Might well becoming a regular on this forum so thought I would say hi.

Discussion in 'Recently diagnosed and early stages of dementia' started by Max68, Aug 21, 2018.

  1. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    Hi all,,,, again.

    Question if I may. My sister went to see mum today and it was awful apparently. Mum was really aggressive and just kept saying to my sister "go away, nobody wants me" and was really nasty. She also thought everyone in the hospital was relatives of a friend of hers who died in that hospital last year. Mum has never been nasty or aggressive so it was a bit of a shock. She has been hard work this week, she has been very frustrated, tearful and upset but this was a first really. Just really confusing considering only 5 weeks ago whilst at home yes there were bad memory issues and poor thought processing but she was still mum and you could have a decent conversation. Just wondering if this is still the Delirium hitting hard combined with the dementia or is it the dementia progressing really quickly? She has a memory of about 30 seconds and just doesn't make sense at all and I thought dementia was slow progressing?! I know delirium can take a long time to recover, if at all, but these changes just seem to be happening so quickly. Thoughts appreciated.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,728
    Yorkshire
    hi @Max68
    it may well be the delirium … and I wonder about a UTI, which can cause sudden changes
     
  3. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    She had several tests for a UTI but all clear. They say the delirium is clearing but also say she may not go back to her baseline.

    How do people deal with the aggressive side? If she says "go away" do you and or do you stick around? So difficult,. If this was just mum I'd probably have a pop back but it's the illness talking.
     
  4. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    @Max68 My dad spent 3 weeks in hospital in January. It was awful when dad was delirious, he said awful things to us, particularly me. He didn't know who he was or where he was half the time although he was never aggressive. I would not wish that time on anyone. I decided then that it would have to be a care home.

    He was a lot better in the 3rd week and we then decided to get him home and see how things were before making any big decisions. Anyway dad has improved so much that I am amazed. He is very good with his frame and eating well (he lost 2 stone in hospital ) he is almost back to his normal self although he can't be left at night anymore because he forgets where he is going and has trouble with switches.

    He also has a 30 second memory.
     
  5. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    Glad that got better for you, it's nice to see messages of hope. How did you deal with him in hospital when he said the awful things? If mum is obsessed with something, like the other day when she thought everyone was relatives of a long since passed friend of hers, I just kind of nod my head and change subjects, but if she is nasty with her comments and aggressive I'm not sure if you should stick around or just leave?

    It's definitely care home for mum. I knew that "before" she went into hospital but no one else seemed to think that way. She has now been classed as a fall risk though and that's the problem and I don't think home nursing would stimulate her much.

    I hope it's just the delirium that's causing the aggression but the Doctors think it's clearing. I have no idea though how they know when it has cleared when she is so confused anyway.
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    @Max68 We knew it was the delirium talking and not dad but some of it was very hurtful, I don't know how we dealt with it but we did. On the worst night we had been called back in because he couldn't breathe properly and they thought he was dying. I know that I just did not want dad to die while he was having all of these horrible thoughts, that would have been awful but he didn't die and he has no memory of the hospital so that is good especially for him.

    Dad had 3 falls in hospital, one on each ward would you believe. I can't blame the staff because dad was trying to sneak out and would choose his moment. As he was hardly able to stand up on his own because of the pneumonia he would fall over.

    He has been home for 3 months or so and has not had any falls until this morning when he (according to him) slid of the end of his bed. I found him sat on the floor unharmed it seems and his walking frame was hanging from the wardrobe doors. Dad is very tidy and decided that they looked better hanging up there.

    He seems ok at the moment and we are avoiding hospitals if we can so he is still resting on the bed with walking frame by his bed.

    The reason dad is still home and not in a care home is because he has a terminal cancer and was not expected to last too much longer but I think he is going for the record now.
     
  7. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    My thoughts with you it's such a tough journey. Your dad beat mum by 3-2 on the hospital falls although she is still there so still time to score an injury time winner!! As you say you can't blame the staff. Problem is they are just "babysitting" mum now until we can find a place for her. In this day and age I suspect dementia training will become more important in hospitals.

    Mum wasn't as aggressive today but still thinks she is leaving every two minutes. Today by all accounts she played a round of golf, did the ironing, cooking, dusting and hoovering and had been at it since 7am and was fed up because she wanted to go home. I think she thinks she is working there now and thought it was the end if her shift. Don't know whether to laugh or cry!!
     
  8. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    Well out of the blue mum was assesses by a care home on Tuesday and accepted her and by Wednesday lunch time she was there. Lovely place with so far anyway wonderful staff. Her room could be more spacious but it's the care that counts and that may benefit her as the communal rooms are really nice and I am sure she will find someone to chat too. She is agitated at times and upset but apparently that gets worse when my sister and I go which is hard to know but at the same time I am happy she seems better when we are not there. Very confused and seems oblivious that she has been in hospital. Hardest moments though are the moments of clarity when she tells me her brain isn't working and she is scared, that's just awful. Dad still getting grief as he hasn't visited, poor bloke has been dead for 20 years and still getting a flea in the ear!!! She is safe and cared for though and that's a massive weight of our minds.

    Thank you everyone for all the help and advice. Lots to do still with all of mum's affairs including what we do with the house but at least she is out of hospital and hopefully she can thrive in a little community.
     
  9. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    Great news that she she was assessed and is now in a care home and seems to be getting good care there. She may well become less agitated as she settles into the routines there and it becomes familiar. It is a far better environment than a hospital, the carers will have time for her and will understand her needs, unlike the hospital.

    I was surprised that the bedrooms are fairly small but my mother spends no time in there apart from when she's asleep, the rest of the time she likes being amongst company. The staff try to get the residents into communal areas unless they are very unwell or reluctant - but they don't have to do any persuasion with my mother!
     
  10. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    Hi Guys it's me again!!!! Some advice if I may. I know it's really early days with mum in this new care home and it's very new to all of us but so far we aren't at all happy with the situation and we don't know what to do.

    We have visited mum every day and she is absolutely terrified of being where she is, losing her mind (she says she is scared) and wants to go home which we know is impossible as much as we would love to just take her home.

    Firstly she seems far to "bright" for the other residents there. We know mum will end up deteriorating like that at some stage but most residents just are asleep in a chair and mum doesn't have anyone to talk to even though the conversation wouldn't make much sense!

    Then we are not sure how often mum is getting cared for. She was in the same clothes two days on the trot and we have no idea if they change her underwear or help her care wise after she has visited the bathroom. It doesn't look like she has had a shower or bath since she arrived and her toiletries bag we took her is in the same place that we placed it and her toothbrush was dry.

    A friend of mine took her to the bathroom yesterday and changed bathrooms because there was some excrement on the floor. She didn't mention this to me immediately or I would have said something.

    Yet we don't know the in's and out's of care homes and as mum has only been there three days we don't want to start complaining. We have some forms to fill in and one of them is a care plan so maybe they are waiting for us to complete that for her "preferences" so to speak but I am not sure if when a resident is asked if they want a wash or a change of clothes and the resident refuses the home will do it anyway or not and I can't abide the thought of mum not being given a regular bathe and hair wash and being checked for possible soiling as that what I thought, maybe naively, a dementia care home did anyway without asking.

    My sister wants to move her somewhere else already but are they all the same, a bit more laid back than a hospital? Half the problem is mum obviously is not accepting the situation as she still thinks she can go home and look after herself but how can you reason with dementia?

    It's a real issue and I know the obvious thing is to talk to the care home but we don't want to come across as moaning three days in and also as my sister said they will only tell you what you want to hear anyway!!! But at the moment we are horrified and feel dreadful because we are the ones that put her there.

    Love to have thoughts and experiences of others on how they dealt with things they weren't happy with when their loved ones entered a home.
     
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,915
    Suffolk
    I’m surprised you are seeing her already. Carehomes I dealt with advised no visiting for a fortnight at least. That gives the person time to settle into the home, and not look for you so often. They will realise that they must depend on the staff to help them, instead of the family.
    A good trick is to go in sometime before a meal, so you can slip away whilst the meal is being served.
    Have a word with the manager and see what they advise. Plus mention the no washing etc.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,862
    Female
    South coast
    Was she resistant to washing and changing clothes before she moved in there?
    Its only been a few days, the staff probably dont want to push it at this stage. Do mention this to the manager, but in all honesty you cant really tell what a care home is like for a couple of months (unless its really bad, and this one doesnt sound like that)
    I agree with @Spamar - its actually better for them if you dont visit for a while. You have already been told that visiting makes her more unsettled, so its best to leave it for a while. It sounds awful (and counter-intuitive) but it reminds me of when daughter started at uni. She was advised there not to go home for the first term in order to adjust to living there. She didnt, but she said that some people went home every weekend and that they were the ones who never adapted to life at uni and dropped out.
     
  13. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    Your mum has only been there a few days, it's way too early to be worried about whether her hair is being washed. It takes time to settle in and your mother may currently be resistant to personal care. If that is the case, they will not want to stress her further, they are likely to take it gently rather than forcing the issue. Ask the manager/a senior carer and they will tell you what's happening.

    I too initially thought my mother was 'not as bad' as the other residents, but within a few weeks I realised that actually there were quite a few around the same level as her as well as some more advanced.

    Give it some time. It is a new alien environment - for your mother and the family. And as others have suggested, it is better to visit less often so that your mother has time to settle in, adapt to the new routine, and make new relationships with the carers rather than relying on you.
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,728
    Yorkshire
    hi @Max68
    I do agree that it's early days and wonder whether family and friends might visit one at a time maybe every other day
    my experience with dad's care home was definitely not as your sister suggests ... there's nothing for the staff to gain in not being open as staff and family are all doing their best to support the resident
    I started each visit by saying hello to the staff on dad's floor, so they knew I was visiting and to catch up with any news on dad ... informally chatting helped build up good relationships so they could tell me how dad was and I felt able to ask questions, give praise and make observations without my comments being taken as 'complaints' or 'criticism'; that way the staff could explain what was happening and I understood why things were as they were ... the staff appreciated this approach and were very honest with me ... to be honest, at times they were supporting me as well as dad and I was very grateful
    for instance ... I would simply have quietly told the nearest carer that the toilet was soiled (probably a resident had popped in alone and the staff could work out who and go to check they were OK, as well as giving the bathroom a clean) ... generally, I took dad back to his own toilet, or asked a carer to help him
     
  15. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    Thanks guys. It's all very alien as you all know and it's just really difficult wondering if we have done the right thing, got the right place and all that stuff and I feel dreadful putting mum in there, but that's anywhere and it's really tough with mum looking up to us practically begging for us to take her home. Some homes we looked at said not to come for a week or two and not to visit at meal times but this one was very open and said anytime was fine and indeed my sister has actually eaten lunch with mum there so maybe it's a case of the home being less regimented than others and lets the family make decisions. We therefore might then say as a family - lets not visit every day or things like that rather than the home demanding you don't visit etc.

    We are in the process of filling out forms one a Planning Future Care Guide and my sister is completing a "About Me" form in the third person so I guess if you put in that "My name is xxxxx and I like to change my clothes every day and have a wash every day" they will probably do that. They did say when we looked that with bathing they did ask the resident and some have a bath every day, some every few days etc but I did wonder what they would do if a resident just refused all the time as you at some stage have to force the issue surely? Maybe it was because at hospital it seemed they were washing mums hair every day but to be fair at home she was struggling to wash although never looked like she needed one and was using wipes and body washing because she struggled with the stairs.

    When we looked around there were loads of staff but Friday and Saturday there didn't seem too many and I spoke to one girl and asked if mum had been okay on Thursday and she said she didn't know as she had been off with Gastroenteritis which concerned me because she was back a couple of days later and handing out the food at dinner which again I might just be picky on.

    To be fair to my sister she would probably be overly critical no matter where mum is and she admits that, it could be The Ritz with a hundred staff and a marble bathroom with a wine cellar and my sister would probably say it wasn't good enough and even if we had mum at home with 24 hour staff it still would lead to worries so I can't win!!!

    I think it is just really difficult because mum just wants to go home all the time and I can't see an end to her wanting that and it's tough because I would want to go home too if I was her!!

    I guess though it's like being the new one at a school, it's going to take time.
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    Re your last sentence. The important thing is - you're not her. Your wants and needs are absolutely not the same as hers, you are able to function in the outside world, she isn't. If you are transmitting this type of anxiety when you visit, your mother will pick up on it and it will increase her anxieties. So plaster on a smile much as you don't feel like it, and only give out positive vibes. Hopefully the rest of the family can do the same.

    My mother's care home didn't give any 'instructions' about when I should visit, but I thought it would be better to let her settle in to the CH routine and get to know the staff, so I didn't visit much in the first few weeks.

    You may have to adjust your expectations a bit. At home my mother had a bath every day, but at her CH she doesn't. It doesn't seem to bother her, she's always clean and content, and dressed in her own clothes. Carers will of course try to persuade your mother but it will take time to find what works best for her. They won't attempt to 'force the issue', that would be very upsetting for her and break her trust, and I'm sure you wouldn't want that.

    It sounds as if your mother is doing fine for her first week. I think we all have doubts whether it's the first week or later in the process, but to some extent you have to let go and trust it. It's a big learning curve.
     
  17. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    910
    #77 Rosettastone57, Jun 16, 2019
    Last edited: Jun 16, 2019
    I'm going to be blunt. Stop overthinking all of this you are getting yourself wound up over things that actually are probably not happening. Stop visiting so often when my mother-in-law went into a care home last summer we didn't visit for nearly 2 weeks. By you turning up everyday all you're doing is getting your mother to rely on you for help rather than the care staff . You're reminding her of where her home used to be the care home is her new home and all you're doing is aggravating the situation.

    Listen you're getting upset because you think your mother hasn't had a bath everyday in the care home . Well, my mother-in-law went 5 years without a bath and hair wash in her own home and the mere fact that her care home got her bathed after a week in there I thought was pretty good. My mother-in-law spent the first two nights in her home refusing to go into her own bed and sitting in a chair in the lounge she didn't change her clothes for two days because they couldn't persuade her to. Eventually my mother-in-law settled down and she soon spent time in her bed and was eventually as I've said washed and changed . You can't tell how good this home is after only 3 days and the fact that your sister thinks that your mother should be moved already is quite frankly unreasonable. That won't do anything to help your mother settle. Every time we used to visit we heard from my mother-in-law nobody was talking to her everyone was awful to her etc. Well the care home had a Facebook page ,there she was in one of the photos smiling and taking part in the activities with a nice cup of tea given to her by one of the carers. Of course in front of us she was the usual vile aggressive and unpleasant personality that we had known about for years. Of course she kept saying she wanted to go home but we just ignored it she had no sense of time by then and she thought we haven't visited for over a year although in fact we had visited only a few days ago.

    As others have said, you need to let go and let the professionals get on with it.
     
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    I had a similar situation. My mother didn't sleep, or use her room, for 3 days. She was awake and wandering around, and became so confused by lack of sleep she was hallucinating. Obviously this was very worrying, and I envisaged being asked to move her because the CH couldn't deal with her needs. On the third night, she went up to her room and slept for several hours, and things improved hugely from there on - in a few weeks, she told me she loved it there. Whether she had a bath was nowhere near the top of my list that first week!
     
  19. Max68

    Max68 Registered User

    Aug 21, 2018
    56
    Male
    Sussex
    Thanks very much all and thank you for being so blunt Rosetta ;) it's what we needed!!! You are all so right, I think we knew that anyway as hard as it is.

    I've decided not to visit today and will go less and with my sister rather than her going one day and me the next. Called the home just to let them know and they said it was better that way as mum will struggle to settle otherwise but they let the families come to that conclusion rather than "demand" it themselves.

    Apologies for overthinking, worrying about things that aren't over important and flapping!!!
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,728
    Yorkshire
    Hi @Max68
    Sounds like you've found your mum a home with sensible staff; bodes well

    and just to say all worries are important because they bother us and we need some peace of mind, so no apologies, we are here to help each other
     

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