Hello. I hope I do this right!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by 88alli, Jan 13, 2007.

  1. 88alli

    88alli Registered User

    Jan 11, 2007
    Hello everyone
    I have only just joined. I am so glad this exists! My M.I.L. was diagnosed with AD just before Christmas, although we had our suspicions for a while. Things with her are deteriorating quite rapidly. She lives in her own home at the moment, but for how much longer I don't know. Social services are coming to assess her in the near future. I am cooking for her so at least I know she is eating. My husband is her only Son. It is so hard not being able to have another family member to talk to/share problems. I have had a quick scan through letters here and you all seem so supportive to one another, I hope I can help someone and that I may get help too.
    My M.I.L started Aricept as soon as she was diagnosed. So far it hasn't made any difference at all. Maybe the only thing it appears to have done is make her more withdrawn. She doesn't seem to want to come out of the house anymore. Even though she only lives a few doors away from us and used to be on the phone many,many times a day, she doesn't even do that now. She goes to bed at strange times. She also thinks that someone is stealing her belongings and is getting quite paranoid about that. Next week I have to take her back to the doctor, he said he wants to increase the dose of her Aricept. I think he is going to get quite a shock when he sees her. Her deterioration is quite dramatic. Is this normal? Is there a normal with AD. Patients seem to vary so much . My M.I.L is one of seven children and four of them have AD. I find that scary!
    Anyway, I will close for now as I seem to have gone on a bit!! It's just nice to have some much needed support.
    Love and stuff
  2. Áine

    Áine Registered User

    Hi Diane. I don't think there is a "normal" for AD. My dad deteriorated very rapidly, whilst things seem to change much more slowly with other people.

    ...... and because dad deteriorated so rapidly, one of the things I found most hard to deal with was not knowing what was a) him simply deteriorating, b) the negative effects of medication (he was tried on exelon and aricept and amitriptyline at various times) c) the negative effects of having stopped the medication.

    one thing I remember the psychiatrist saying though when she started dad on exelon is that they tend to start people on a very low dose, probably less than a therapeutic dose because it can have unpleasant side effects, especially stomach upsets. Then once they know whether someone can tolerate it they increase the dose. That might make some sense of why the aricept hasn't made any difference to MIL and why the GP now wants to increase the dose.

    best wishes
  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Dianne
    welcome to Talking Point,you will find much support here.
    MIL is probably on 5mg there are two strengths 5mg and 10 mg.
    Hope this is helpful,keep in touch .post after MIL has seen the Dr again.
  4. mel

    mel Registered User

    Apr 30, 2006
    Hi Diane (and Richard)
    Glad you found Tp....you'll find it a great support and learn so much from the members.
    The going to bed at strange times, the belief that things are being stolen all seem to be part and parcel of this horrible illness.
    Take care and i hope you get on ok with your next visit to the GP
    love xx
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Diane, Welcome to TP. I`m sure you`ll get lots of support here.
    I can`t tell you much about Aricept, because it didn`t agree with my husband. He had very dramatic hallucinations and had to stop taking it.
    The deterioration could level out once the medication gets into her system and starts to be effective, but from what I`ve read on TP, everyone is different.
    Sometimes my husband seems to be deteriorating rapidly but at other times he seems OK. It`s really difficult to work it out.
    That she doesn`t want to go out as much might be because she`s frightened about what is happening to her or she`s losing confidence. The paranoia seems quite a common symptom.
    When my mother was thought to have Alzheimers, her GP, who was also mine at the time, said he`d monitor me. I`ve moved away since then and my mother was found to have Global Dementia. My son is quite concerned about himself, because his memory is poor, but I think it`s because he has too much to do and not enough time to do it.
  6. Lila13

    Lila13 Registered User

    Feb 24, 2006
    My mother died less than 3 weeks after starting Aricept. Of course I don't know if the Aricept caused her sudden deterioration and death, no-one else wanted to know if there was a causal connection. So I can't help wondering if that has happened to others too.

  7. 88alli

    88alli Registered User

    Jan 11, 2007
    Hi Lila
    Thanks for your reply. I am so sorry that you lost your Mam so suddenly under those circumstances. Was there not an investigation launched into her sudden death by your Mams doctor?
    I am a Pharmacy Dispenser, in training to be a qualified Technician. I have looked in all our books available in our Surgery to find as much info about Aricept. I know patients with certain heart problems cannot be prescribed Aricept. My Mil does have a heart problem, but her doctor stated that after an ecg, he would prescribe it anyway. The hard thing I am finding is not knowing wether the symptoms she has is due to the AD or wether it is in fact the Aricept. This week I am back with her to see her doctor. I will ask more then.
    Thanks for your input Lila, and again my deepest sympathy to you and your family for your loss.
  8. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Thanks. No, the doctors in the hospital where she died obviously thought it wasn't worth having a post mortem about, I suppose they are too used to elderly patients dying of or with dementia and aren't interested in individual details.

    I think it is quite possible my mother was hoarding her pills and then took a lot at once. I was relying on the carers to check her medication, but she said "I don't need carers to give me pills".

  9. 88alli

    88alli Registered User

    Jan 11, 2007
    thanks to you all!!

    I just want to say a huge 'thank-you ' to you all for all your replies. Your help and advise is so much apreciated. I just want you all to know how much you are all valued.
  10. English Lady

    English Lady Registered User

    Jan 14, 2007
    Richard and Diane,

    Someone back there was right. There is no such thing as "normal" experience when it comes to dementia.

    All the people I've looked after have been entirely different in the way they deal with it and in how they've received treatment.

    I am going to join my local AD support group; as a carer in a care home, I want to know more about ways of helping people with the condition.

    Perhaps you might find even more help if you join yours. There are links on this site.

    Like so many other people I've linked up with here today you seem so supportive of your mother and it's great to see, as a carer in a care home who doesn't often see the other side of things for families, this is a great insight for me.

    It helps us all to work together.

    My best asset so far has been my sense of humour, which I have fallen back on many times. I know these people are not MY relatives but I genuinely care for them.

    I am in awe of the strength, fortitude, courage and sheer determination of people I've encountered on here today. What a great insight.

    I'm off now for some tea - then to get on with my Dementia course - all the better for hearing some of the stories here.

    I hope to catch up with all of you again soon to see how things are progressing for you.

    Much love and blessings to all xxx
  11. Susi T

    Susi T Registered User

    Jan 12, 2007
    Leamington Spa
    Hello Diane, at the moment my dad has not been offered any medication at all, on my first visit to the doctor (this time last year) he told me my father had dementia. something I find it worrying that if I hadn't attended with him I would have been non the wiser! I attended because I was concerned that my father wasn't taking his medication correctly. I think he has not been offered medication because of his heart condition. I am attending a doctors visit next week so I will be able to ask. His regular sleep disturbance at night is getting to be a regular event!
  12. 88alli

    88alli Registered User

    Jan 11, 2007
    re visit back to doc

    Hello everyone.
    This afternoon we took MIL back to see doctor. He checked her pulse and then stepped her aricept up to 10mg dose. No improvement in her really. I went shopping for her yesterday and got her loads of foods to tempt her appetite, but she isn't eating anything. I always cook her her evening meal, but she seems at a loss at how to make a simple sandwich, for her lunch. Yesterday Richard called to see her and she was having a hot drink. He asked her what on earth she was drinking. She had sliced some mature cheddar cheese, placed it in a mug and poured over boiling water and was drinking it.!:eek:
    The doc is going to chivvy up Social Services to call on her and have her assessed, The psychiatrist was supposed to sort that out, but then again he said he was writing to MIL's doctor as a matter of urgency, (that was six weeks ago and guess what? doctor is boiling because he has received no letter). I must be grateful that at least she is being treated with aricept. Maybe stepping up the dose we may see something of a change. Thanks to everyone our there, just for being there!
    Love 'n' stuff
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Diane, Your poor MIL. Your story about the cheese drink made me feel so sad.
    Is there any chance for day care for her. If it could be arranged, I`m sure it would ease your mind. Not only does she need medication but I would think she needs some supervision too. Could you see if you can hurry up her assessment. A bit of a prompt to Social services wouldn`t do any harm.
    I hope you get something sorted. Sylvia
  14. 88alli

    88alli Registered User

    Jan 11, 2007
    Hi Sylvia.
    Thanks for your advice, appreciate it:D MIL'S doctor is trying to hurry social services up for an assessment. He is being really good. His gran had AD and he said her will never forget what it put his family and Gran through. He said MIL should be entitled to all sorts of benefits? I don't know the slightest thing about benefits. He said there would be afternoon sessions she could go to and also lunches where she could have a bit of company. It is very hard. At the moment I am in the middle of finishing one qualification, then I have another to do, as well as working full time at the moment. I worry constantly about what she is doing. We always make sure she has a substantial meal with us in the evening, but I will be honest, there are times when we feel absolutely worn out. So yes I can't wait to get some help in. I do not want to appear selfish, but I had a 15 year gap from my work whilst I brought up my two children now 13 & 15. Last year I decided it was time for me to get back out there and pick up where I left off. I am enjoying it so much. My goal is to become a fully qualified Pharmacy Technician. I do feel quilty at times for not wanting to give my job up, but I honestly couldn't cope with being her full time carer. I have nothing but sheer admiration for those that do. I truly don't know how they do it. Thanks Sylvia for your help and yes I do hope ss will come soon.
    Many ,many thanks.
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Diane, No you shouldn`t give up your studies and chance of further qualification. Nor should you feel guilty. Your MIL will probably need residential care eventually, and if you did give up now to look after her, you`d have to start again from scratch. That`s too much to ask of anyone.
    I`m glad you have a sympathetic GP who knows what it`s like. I hope you don`t have to wait too long for help.
    All the best, Sylvia x
  16. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Diane,
    Don't feel guilty about your career - your MIL would not want you to abandon it, if she understood what was going on.
    Social Services will be able to tell you what support mum is entitled to ; if she is self funding then they will be able to put you in touch with agencies. Working, raising children, caring, taking qualifications - an exhausting combination. Make sure that you look after yourself, if you become ill then you will not be no use to anyone.
    Love Helen
  17. 88alli

    88alli Registered User

    Jan 11, 2007
    Thanks Sylvia.
    I know deep down what you say is right. The team I work with at Surgery are very supportive, and tell me not to even think of giving up work. My Boss, a really nice man is also very supportive. Even though he is a really busy doctor he always says his door is open if ever I need some support. When MIL was first diagnosed I went in to work and was very quiet, that's not like me!! He came and said he was concerned I was upset, so I told him everything. He was an absolute treasure and I know what he said made perfect sense, I think even though, we all have this feeling of guilt dont we? I guess it's because we can't 'make it all better', there is no betterness is there? plus I don't want to take my troubles to work. I am going to close now, I guess I am feeling a lot lower than I thought, a lot doom and gloomy tonight.
    Thanks again
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Diane

    Haven't replied to you before, I've been feeling too low myself, but I have been reading your posts, and I do sympathise with your situation.

    It must be so hard, coping with your own family, a career, and worrying about your MIL. All you can do is keep on at SS. Your mum needs help during the day, and you can't provide it. She needs day care, or someone coming in to make sure she is OK at regular intervals.

    Don't feel guilty about your job. You need it, and you need to have it for when your MIL has to go ionto full-time care, and that may not be long, the way things are progressing. You are lucky to have such a supportive boss, you mustn't give it up now.

    I'm struggling to look after my husband, but I would never want any of our family to put their lives on hold to help us. You and they are the future.

    Hope you get help soon.

  19. Margarita

    Margarita Registered User

    Feb 17, 2006

    I also found that with my mother and she was put start on Exbixa (sp) Also the seeing thing that are not there , sleeping odd hours after a while it all stop, my mother stared on 5mg then 10mg twice a day , but I must say it took a good year for the full effect to go in to her system, but then every one system(body) is different In how they react to medication , even the paranoia stop

    Yes we our made to feel grateful for any human right medication for dementia, when you really think about it is our human right to be given medication for dementia that is available, even thought government , that does boil down to NICE ruling think otherwise

    Yes no the feeling and sounds to me from your posting that your doing the best you can. good luck

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