tests, MMSE test,and a CT scan. She was prescribed Aricept this week, so we wait with baited breath to see if it makes a difference.

    We did find out that the earlier this medi is taken, the better, so that might encourage your mum to go to the GP. Apparently it is not a cure but can delay the symptoms from getting worse for up to 2 years,

    Mabe someone else will have more info??

    I just typed Aricept into Google and got all sorts of info.

    Hope all goes well, keep in touch.

    Mirium
     
  3. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello! I too am so pleased I found this site when my Mum had been diagnosed over a year ago. For us, it was first of all a case of something not being quite right with Mum following an episode of fainting one day. This was 7 years ago. Gradually, there were odd little behaviours/reactions to things and then, following the death of my Dad 2 years ago, the realisation that she was far from well, short-term memory very poor. The diagnosis of early stage dementia followed.

    We had to get a diagnosis as Mum had become a widow and was unable to cope alone -it came as quite a shock to find she was struggling so much. I had known something was amiss, but never for one moment did I think she was as bad as I then found her. I am convinced that it started 7 years ago with the faints and it has slowly but surely continued its course.

    Following diagnosis (it was a struggle to get Mum to see the GP as she insisted she was fine), she was put onto Aricept which I believe has kept her fairly stable, though little by little, she is still slowly declining.

    I hope that this helps ....and good luck. You'll find lots of help here.
     
  4. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi JackaNoodle, Mirium and all newcomers,

    Welcome to TP, as Lulu says, they'll be lots of help here.

    "I feel it's really important that dad is properly diagnosed... but feel limited in what I can ask my mum to do."

    Many people have this problem, JackaNoodle, I expect your Mum is also worried about your Dad, but unsure of how to get your Dad to the doctors and also frightened of the possible outcome if he does go, so in some ways it's easier to try to ignore it at the beginning. I would be inclined to agree that it would be better if he went and do not think you are over-reacting. There's no use speculating until you have a proper diagnosis. If getting your Dad to agree to go to the doctors proves tricky, here's some previous threads which may help:

    http://www.alzheimers.org.uk/talkin....php?t=1912&page=1&highlight=doctor+diagnosis

    We were prompted to get Dad to the doctors after several 'odd' episodes and when he was constantly losing keys, getting confused etc.

    Let us know how it goes and keep posting!

    Best wishes,
     
  5. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    My mom's dementia started fairly slowly, and my husband and I weren't really aware of how bad it was getting for some time. Back around 4 or 5 years ago, my parents were living together in an apartment in the "independent" level of a 3-tier retirement community (independent, assisted living, and nursing home). My dad's physical health was deteriorating; he has a nerve disease which now has him entirely confined to a wheel-chair. At that time, he was still walking, etc., but with increasing difficulty. He finally got so ill that (after a round of hospitalizations, etc.) he had to move to the nursing home.

    That's when we discovered how much my parents had been tag-teaming it -- Dad doing the mental work and Mom doing the physical. Now that they were apart, Dad in the nursing home and Mom still in the apartment, it became apparent how much neither of them could function alone. Dad was being taken care of in the nursing home, but it was a downhill slide for Mom over the next years with ever increasing amounts of help from us, paid companions, and the staff at the various places she has lived.

    Karen
     
  6. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    #6 blue sea, Oct 29, 2005
    Last edited: Oct 29, 2005
    Welcome JackaNoodle and Mirium

    My dad had very similar memory issues to yours, JackaNoodle, and did go on to be diagnosed with dementia, but only after about 5 years of very gradual deterioraton. This does not mean your dad has dementia of course. It was only when mum died that we realised how bad dad was and took him to the GP. After the bereavement the dementia become very severe very quickly, but in the first 5 years he managed fine at home with mum and enjoyed a normal social life. It is true that some forms of dementia seem to be slowed down by some drugs so I can see the advantage of getting an early diagnosis. Also it might not be dementia, just natural ageing memory loss, which would put all your minds at rest. On the other hand I can see why your mum and dad might prefer not go to the doctor as they are happy and managing well. Seeing the GP is like an acknowledgement that something is wrong. Looking back I realise that my mum was 'hiding' from us (and perhaps herself) the reality of dad's worsening situation as a way of denying that it was happening. There is also the consideration that dementia can progress extremely slowly so that someone in their 80s could die of something else before the dementia actually became a real problem. I now feel glad that mum and dad did not know he had dementia in their last few years together.

    I know none of the above answers your problem, but then there is no 'right and wrong' answer for you. It gets very hard as we start to go into reversal of roles with our parents. We have to tread gently and not 'take over' before we really have to. At the same time we feel an increasing responsibility for their welfare. You can't force the issue with your mum but if you are able to keep the topic open with her in a supportive way, she might come round to your view gradually. A private chat with the GP, without your dad there, might be the best starting point for her. Most GPs are experienced in dealing tactfully with this issue and often use the phrase 'memory problems' rather then 'dementia' when talking to the patient. If your mum isn't ready to accept there is problem, I would let it go for a bit and see how things progress. One practical detail that would be very helpful would be if they both signed enduring power of attorney forms (see this web site for details). This is sensible advice, even if both are in perfect health now. It would also be worth checking if your mum and dad have joint accounts, so that your mum could access money easily should your dad start to find it difficult to manage finances.

    Whatever you decide, try not to worry. We cannot know what lies ahead, for our parents or oursleves, so enjoy life now. Inheritance issues are very unclear for illnesses such as Alzheimer's so I wouldn't waste your energies on that one! Keep us posted about how things go. You're there for your parents when they are ready for your help. Geographical distance is a practical problem but you will surmount that. It's your love for them that will matter.
    Blue sea
     
  7. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi JackaNoodle and Mirium,

    Welcome to Talking Point.

    Jackanoodle, your situation sounds similar to ours. We live approx 90 miles from my husband's elderly parents (80 and 84). We used to see them every month for Sunday lunch. About two years ago we noticed my father-in-law's (FIL) short-term memory was getting very bad. He would make the same comment over and over, constantly check and re-check keys and credit cards, could not remeber details from previous visits/events.

    We put it down to normal aging at first, though my husband and I talked about AD away from the in-laws. When my MIL started commenting on how my FIL was losing his temper and swearing and having difficulty carrying out some household repairs (as a trained engineer, he had been very good at this previously) we thought something was defintiely wrong. The real giveaway was the state of the garden - which used to be immaculate. It was clear that my FIL had also lost initative.

    We carefully broached the subject with them and like your mother, my MIL was used to her husband making all the big decsions. My FIL refused to see the doctor. At that point he was openly saying that his memory was going, but just point blank refused.

    In the end, we had to resort to subterfuge. My MIL had a routine appt. with GP and my FIL always accompanied her. This time my husband took the day off work and went along too. He handed the receptionist a letter outlining our concerns, which was given to the doctor before they were called in. Once the doctor dealt with my MIL, she started asking my FIL some general questions about his health. He said he was fine but then (with my husband doing some prompting) admitted his memory wasn't what it used to be.

    The doctor recommended blood tests which my FIL didn't object to and after that he just complied with further appointments at the memory clinic and for a scan at the hospital. It was really quite a good thing that he saw the GP because, in additon to AD, it was discovered that he has myeloma - a form of bone cancer.

    What is your father's own assessment of need for an appt. with the GP?

    If he is in the early stages of AD, he will know that something is wrong and may be desperately trying to keep up appearances and yet be very afraid (the anxiety at your brother's house sounds very like this kind of thing). One way to deal with this is to say that there are modern medicines which can help, but they are most effective when taken early - the earlier the better.

    You are definitely not over-reacting. Many people on this site will say that they knew that something was wrong many months, if not years, before the formal diagnosis. I would really recommend that you and your sister and brother (and any other siblings) have a long chat about the best way to get your dad to the doctor, in a way that your mother is likely to agree to. It is quite possible that she is also compensating for him and scared herself.

    Take care,

    Sandy
     
  8. JackaNoodle

    JackaNoodle Registered User

    Oct 29, 2005
    5
    Oxfordshire
    Hi all, and thank you so much for your replies - they mean a lot to me.

    I'm sorry I didn't reply sooner, and those of you who are in the UK with me, you'll notice from my posting time that it's now the middle of the night. I got a really bad head cold (having just got over one a few days previously), and it is really knocking me for six. A bit ironic that I also got my flu jab today (I'm diabetic), and am now waiting to see if I'll get better or worse LOL ;) (at least my kids are back to school tomorrow) :D

    I emailed my brother and sister-in-law (SIL) to see if they had any fears about dad having dementia. Their view, and apparently that of my sister, is that dad is just suffering from bad memory brought on by old age. It would seem that the three of them have already discussed this in detail, but failed to let me in on the discussion - I might be 8 years younger than them (bro and sis are twins), but I'm still an adult (sometimes they forget that) :mad:

    My SIL, who emailed me back, went on to say that the 3 of them have also decided that it would not be a good idea to encourage my dad to get tested. They feel that it would only make matters worse as dad is already well aware that he is forgetful.

    Part of me is pleased to see that they don't think that dad has dementia, but another part of me is mad as heck that my thoughts and feelings are going to be ignored. In my opinion, scary as it might be for my dad, if he has dementia, finding out now is surely the best option because we can all, as a family, prepare for the future. If dad one day finds that he gets lost while he's out, or can't remember how to button his shirt, won't we have let him down?

    I honestly don't know what to do. If I lived nearer to them I would contact their GP myself and just explain my concerns to him/her. I don't want my dad to have dementia or Alzheimers, but if he is in the early stages of it, surely he could go on medication that might slow down the development of it and give him a much better quality of life.

    But....I'm just the baby of the family and not really taken seriously by my brother and sister (and even less so by my SIL who has a very high opinion of herself and a very low one of me and my husband and kids.

    (Sorry, this is turning into a personal rant - but it does help to get these things off my chest).

    I'll be talking to my mum again in a couple of days and will gently sound her out to see how she feels about dad being on medication to help his memory. Maybe by planting that seed of hope/doubt, whatever, she might take the initiative herself. Well, I can live in hope :rolleyes:
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Jackanoodle
    A family can be a problem,at least some of the family members can be.
    Sorry you are feeling down and poorly,hope you pick up soon.
    The reactions of the family seem pretty typical to me.
    The denial,the covering up, "the we can cope and don,t need help".
    Your idea to talk to Mum about Dad seeing the GP is a good one.
    The GP is the first port of call and if Dad does need medication the sooner the better.
    If he does not have AD fine, if he does have it you will have done the right thing either way.
    All the advice given emphasises "see the GP".
    It matters not how you get Dad to see the Dr ,there is medication available to help if taken early enough.
    Norman
     
  10. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    Getting To the docs

    Hi everyone
    Just to let you know in my case my dad would have refused point blank to even go to the doctors so I decided the only way around it was to ring the practice manager (I too live away) and ask if a letter could be sent to BOTH my parents asking them to come in for a routine 'MOT' this would get dad to the surgery and hopefully a diagnosis. It worked but only with mum's co-operation as I told her to expect a letter from the GP. This was 6 years ago and I think this is one of the main issues of the illness to get the initial diagnosis as if like my dad who insisted very loudly there was nothing wrong with him and what did he need a doctor for? Sometimes the only way is to think outside the box and try a different approach. People of my parents generation (nearly 80 years old) are very stubborn!! :)
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Sounds so familiar


    As others have said, what you describe is so typical of the early symptoms of AD, and of course your 80yo father (just like my 86yo mother) wants to believe that HE won't be affected by old age, that's for other old biddies. Their generation saw us through a world war, they are invincible! Certainly most of them have steely backbones (together with hearts of gold), but sadly they are not immune to the ravages of time.

    My point was going to be to elaborate on Sandy's tip about using subterfuge to get the reluctant patient to the doctor's appointment. Following my Mum being quite ill with a lingering chest-infection, I made a "follow-up appt." with the Dr. and dropped in a letter the day before giving my concerns about memory loss, occasional confusion etc. However, it got lost in their Admin. system somehow :eek: , and he didn't get it until the next day!! At our appt. (fortunately she didn't object to me going in with her) I had to keep 'leading' the conversation until the Dr. took the hint, and began asking a few 'age-related' lifestyle questions. Even then, the little b***er put on her Best Behaviour Act for him, and I felt a total pratt! Butter wouldn't melt in her carefully-lippied mouth - I could have smacked her bottom. Fortunately, once the Dr. did receive my letter, he and I spoke on the phone, and I was able to explain.

    So ... (sorry for the rambling) if you are going to write to your father's Dr., do it about a week before his appt. - if you can arrange one. If you can't arrange one, I should write to his Dr. anyway, expressing your concern, in detail and asking him to add it to his case notes. Whilst Patient Confidentiality means that he can't discuss your Dad's healthcare with you without his permission, that doesn't prevent him reading your letter & noting the contents. Not all doctors react in the same way, but you have nothing to lose by asking for his help, possibly even asking if there is some way he could suggest a check-up for them both, or something of the sort. A calmly thought-out letter might be better than a stressful meeting anyway, given that you don't live locally, so that would not be very convenient for you.

    As regards the reactions of other family members, I understand your irritation at having been left out of their discussions, but perhaps they thought they were doing you a favour, as you have difficulty travelling? You probably don't see it like that, especially if you feel there is a history of you being 'left out of things', but it seems a valid reason to an outsider like me. Whilst understanding the need for a rant, try to exclude your feelings of "being left out" by the others. What matters here is your Dad & Mum, other things just tend to cloud the issue.

    Also, as Norman said, their reaction is pretty typical; denial, and believing they can cope without the help of outsiders. Also, if they see Dad more frequently than yourself, they are actually LESS likely to notice small changes, and perhaps your Mum is MORE likely to confide in you than she is to them.

    To me (huh, the great expert :eek: - NOT) it sounds as if your Dad is still pretty capable of carrying on his day-to-day routine for a while yet. My Mum is much the same, apart for losing things around the house - until something a little out of the ordinary comes up, like a social occasion or trip away from home. Then she loses her self-confidence, which is not like her "old self" (or perhaps I should say former self) at all. That's not to say the memory loss shouldn't be investigated if possible, and whatever support may be available used.

    Good luck, keep reading & keep posting; it really does help
     

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