1. Elise

    Elise Registered User

    May 12, 2005
    23
    Hi all

    Not logged on for a while after thinking dad was OK in new home and settling in OK, but he seems to have gone down hill. His speech is much worse and i am finding it really hard to understand him. The other day i went to pick him up to take him home for some lunch, but when i got there he was in the bathroom being shaved, when he came out, it has to be the worst i have ever seen him. He was in a real state. Making a strange noise like a child would do if they were pretending to shoot a gun at people along with the hand movements as if he were shooting a gun. I tried to calm him down and for a while he did not seem to know who i was, even spitting at me. He was really distressed and completely disorientated. I have to say i felt so scared and panicked as i said he has never been so bad. I could not get him to respond to coming home with me, he just seemed to shut off from me. The staff were telling me he would be OK to take home for a while and were trying to encourage him to go but i new if i got him home i would be in a lot of trouble. But not one person said to me they thought it would be not such a good idea to take him, I decided not to take him. He did not eat his dinner that day which is so unusual as he loves him dinners and puddings and just kept spitting it all out. To day i asked what the doctor had to say about his behaviour and i was told that i had no need to worry, its just the progression of the illness, but they find that he is worse after i have visited and that maybe i should not visit so often. Angry is mild to what i was feeling at this time. How dare they tell me not to visit so often. "I am all he has." Yes maybe when i have gone he gets agitated but surely they are trained to deal with this and should be able to work towards calming the patient. I go and see him every other day and if i could see him every day i would!. Am i wrong in thinking this? Has anyone been told this about there loved one? Some of the staff there are very nice and caring, but some i have realise are so forceful. I caught one member of staff while feeding someone almost shoveling the food in her mouth and with some aggression and when she realised I saw her she changed her manner. I am so sorry to go on but at this moment feel so helpless yet again because i feel i have made the wrong choice yet again and if i move him somewhere else it could harm him even more. I HAVE THIS ILLNESS. I HATE THE WAY I FEEL. SEEING DAD TRAPPED AND HELPLESS. I feel sometimes i am going mad with the guilt and sadness i feel all the time. Watching someone so precious just slip away and there is nothing i can do to help.

    Much thanks
    Elise
     
  2. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    Hi Elise,

    Sorry to hear your dad is going through such distress, which of course is very difficult for you. I don't know what to advise, but it does seem like at least some members of the staff at his home are not very good. The home where my mom is definitely encourages family visits at any time. Do you know if this home has discouraged the families of any other residents from visiting often? Can you talk to the doctor directly as opposed to getting his assessment through the staff? I'm in the U.S. so things are a bit different here, but maybe the Alzheimer's Society can help you if you have doubts about the home.

    I hope your dad has some happier days soon.

    Karen
     
  3. 1234

    1234 Registered User

    Sep 21, 2005
    43
    bradford
    made me cry

    saw your post and it made me cry, when you said they told you not to visit so often as you caused distress, Iwas so angry on your behalf,my aunt is in a home and i can tell you they do not like my visits because iof i see a resident in distress i seek out managment and demand some action, my aunt does not wish me do this on her behalf ( i wonder why) i understand they have alot to contend with , but when i hear a patient just asking for a drink or the loo with no action being taken it makes my blood boil, this is a private home where the relations are payin g dearlly for what they think to be excellent care , beautifull surroundings & bedrooms, but that isnot what care ia about, sorry to ramble on but as my husband is in the early stages of Ad and the thought of him in this situation really makes me so angry
    Pam
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Elise

    Firstly, I'm so sorry things have deteriorated in this way.

    I'd want to be talking to the doctor - face to face - as soon as possible and making my concerns really clear; don't hold anything back. I would be asking about the medication regime, whether and what changes have been made since he has been in there, etc. Medication, if not appropriate, can make them deteriorate really fast. The good news is that they can usually be brought back by changing to something better for them. But it needs somebody who knows what he SHOULD be like to know that he is not that way. That is YOU! The staff may just think he has always been like this, likewise the nursing staff and even the doctor

    Does he have Alzheimer's or another dementia such as vascular? Or a combination?

    Is there a particular member of the care staff who has established any sort of good relationship with Dad? This happens and then often it is best to make them the key worker for such a person, so there are less changes of face than might otherwise be the case.

    Does he have his own room?

    Do you take any bits of food in? Does he eat them okay if so? It may be the home will have to change his diet to suit him - not them. What sort of food do they make?

    All these things have an effect. Have you talked to the home manager, rather than the staff?

    Please don't berate yourself. Put on the positive hat and for a start, take in a cake or drink that you think he might like. If he does, then build on that as it will make the both of you feel better, and make you feel involved in his care.

    If he doesn't like what you take in, try something else.

    And don't necessarily stick to things he has liked in the past. Their tastes change.

    Good luck!
     
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    That makes me so mad too!

    :mad:
    You have every right to be mad at the things the people at the home said. One thing I've learnt from carers at homes, is that too many think that they know your loved one better than you.

    I take some enjoyment from the fact that I can tell them a day before Dad shows signs of being ill that all is not right with him, I can tell them his pants are dirty without even checking or smelling it, I can lead him anywhere and get him to sit down, without a battle whereas they can't. That's from visiting him daily and knowing him. At first they used to 'humour' me, but they've learnt that I mean business and that #1 priority for me is Dad.

    The other day I went in and his pyjama button up shirt was on backwards and the excuse was they couldn't get his arms into it, so why wasn't a T-shirt used I asked, so you could stretch it over his arms??

    Another day they had told my Mum that I had told them not to give Dad his cups of tea anymore, like hey I did, he LOVES his cup of tea. When I confronted them, nobody could explain why someone thought I had said that he didn't have tea anymore but there were some murmurings that he didn't drink it when given it. I have never had trouble giving him his cup of tea (he actually watches the tea lady incessantly till he gets one) but I have found they either don't put sugar in it, they serve it to him too hot or ice cold.

    DON'T let them tell you what to do. Brucie has good advice. I'm not sure if your Dad's behaviour is just a progression of the disease, it could be, but I've found with my Dad that, strange behaviour (stranger than what is normal for him anyway) is a sign of either illness coming on, problems that he can't tell me about, and I sort out by trial and error (check his pants, watch who he looks angry at, see his reactions to other inmates and so on), a sign that he is about to go downhill again into the next stage, or the medication.

    Lastly you were right in not taking him home that day, and they should have seen that and to suggest that you don't visit is RIDICULOUS.

    Best of luck,
     
  6. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Elise,

    I'm sorry that things aren't going too well at present. I have nothing to add to other's comments, but the one thing that really made me mad is when it was suggested that you visit less often. At my Dad's Home, we're encouraged to visit as often as we like, in fact my Mum goes every afternoon and several others do too.

    Then again, the problem may be that you may asked the wrong person - some, as you say, are very nice and caring, others appear to be a little less 'tuned in' to the thoughts and feelings of us visitors. Trying to give people the benefit of the doubt, I suppose it's possible that they were trying to spare your distress, but they have inadvertently added to it instead! I think I'd be trying to speak to one of the other carers next time, or better still to someone with more authority, like the doctor, as Bruce says.

    I hope things improve for you soon.
     
  7. Elise

    Elise Registered User

    May 12, 2005
    23
    Thanks to all

    Thank you everyone for your response to my moan the other day. Like i said to Brucie its nice to have strong voices that can give encouragement and help keep me going. Like i have said to so many people that i am so grateful for being a member of this site, its almost like having the family support that i just don't get from my own family.

    Thank you
    Elise
     

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