1. Q&A: Medication - Thurs 22nd November, 3-4pm

    Do you have questions about medication and drug treatments for dementia? There's no drug to cure dementia yet, but it's often possible to relieve some symptoms.

    Our next expert Q&A will be hosted by Simon from our Knowledge Services team. He will be answering your questions on Thursday 22nd November from 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Trying hard to cope

Discussion in 'Welcome and how to use Talking Point' started by Joyful, Sep 3, 2018.

  1. Joyful

    Joyful Registered User

    Aug 26, 2018
    11
    Hi
    My husband was diagnosed with Alzheimer’s last February and up until a few months ago wasn’t too bad. Since then has become very anxious panicky and gets very upset about how he feels. He doesn’t like to be on his own and follows me round the house. Our family live away so have no one to sit with him so I could go out for a hour or so. He isn’t interested in anything so difficult to keep him busy. Anyone any ideas.
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    4,820
    Male
    Bristol
    Welcome to TP, Joyful. That is a bad state of affairs for you and for your husband, especially that feeling of being trapped. Does your husband have carers in for personal care? My partner has an outside carer who comes in for 3 hours one day a week allowing me to get out and about a bit longer than usual. I asked for it as part of a carers assessment and simultaneous care needs assessment from Social Services. I don't know if you have already had Social Services assessments, well worth asking if you have not.
     
  3. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,231
    Male
    Cyprus
    Hello @Joyful, welcome to TP from me too.

    This shadowing is possibly a symptom of anxiety. My wife does this too. Your GP should be able to help with that as my wife is on meds for depression and anxiety as well as Alzheimer's.

    Apathy, depression and anxiety are very common in dementia and there is an AS Factsheet about it that can be located with this link https://www.alzheimers.org.uk/sites...ownloads/factsheet_depression_and_anxiety.pdf

    You may also get some benefit out of checking for support services in your area and you can do as post code check by following this link https://www.alzheimers.org.uk/find-support-near-you

    I hope that some of this helps and that, now that you have found us you will continue posting as you will get support here from people who understand.

    You can take a more specific look at support services by following this link https://www.alzheimers.org.uk/get-support/your-support-services
     
  4. Joyful

    Joyful Registered User

    Aug 26, 2018
    11
    Hi
    Thanks for info. Got an appointment at doctors re change of medication. I haven't wanted to involve social services yet as he is not keen on strangers coming in but a couple of good friends have offered to help out if needed. I also struggle with the constant questioning: What do I do now? Where do I go? What do I wear? Where's my glasses etc. How do I do that? I have put labels on cupboard doors all over the house but he still asks me and it's very hard not to shout. Then again I'm only human.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    67,077
    Kent
    I found with my husband , @Joyful, I was his security.

    If I went into the kitchen to make a cup of tea, he would greet me as if I`d been out, when I took the tea in to him. It was as if all concept of time and proximity had left him. If I was in another room, he didn't realise I was under the same roof so followed me about.

    I put pictures on cupboard doors and the doors into rooms but he didn't`t seem to see them or make a connection.

    My husband also wasn't`t happy to have strangers come into the house but the agency carers I got agreed they would profess to be coming to help me with housework so I`d have more time for him.

    I was persuaded to get agency carers in by fellow TPers who suggested I should wean my husband to accept help from others just in case I was incapacitated and needed help.

    Direct Payments helped me get two hours daily respite care and the carers. who were dementia trained, slowly gained the confidence of my husband and helped him become much less suspicious of others.
     
  6. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,044
    south-east London
    Hello @Joyful

    I am glad that you have organised an appointment with the GP to look at medication.

    Hopefully they will also check for a UTI because, although this 'clingy' behaviour is a common manifestation of dementia, sometimes the increased anxiety can also be a sign of infection.

    My husband used to have episodes where he didn't let me out of his sight but it wasn't a running theme throughout his illness, it just cropped up here and there, so don't think that because this is what is happening now, this is what is going to happen for ever more.

    in fact, as things progressed, my husband thoroughly enjoyed his time away from me when he went to a day centre one day per week (later two days per week) and was very relaxed there. The extra stimulation he enjoyed away from me was good for both of us and helped build his confidence and happiness.

    I found that making sure my husband still felt he was useful also helped build his confidence - so I would involve him as much as possible with household chores, even if it meant I had to do them again (properly) when he was out of sight.

    Repetitive questions can be wearing and I do feel for you. In our case I found it helped a little if I kept reiterating things in my general conversation without waiting to be asked a question.

    For instance, I knew my husband would always be confused on waking up, not knowing what the day held. So, instead of waiting for the questions I would say things like 'good morning, we are off to the park (shops, cafe, bank etc) today'.

    Then when it was time to shower, I would would reinforce the memory with 'let's get washed and showered so we can go to the parks, shops, cafe, bank etc.

    Likewise with breakfast I would say ' let's have breakfast and then we will be ready to go to the park (etc, etc).

    It won't work for everyone, and being repetitive ourselves can be tiring in itself, but the regular reinforcement was something that worked for us and seemed to keep my husband stress free for the most part. It also stopped me sitting with gritted teeth waiting for the constant repetitive questions that would have followed had I not been pre-empting them!

    Needing help in choosing what clothes to wear is also a common part of the dementia progression. For years, my husband was able to sort out trousers, socks, underwear for himself but I would then offer him a choice of two suitable tops to choose from. Eventually, making a choice between two tops in itself would become a struggle, so instead I just took to laying a complete set of clothes for him to change into once he was out of the shower. It removed the stress for him and he maintained his feeling of independence in being able to get himself ready for the day.

    Of course, all these approaches had to be adapted as the disease progressed. In time I had to use much shorter sentences when speaking about our day, but I still found a way of using key words to remind him what was planned.

    Likewise, with dressing, my husband eventually needed help with putting clothes on. At that point there were days when I went back to giving him a choice of two tops and days when I made the choices for him - depending on how confused he was at the time.

    It is very much trial and error to find out exactly what will or won't help for each individual.
     
  7. Joyful

    Joyful Registered User

    Aug 26, 2018
    11
    Thankyou for your reply. I took my husband to a day centre today but we were only there 5 minutes and he wanted to go and no amount of persuasion would make him change his mind. As we were going out one of the nurses ( it is at a local hospice) came to speak to us and after 10 minutes she had him eating out of her hand! We are going back next week hopefully! I will try your other suggestion too.
    So good to hear from someone with similar experiences. Thank you.
     
  8. Joyful

    Joyful Registered User

    Aug 26, 2018
    11
    Thank you. I think I will have to go down that road with carers.
     

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