1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 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.

Is this how it goes?

Discussion in 'I have a partner with dementia' started by hillyjay, Jun 15, 2019.

  1. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    When he was diagnosed in 2017 I was told to oversee his medication, So he's used to me doing it but that doesn't stop him from getting annoyed with me! In fact, there is currently a stand off going on with himself ignoring the pills sitting beside him. It's the evening medication which is harder administer so I tried giving it to him before the evening meal these past few weeks when he is more amenable. That works well until this evening when I missed the time slot!!

    It's hard work reading the signs and juggling with moods.
    The Lorazepam works within a half an hour but the whole tablet makes him wobbly and sleepy for the next day too. Wish me luck as I suggest the tablets again!
     
  2. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Agree it’s hard work reading the signs! Hope you managed to get him to take a tablet finally - by fair means or foul!

    Today is the day I’m supposed to be getting a call from the nurse so I’ll update you on what happens.
     
  3. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Well, a MHU nurse phoned me this morning and told me basically what I knew, that there is no other drug which can be given. However she did say that it sounded as if he isn’t in need of ‘calming’ meds at the moment but if his aggressive outbursts increase then I’m to get him to be checked first for a UTI if it’s been a sudden change (getting him to agree would be another matter. I’ll cross that bridge when I come to it!) and then get referred to them for some type of meds which might help.

    From various things I described she told me that this was indeed how things can progress and it sounds as if perhaps one of the frontal areas is now beginning to be affected judging by his occasional outbursts in the street.

    All I’d needed was some reassurance and ended up with letters being sent to him etc. Wish I’d come here first!
     
  4. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    398
    @hillyjay i agree the best thing I’ve done is come on here. The most sane, caring and insightful help. Everywhere else is red tape
     
  5. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Thanks Rach, I so agree. I’ve found I can forget red tape and bureaucracy and receive help (and sympathy if needed) from people who are living with this and KNOW how it can be and who haven’t just read textbooks.
     
  6. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Hello Hillyjay, it sounds as if I had spoken to your nurse I wouldn't have been given Lorazepam . You have to wonder about different practice and responses from agencies around the country.
    My OH had another blow today because I went to the GP for an appointment and left him with a good friend. Knowing how to manage these unpredictable moments is challenging enough for us but then to try and explain to others how I manage these episodes is difficult.

    The GP has suggested that I look at care homes with the aim to use it for respite and eventually permanently. I know where he's coming from but read about many on here who keep their relative at home far beyond where we are at the moment. I wouldn't want to feel pushed into making this decision. I am coping now but am very tired (as we all are) as I had a hysterectomy at the end of Feb and although I have made a good recovery, I would have appreciated longer to recover..
    PS He wouldn't take all the tablets last night (just the memantine) but have hit the jack pot tonight!!
     
  7. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Hi MoodyC. Do you mean you wish he hadn’t been given Lorazepam or that you are grateful he was? Fortunately I don’t have to face as many challenging moments as you do and so don’t have to worry about getting someone to be with him if I go out. On the odd occasion I’ve had to be away for a few days I get one of our sons to ‘casually drop in’ and keep a discreet eye on their Dad.

    I’m not surprised you’re finding things difficult if you had a hysterectomy so recently. It takes quite a while to get over that, I know from experience! Respite might be a good idea at the moment for both you and your OH. I wouldn’t look on it as a first step towards it becoming permanent. Look on it right now as simply something to help you out whilst you are still not really over your op.

    Congratulations on your victory with the tablets tonight!
     
  8. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    I am glad he was prescribed Lorazepam as it gives me another tool in the tool box. Giving just a half of one means that he is not too zonked out the next day.
    And thank you for your wise words regarding respite. He was in respite for three weeks whilst I had the op and settled back home but it wasn’t long enough. It cost £4,500 so wasn’t willing to pay anymore and on top of that the care was poor. They didn’t clean his teeth for the whole three weeks. It’s taken me ages to get him back to where he was and then we also have had rapid progression too, partly due to the infection he came home with and the most recent UTI.
    So want to find a care home that we can build a positive relationship with.
     
  9. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Just an update. The temper outbursts seem to have decreased only to be replaced with more muddled thinking and memory problems. Yesterday....I cooked some rice for dog who had had a bit of an upset stomach, It was to go with some bits of chicken we had.
    ‘What’s she having with the rice?’ Chicken.
    A few minutes later...’so, what’s she having? Chicken and....?? Rice.
    ‘The rice is cool now. Shall I put it in the fridge?’ Yes please.
    What’s going to go with the rice?’ Chicken!

    You can’t win, but then, we all knew that anyway.

    Have you had any more thoughts or progress on respite care, Moody?
     
  10. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Hello Hilly,
    Life is up and down, Hilly so don't know where to begin. But I am going to visit a home on Wednesday and have emailed three others. My hope is to find day, respite and eventual full care under one house but think that is a lot to ask.
    Last Wednesday, OH came food shopping with me and by the time we arrived I could tell the red mist was down so did the quickest shop ever and as we had been invited to coffee at a friend's house went there on the way home. OH made it quite clear he didn't want to stay for coffee and yes, he did want to go home. So home we came and the black looks and shouting begun.. I removed myself to the kitchen and busied myself with unpacking the shopping but the ignoring makes him crosser and he came in the kitchen, threw a chair and upturned the table. I actually said that this wasn't ok and whisked him through to the dining room and sat him on a chair, holding his hands. With this, he begun calling for help so I just left him saying I would make lunch.
    I think what broke it was me calling a support network friend to say we wouldn't be joining them for the afternoon tea group. I called OH to lunch and it was if nothing had happened.
    He hasn't a UTI at the moment so think this is progression. We have an appointment with the diabetic nurse next week as he has just begun medication and they are prescribing a Mirtazapine for anxiety, mood and sleep.
    Mind you, he refused all evening medication last night so I am going to slip it down him, I just don't know.

    To be honest, I am feeling quite down about it all, especially as he was up for three hours in the night and woke early. I managed to settle him by offering a cuppa and putting a George Harrison DVD on.
    Also, He is muddled about where to wee and has been in the bedroom twice this past week. I have asked for a referral to the bowel and bladder people.

    It sounds like our OH's are on the same page, Hilly. I feel I could cope if it wasn't for the violence and the puddles around the house. How long do you think this phase will last? I just wish we knew.

    On a humorous note, he thinks that there of two of us looking after him and neither are his wife. He gave me a piece of cake telling me to share it with the other girl. I told him she had gone home! But it was a kind thought!
     
  11. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Oh yes, they can make it very clear when they don’t want to be there. Sulky kids come to mind Interesting when you said that later it was as if it had never happened. I’ve had horrendous outbursts in the past (though he’s never got round to furniture chucking yet) and yet shortly afterwards he seems like your OH was, as if nothing had happened, while I am still knotted up inside and trying not to cry.

    It sounds as if your husband is further along the road than mine but they do both seem to present in similar ways. I don’t know about you but my husband was always a calm, quiet man with whom it was impossible to argue. I’d flare up and he’d sit there calmly. Which annoyed the hell out of me. Looks like it’s payback time

    I only wish I knew how long each of these phases would last. My OH did go through a nasty tempered, aggressive stage which then sort of fizzled away. I have the feeling it’s beginning to appear again but then, he can be calm for weeks at a time. Makes it all the more unnerving when he does let go and embarrassing if it’s in public.

    The puddles, don’t have those but a friend of mine’s husband began to do that. At the beginning it came and went but unfortunately eventually it did persist most of the time. Does your OH wee in odd places (friend’s OH used the laundry basket once) a lot of the time as if he’s disorientated or does he sometimes just not make it in time? If you’ve got carpet on the bedroom it might be an idea to rethink that... What a life!

    Keep us updated on the search for a respite home. Good luck for Wednesday and go by your gut feeling. Do you have anyone to go with you?
     
  12. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Thank you so much for your reply and understanding. It seems that this is really the place to be honest and not judged in any way. Everyone seems to know and understand because we’re all going through it.
    I was about to begin another thread called ‘When do you know?’ Because today for the third time in the past week I have been told it’s time to look into care home. I have been in denial thinking , oh it will just be day care first and possibly respite. But having spoken to an ex GP who is linked to the voluntary organisation we are supported by, I have had the honest conversation with myself. He said that the unpredictable violence was dangerous for both of us. He said that the inappropriate language of a sexual nature is a concern. (I know I hadn’t mentioned that previously). Also, the paranoiac behaviour, thinking that there are people in the house and that there are two people looking after him...... neither of whom are me.
    When I read posts from everyone they appear very stoic keeping going come what may and I am worried that I will look back and gave in too easily.

    Yes, he was calm, hard working man who one couldn’t imagine behaving in such a way. I suppose it’s good that they don’t remember their behaviour as the person they use to be would be mortified.
    He’s been calm all day today but this morning after breakfast he just zoned out and was totally unresponsive. He just sat in the chair and eventually went to sleep. We had been through yet another broken night.

    I have a friend whose OH went in the bins and even a draw. The bedroom carpet is beginning to smell and I think it will have to come up. I’ve watched him like a hawk the last two days. Today he actually asked what he had to do to go to the loo. I had to talk him through it.

    I think if one had an idea how long this would last I might consider holding on a while longer but I imagine it all takes time to get things organised. We drove out today and I suddenly realised that perhaps he won’t be by my side for much longer.
    Thank you for reading this and hope you have a good sleep, Hilly.x
     
  13. Maryland

    Maryland Registered User

    Mar 30, 2015
    62
    North East UK
    Hi hillyjay - I was a bit like you when the consultant recommended calming drugs but they d make a difference, first thing in a morning after he has had them, he is now in Sentralene and he is calmer,
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    hello @MoodyC
    many of us know just how difficult it is to realise and accept that it's time to look into a move into residential care

    to answer your question of when? ... it's often, if you are asking that question, that the time was probably a while ago

    I agree with your friend, unpredictibility is a key concern, especially when it involves aggression/violence of any kind ... you yourself need to be safe in your own home ... if something should happen to you, then decisions about your husband's care may be taken out of your hands

    trite, I appreciate, but you will be able to visit whenever you wish and you will never stop caring ... maybe each of you will relax a little, knowing others are there to support you both
     
  15. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    351
    Sheffield
    My OH has these temper tantrums and they can last a week or two but when he calms down he does seem to have lost more memory than before. This has been going on for over 7 years.! His memory is really bad now not only short term but also long term. Some days are better than others. He never knows what they call the shops we go in every week. He doesn’t recog
     
  16. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Thank you Shedrech, ever since he was diagnosed I have gone through phases of being overwhelmed. This is one of those times. Having to make major decisions for your other half is really hard, isn't it? But at the end of the day, neither of us are safe. I've had another episode this afternoon but luckily called a friend who 'visited' us for a cuppa. This seemed to bring OH out of the mood. Thank goodness for good friends.
     
  17. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Thank you for that, Maryland. I’d say he doesn’t need meds for temper outbursts just yet but he does get very agitated about things. Leaving home to go somewhere is like a military campaign with him counting down the minutes and working out how many minutes we have to get to the bus stop. Then the debate about which route to take and which would be quicker, whatever I say will be wrong.....When we have an appointment I’ve started to get a taxi instead of catching the bus which does keep him calmer.
    It’s good to hear your experience because, as you know, I’d equated calming meds with being doped up which, according to everyone who has replied on here, isn’t the case at all. A previous consultant we had during his earlier episodes of temper and aggression recommended Trazodon (??) if it increased in frequency. Perhaps he should have gone on it then.
     
  18. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
     
  19. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Has your husband been diagnosed with Vascular dementia which can go in ‘steps’? I keep a log of what’s been happening (and feel guilty about it!) and I notice too that he has ‘good phases and then bad. Each time though the bad seems a little worse than before.

    His short term memory is getting worse and I’ve recently noticed that his long term memories can occasionally be a bit iffy. For example, his parents had lived in the same house ever since they were married till they passed away. He told me recently when we were chatting that he couldn’t remember the layout of his parents house. (an ordinary 3 bed semi I might add, no vast mansion). His word finding is more difficult too. I’m getting good at playing 20 questions like, ‘the shop’. Ok, ...in this town? What does it sell? etc,
     
  20. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    @MoodyC I think Shedrech has made a good point in that if you’re asking yourself if it’s time, then it probably is. A friend of mine was in a very similar situation to yourself - her husband, like ours, had always been a gentle, calm man. Till dementia hit. She was in that same position as you are, debating should she, shouldn’t she and then the day came when he became violent towards her and it ended with the police being called.

    Her husband finally went into a care home much to her upset and guilt but you know what, he settled well after a while, he was happy, she enjoyed visiting him and in some ways life became better again. I know that does sound ‘trite’ but I just wanted to tell you of how things went for my friend.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.