Just need to speak to someone who understands

Discussion in 'End of life care' started by janetw2010, Oct 11, 2015.

  1. janetw2010

    janetw2010 Registered User

    May 19, 2015
    My mum has been in a Residential home for nearly 3 years. It was decided by the rest of the family (my 2 brothers and 1 sister) that this was right option for her. I wasn't happy about this but it happened anyhow. She'd had a recent history of falls.
    For 2 years she was quite happy, was forgetful and slightly confused but not too much to worry about. Since just before Christmas last year she had a quite sudden decline in her memory. Everyone insisted it was just confusion put down to old age, she is now 90. Over the last 4 to 6 months she's started to get more aggressive, shouting at myself mostly and occassionally at the staff. About 3 months ago she was assessed for Dementia but we were told it wasn't that.
    5 weeks ago she became unwell, just wanted to sleep all the time, hardly opened her eyes when awake, needed thickened drinks as kept coughing/choking and as she refused to wear her false teeth had to have mashed/pureed food. She got took into hospital and was treated for a urine infection. She stayed in hospital in bed for 4 weeks. While there we were told she did have Dementia!! We were then told she needed nursing care and we had to find her a place in another home.
    She has been there a week now and isn't settling very well, isn't eating much and I am really finding it hard to know what to do or what to say to her. I have visited her everyday for last 3 years since she went into the home and it is me who she seems to display her worst behaviour to. Yesterday she shouted all afternoon and wouldn't believe any answers to anything she asked me. She was adamant I don't go to see her, that she doesn't live there, that she's had no food, that she hasn't been in bed for weeks, that she doesn't need her teeth or her glasses!!!
    Has anyone else experienced behaviour like this just for them, not anyone else in the family or anyone else that visits???
    I would be grateful of any help, comments, advice or suggestions.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Janet

    Please stop visiting every day. There is absolutely no need. Your mother is being well looked after and you need some life and some rest for yourself.

    I used to visit my husband on alternate days and he was fine. The home would phone me if there was anything to worry about and I`m sure your mother`s care home would do the same for you.

    If your mum has had an infection she probably is still being affected by the antibiotics, even if she has finished the course. The fact she has suffered an infection and has been in hospital can increase her confusion and affect her appetite.

    Please give yourself a break.
  3. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Janet,

    My mum was in residential dementia but her moods were changing drastically, to the point we were served notice. She has been in nursing dementia almost 3 months and really is not settling, she is only eating a few mouthfuls, although her fluid intake is good. She will not take her medication at all.

    We used to visit her at the previous home every day but now she is in nursing we have cut back to 3 times a week as there are more staff to cope, also the activity team do things with them a lot more, so we have had to learn to take a step back because when we do go our visits can be very upsetting with the names she calls us and wants to live with us.

    I know it's easier said than done to cut back you visits but she really will be fine as they have no concept of time. Mum's CPN said if we did not go for a month she would not know that.
  4. janetw2010

    janetw2010 Registered User

    May 19, 2015
    I appreciate ur comments but I think I'd struggle to take that step back and I know Mam doesn't know that I go everyday. The rest of the family only see her once a week or once a fortnighy and don't think twice about holidays away. We were away for a fortnight and when we mentioned unpacking when we'd just got back Mam asked if we were going away.
    I'd feel guilty and feel I was letting her down as we went when she was well and in residential care so I'd feel I was giving up on her now. I just think of her being in there and nobody being with her. The care home doesn't seem to have enough staff and the residents are often shouting/crying out due to the range of their conditions and I know Mam does too and it's hard to bear
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    I agree either you, it is hard to bear. But it's what happens to many dementia patients. It's not your mum, it's the illness. Just keep that in you mind. I agree with whoever said don't go every day. There is absolutely no need.
    One of the reasons you are getting shouted at is because you are seen as main carer, and it's the main carer that cops it! So not visiting every day would lessen that aspect. Why not start by missing the days others come? She would still have at least one daily visitor.
  6. janetw2010

    janetw2010 Registered User

    May 19, 2015
    Anyone else that visits Mam go in afternoon but I go now around tea time to help give her her tea and I go on a Saturday as rest of family like having the weekend off!! It was so much different when I could take her out as she always loved being outside but now she's in bed that can't be achieved!!
    I keep telling myself it's the illness making her like she is but she gets so frustrated as doesn't understand a thing. A few people have said I get it all because I'm the closest to her.
    Just help but think I'd be giving up on her if I didn't go and I know I'd feel guilty and not enjoy what I was doing but I know I am going to have to try as it isn't doing me any good. I am so lucky I have a very understanding husband. He comes most days to see her too.
  7. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Janet I know it will feel very odd not going but you will get used to it.
    Try dropping 2 visits a week to start with & give yourself a few weeks to adjust.
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    If you know you will struggle with enjoying any time you would have if you did not visit then continue to go but if your Mum decides to have a go at you and it continues for a while, just stand up, say goodbye you have to go now and walk away.

    if your Mum continues to rant then the staff can listen to her until she stops. They know it is the disease as you do but they are not going to be upset by it and can deal with it far better than we can as a relative.

    I go everyday to see my husband but do have the odd day off. I no longer refuse invitations because I have to go to the nursing home.
  9. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Janet I have just on another thread commented how horrible my mother had been . She is in a nursing home. For the first 6 or 7 months I visited every day sometimes twice or three times . Mum is in a nursing home 12 mins from me. Mum has been in care about 18 months now
    After a verbal attack turned physical the nursing home recommended I start a holiday I was about to have three days early. I did.
    She rang me and abused me whilst I was overseas. Anyhoo when I came back I reduced my visits to 3 times a week and then two and I have just had my second week of 1 week between visits . The reason for the extended time is that I am going overseas soon for six weeks not tell mum.
    The upshot is mum is lovely towards me chatty and we even have a laugh and a giggle (though I am not always sure why) and it is nice. As Spamar said you are the closest so you are the butt of her anger.
    I have a preference to see mum more often but if me visiting her less means she gets pleasure out of my visit then that is more important.
    Less visits - calmer happier mum towards me (still gets angry toward staff)
    More visits - agitated angry abusive mum towards everyone .
  10. janetw2010

    janetw2010 Registered User

    May 19, 2015
    Thank you for all your posts. I will seriously have to try to reduce my time with her and maybe as the last post suggested my visits may return to be happier ones.
    The thing is I never know what to expect when I go as everyday is different. Saturday was a really bad day but on Sunday it was totally different and she was so much calmer.
    Last night again she wasn't too happy but it's different things that appear to set her off. She couldn't understand last night that it was nearly bedtime as as she said she'd been in bed all day so was confused as to why she now had to settle down for the night. She had no recollection of having any meals so convinced herself she was hungry.
    It just seems to be whatever is in her head at the time and she blows it into a major issue.
    It's just so hard seeing her now as she has lost the ''sparkle'' she always had and it just isn't her any more. It's like I'm talking to a stranger sometimes!
  11. canary

    canary Registered User

    Feb 25, 2014
    South coast
    If you are going in the afternoon/evening to help with tea I am wondering whether she is sundowning and this is why she is agitated and confused. I always visit mum in the mornings and on the odd days when I have visited in the afternoon I have noticed that it gets to about 4:30pm and she is beginning to lose it and getting worked up. I have also noticed half of the other residents getting agitated, wailing and shouting. One of the carers told me it was always like that at that time of the day. You could try visiting in the morning and see if that helps.
  12. janetw2010

    janetw2010 Registered User

    May 19, 2015
    I believe that she was been sundowning for a while and as we visit in afternoons/evenings we see this change in her behaviour much more than others. Unfortunately we work so visiting through the week in the mornings isn't an option and evenings fits in best for us as I go straight from work to see her. My husband walks up later as she is only 10 mins walk away rather than a 20 minute car journey. Mornings are a time that staff may have activities arranged too although nothing has happened in the 10 days she's been there
  13. Rheme

    Rheme Registered User

    Nov 23, 2013

    Is your mum in her room all day?

    Does she have any sensory stimulation in her room to act as a distraction e.g. twinkling lights, music, radio, lava lamp, pictures on the walls, etc.?

    Would/does you mum enjoy her arms and legs being massaged with moisturiser or would she enjoy being read to. I heard on radio 4 recently that poetry is a great help with dementia (apparantely it is the rhythm of the poems which does the trick). I have just bought mum a book of poems by Pam Ayres (should arrive tomorrow) and hopefully we will both get a lot of enjoyment from it.

    Like you I visit my mum every day, in the evenings as I work also. I am one of five children and the remaining four struggle to visit mum at all. Mum is in the late stages of dementia and I am the only one in the family who mum knows.

    Mum has and sometimes still does present with challenging behaviour. She cannot talk now but shouts and calls out during her episodes. Thankfully they are not as bad or as frequent as they used to be and we with the help of a psychiatrist identified that they were at there worse when she was suffering from UTI's.

    I really feel for mum as she cannot stand now let alone walk, she is blind, cannot talk and has a multitude of health challenges including dementia and breast cancer and dad passed away nearly two years ago. Whilst at the time mum understood dad had passed away she now cannot remember that so I talk to her about him as though he is still alive - she clearly doesn't recall when the last time she saw him was.

    I cannot imagine how frightening this must all be for her and personally it has been a privilege to look after her (it also keeps the nursing home on their toes as they know I will be turning up).

    It is important that you don't overdo things and look after yourself (easier said than done) as without your health you will struggle to cope with the demands of looking after your mum. Do try and make some time for yourself.
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    That is such a lovely post Rheme x you are amazing

    I was going to suggest some kind of gentle massage, it did calm my Mum down quite a lot, just gentle physical contact with a lovely lavender hand cream maybe.

    She might be hungry if she is only picking at her meals - does she have anything that she really enjoys - it doesn't matter if she has or hasn't eaten if she is saying she is hungry then maybe take in a yoghurt or some grapes to eat together.

    She might be scared or bored - if she is not having any stimulation during the day then she isn't going to have any sense of time passing at all. Cutting visits out may not be the right option - she will have even less stimulation - even ranting is at least responding!! That is what we used to think anyway. If you feel it would be an option perhaps you could have shorter visits and maybe you could take something different each time - hand massage, some old photos with some childhood memories, an object that she loved from her home, a book to read or a picture book of old london or somewhere she recognises, a piece of music she enjoyed (my mum loved a little sing song from time to time), - just a visit with a purpose.

    just a few thoughts - please feel free to ignore, it's difficult long distance over a virtual forum but thinking of you and wishing you good luck whatever you decide xx
  15. janetw2010

    janetw2010 Registered User

    May 19, 2015

    Thank you for all your advice. I agree I cannot imagine what my mum is thinking or feeling as everything is so alien to her and she cannot understand where she is or why she's there. She thinks if she wants to she can just get out of bed and walk around but she had been in bed since she went into hospital and in the 10 days she has been at her new home she has only been out of bed and out of her room once into a recliner chair as she has to be hoisted in/out and screams when they do this as she doesn't like it. She barely opens her eyes for more than a few minutes at a time and as she doesn't do this regularly and refuses to wear her glasses she can hardly focus.

    I take her mousses, fruit, jellies but she often refuses these but I keep trying.
    She has music on in the room but she says she doesn't want it on but the staff have it on for her to listen to and it drowns out the noises of other residents which she may find disturbing. The man over the corridor has his TV on very load but she says she can't hear it but her hearing is okay when we talk to her.

    Really to be honest I'm at a loss and just keep trying different things each time she is unsettled, some work, some don't!!
  16. janetw2010

    janetw2010 Registered User

    May 19, 2015
    Thank you for taking time to reply.

    As I have just replied to the previous post. I keep trying things to help settle Mum, some things work, some things don't!! But I will keep trying and hopefully my visits will improve as she becomes more accustomed with her surroundings but who knows.....
  17. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Have you tried massaging her hands? That can help to relax people.
  18. janetw2010

    janetw2010 Registered User

    May 19, 2015
    Thank you for your reply.

    As I have just replied to the previous post I am trying different things and hopefully some will work and she'll settle and become more accustomed to her surroundings but who knows.

    The photo/memories would be a good idea if she would only open her eyes long enough to look at any. We talk about memories but most of the time she just wants to doze or if she is agitated she doesn't believe anything I say to her!!
  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    awww I'm so sorry I really do feel for you x
    just one thing - you said that the home put music on in her room but she doesn't like it. I've seen this many times in care homes and I have to admit I really dislike constant music so I hope no-one ever does it to me. If she really doesn't like it do tell the care home to turn it off :)

    take care of yourself and I really do keep fingers crossed that she will settle soon and you will find some peace x
  20. Essie

    Essie Registered User

    Feb 11, 2015
    I do feel for you Janet, and your poor Mum of course. I don't think there is much worse than seeing someone we love suffer and not be able to make it better.

    I'm not going to say cut down on your visits as I visited my Mum every day and I would not have wanted to go less than that, stick with what suits you. If Mum does get agitated maybe just go outside for a walk and then go back after 5 mins, chances are Mum will have forgotten whatever it was that was wrong and you can start again.

    In addition I would say try not to always 'fix everything' - it is such a strong urge, to try and make everything 'right' but your Mum is probably exhausted, confused, upset.... it doesn't really matter if she doesn't remember how long she was in hospital for or if she disagrees she needs glasses, or even teeth! :) Concentrate on the 'here and now' "it's lovely to see you Mum/are you comfy/your hair looks nice..." it might sound shallow but just nice, easy stuff, no pressure, no 'right or wrong'.

    And yes, I too would ditch the 'muzak' as I hate the modern choice of music as background to everything, what's wrong with quiet and just hearing what's going on around, the sounds of the day, cleaners in the morning, lunch trolley, tea time, etc might settle Mum more than constant tunes and if she has said she doesn't like it that should be reason enough for staff to turn it off...

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