1. JJ62

    JJ62 New member

    Nov 9, 2019
    8
    New to this sort of thing, but here goes. Caring for Mum who has vascular dementia and alzheimers ( dad died 3 1\2 years ago). Has anyone else had experience of fear and anxiety to the extent of not having the heating on in case it sets fire to curtains etc, flashing lights from smoke alarm/burglar alarm. Mum doesn't cook at all, I do it all for her. She is frightened, scared and feels so alone. The last month has been so bad for her and me. I have had her at my house for a few days but am so terrified she will fall down the stairs, and she just keeps saying take me home. When she gets home she gets hysterical, we had a crisis last week which is another story but it resulted in an ambulance to hospital... I took the decision to put her in respite for her own safety. I don't like it and feel so dreadful but it is impossible for me to be with Mum 24 hours a day. Does the fear of being alone and fear of fire get better or is this the way it will be now.
     
  2. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    145
    Hi my situation is similar to yours unfortunately there seems to be a time when they dont want to stay by themselves this is what has happened to my dad this week was okish with my leaving i had cameras door sensor carers coming in at 10 am but this last week he went wandering at 3 am when i was at home and again the following night ive now had to move temporarily in with him im also at my wits end i lived with him for months previous from April till aug this yr as he scalded hes leg tgen finally went home ok for a few months with him packing hes bags saying he wants to go home etc ive tried him at my house months ago he was up 10 times a night asking what he dojng there aggressive etc so i put a stop on it now considering him living with me or assisted living as a last resort him having to go into home something ive saod would never ever do
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,179
    Nottinghamshire
    Welcome to Dementia Talking Point @JJ62

    In my experience, when PWD get this anxious it’s time to consider full time care. You certainly shouldn’t be feeling guilty about your mum being in respite. She is no longer safe at home as you have realised. Is there any way the respite could be made permanent? Your poor mum is obviously very vulnerable now and I’m sorry to say it is unlikely to get better.

    You have done the best thing for your mum. It’s impossible for one person to cope with this level of confusion and anxiety and hopefully you will see an improvement in her mental state as she realises she is safe in the carehome.
     
  4. JJ62

    JJ62 New member

    Nov 9, 2019
    8
    Thank you for your reply. I know that she is safe at the moment but she doesn't want to be there. What I am struggling with is I can have a rational conversation with her and she seems ok, she doesn't rembember the conversation and we then have that same conversation over and over again (typical of the condition I know). She is still able to wash and dress herself but she just sits in a chair waiting for me to arrive and is in a state of anxiety. I always said I would never put Mum in a home but I feel there is no other option available as her safety and well being are the priority. There is a possibility that her stay can be made permanent.
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    912
    Male
    North West
    I'm going through the same thing at the moment. I placed mum into care on Tuesday and I had lots of concerns that she'd be ok and settle.

    Before mum went into care she would hide from other family members when they visited. She would have very high anxiety levels when on her own as I have to go to work. She was eventually getting into a state when I wasn't here and started to wander wanting to go home to a place that no longer exists. She wasn't eating anymore, couldn't put the TV on anymore and would just sit staring out of the window with no one here to reassure her when I was working. Eventually she started to pack plastic bags with clothes and other odd items and then kept on trying to get home until one day I got a call mum had been found five miles away from home. Things had started to be more and more problematic, even when I was here with her in the end she woud get agitated and try to leave and go 'home' sometimes at night, but in the end this couldn't go on even though I love my mum very much.

    I thought mum could wash and dress herself, but now mum has gone into care the reality is quite stark.On her own she wasn't coping anymore and I found numerous items of clothing hidden away because she just didn't know what to do with them anymore. Same with washing, unless you are with them you can't be sure they have. And eating was a nightmare when I was at work, she woud say she has warmed her meal up but when I got home it was all still in the fridge, she had gone all day surving on chocolate and cake -if she even remembered that.

    The worst part of it was her anxiety, she was really struggling alone and I just couldn't be here with her 24/7 to alleviate that unfortunately.

    Mum is now in a CH and I have signed for potential to be a permanent placement for her. She is so much better. She does have moments of 'home' but they pass and she moves on to something else far more important in her world. Even though she is in care, I have to say she is far more relaxed, content and happy. It is hard and I am still getting used to it....
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,127
    Toronto, Canada
    @JJ62 the impulse to go "home" will come and go. It might illuminate things for you if you ask where "home" is. When I asked my mother that, she gave me the address of the house where she had been living with her parents in 1950. That's probably similar to what your mother is going through. She is most likely remembering another home, one from long ago, where she felt safe. This is very common in dementia patients. They realize that something is wrong and they want to get back to somewhere (really, somewhen) where the world made sense.

    I think putting her into respite for now is the right decision, and to me it sounds like it is time to start thinking about a care home.

    Nobody wants to do it and the guilt follows us around, even though the alternative is to leave our loved one in all sorts of dangers.

    Eventually, your mother will get calmer as the disease progresses. Not very nice, I know. but there will be calmer waters ahead.
     
  7. Maggie

    Maggie Registered User

    Oct 11, 2003
    72
    Female
    Gibraltar/England london Now
    When my mother was at the stage of wanting to “ Go home”
    My mother was not Diagnosed.
    I was clueless about Dementia as 17 years ago there was not so much Awareness as there is now.

    my father had passed away .
    Mum wanted to go back abroad to Gibraltar.
    I had to bring my mother back.
    My mother needed me 27/4

    her Anxiety was Chronic if I was not in the same room as her .
    Hindsight .
    I would tell myself don’t feel guilty about putting mum in respite or full time care home.
    Make sure it’s a dementia Specialist & staff our trained in dementia.
     
  8. Bedllington

    Bedllington Registered User

    Jul 22, 2018
    16
    My mums moved into a care home 3 weeks ago. She pleads with me to go home and its heartbreaking. As ive been tidying up at her house, she has hidden things all the place. She couldnt cook, use her washing machine, shower or turn the tv channel over. Its the most cruel disease, and i feel like im grieving for my beautiful mum even though she's still here. I break down in tears every day and wake up in the night thinking about her. I know she is struggling to accept her new normal, as i am. I just hope we both manage to adjust. So sad
     
  9. Champers

    Champers Registered User

    Jan 3, 2019
    172
    #9 Champers, Nov 10, 2019
    Last edited: Nov 10, 2019
    This sounds like anxiety is a very typical symptom - hardly surprising I guess as the sufferer probably knows something is wrong and is scared, but they’re not quite sure what of. Because there’s no rationality in a dementia sufferer, it’s impossible to reassure them as is possible with many other illnesses.

    My mother, a lifelong bully who never had trouble being assertive in the past, started to call me in tears telling she was so frightened but she couldn’t verbalise what of. She would tell me that her heart was pounding, she felt giddy and she had a pain in her chest - all classic anxiety attack symptoms. No amount of talking to or distracting her made any difference at all. Even the kitchen sink draining slowly became a major incident which resulted in a late night hysterical phone call to me.

    This “going home” thing is even more common than I realised when my mother started saying it. She would tell everyone that she was only in her house temporarily and when they next visited, she probably wouldn’t be there. She’s now saying it whenever I visit her in the CH too.
     
  10. Maggie

    Maggie Registered User

    Oct 11, 2003
    72
    Female
    Gibraltar/England london Now
    An Admiral dementia nurse told me
    “The going home”
    Is a wanting “feeling” in wanting to feel Secure.
    Wanting comfort .
    This link from the Alzheimer’s Society explains it .

    Your right your are Grieving, it’s called
    a living grief .
    It is sad.
    I am very person centred.
    It is hard Emotionally remembering your mother how she was before the diagnose.
    I hope the care home has a good lifestyle Coordinator to do activities, hobbies that your mother may of enjoyed before the Diagnose of dementia.




    https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someone-in-dementia-care
     
  11. Chaplin

    Chaplin Registered User

    May 24, 2015
    23
    Female
    Bristol
    After spending around 3 hours with mum in CH this afternoon and trying but failing with the usual distraction techniques, to calm her and reduce her anxiety about wanting to go home, I am slightly lifted by the idea that a calmer phase will come! I see others in CH have lovely visits with family but our visits rarely end well! How long does this anxious phase last, I feel like it’s been an eternity already?
     
  12. Maggie

    Maggie Registered User

    Oct 11, 2003
    72
    Female
    Gibraltar/England london Now
    Each person with Dementia is individual and unique In how they experience the symptoms, but I've witnessed a few person at this stage.
    Can last a long time even when the person is not able to walk.
    .
    When it come to family and being emotional connected.
    It’s totally understandable to feel upset For your love one & want the Anxiety to go away.
    It can feel like there living in a loop of what ever given time in what is happening within the mind of memory .
    Seems it the “ feeling “ behind the memory That is more prominent than the actual memory
     
  13. Maggie

    Maggie Registered User

    Oct 11, 2003
    72
    Female
    Gibraltar/England london Now
    It’s Easy for me to say, as I am now not walking in your shoes anymore in what a Relative is experiencing with a love one living with dementia.

    It’s hard to Detach yourself emotionally from the Emotional connection we have for a love one.
    I found Focusing more on asking about
    “ Feeing”
    How dose it make you feel Acknowledging the feeling of the anxiety.
    Your safe & hug kiss
    Can Calm anxiety.
    It may work & it may not work.
    May be needed to be repeatedly done .
     
  14. JJ62

    JJ62 New member

    Nov 9, 2019
    8
    Visited my Mum yesterday afternoon. And cannot believe how different she is. Before I go any further let me just say I love my Mum but...she has been spoilt all her life and always got what she wanted. This time I think she has had a shock because she didn't get her own way. I think her aim was to have me 24 hours a day, I appear to have replaced my dad who was with her 24/7. The trip to the hospital was self inflicted (this has happened so many times in the last 3 years). I know she is not who she used to be and is so lonely but can people suffering this dreadful illness still be so cunning and manipulative? I am in such a quandary, my thoughts at the moment are to bring her home and have day care 3 or 4 days a week to combat the loneliness (she has been going 1 day a week for the past 9 months and enjoys it) then fetch her to my house until evening, take her home and settle her to bed. My son has said he will stay with her 2 or 3 nights to help out. Has anyone else tried this angle. My head is all over the place just now, I am so mixed up.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    912
    Male
    North West
    I don't think you can completely view your mum now as she was before dementia. Dementia itself creates changes in personality. I'm finding that mum has been fine until I visit and that familiar feeling she has with me can prompt the want to go home, but it passes after I leave. But mums connection with me is not as her son, she often thinks I'm dad or sometimes her own father, so I can see why she relates those feelings of somewhere from the past to me of 'home'.

    I have tried everything I can with mum, and over the last few weeks, and my being here continually with her in the end wasn't working anymore. The dementia does take over. I guess it depends what your mum is like and whether one person would be able to manage her at home? There is also the problem that as her dementia worsens you won't be able to leave her alone at all.
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    Yes they can.Dad is/has always be manipulative and secretive.That hasn’t changed.I think if it is part of the personality it becomes more pronounced.
     
  17. Champers

    Champers Registered User

    Jan 3, 2019
    172
    Definitely - and sadly, because the person with PWD loses their wider personality, they seem to become more egocentric and intensely focussed.
     
  18. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    121
    Female
    #18 silver'lantern, Nov 11, 2019
    Last edited: Nov 11, 2019
    [ I am in such a quandary, my thoughts at the moment are to bring her home and have day care 3 or 4 days a week to combat the loneliness (she has been going 1 day a week for the past 9 months and enjoys it) then fetch her to my house until evening, take her home and settle her to bed. My son has said he will stay with her 2 or 3 nights to help out. Has anyone else tried this angle. My head is all over the place just now, I am so mixed up.[/QUOTE]

    you need to think hard before you do this. just because she had company yesterday/3 days a week/an hour ago/daytime/evening I dont think its ever enough if they need company in the moment. Often the person doesn't have the memory to hold that someone has been with them all day. just the 'now' that they are on their own and lonely NOW. What is given is never enough. mostly as the don't retain it.
    its also to do with the overwhelming fear they often have. something is wrong but unsure what....creates fear and worry and being alone/lonely is the biggest thing they can articulate into the moment. someone being there can 'fix' the worry ......the need becomes 24/7
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    I dont talk much about my MIL (with vas dem) as I was never her main carer, but my SIL (her daughter) tried exactly the scheme that you are thinking about. She came up with a rota of family/friends who could sit with her during the day (I used to sit with her an afternoon a week when I wasnt working) and she would look after her in the evening and put her to bed. MIL also had carers coming in 3 times a day to sort out washing/dressing meds etc

    Im afraid that the scheme only lasted a couple of months.Inevitably there were times when people couldnt do it because of illness, holidays or an emergency. My own mum and OH were beginning to get problems that, with hindsight, I recognise as symptoms of dementia themselves. The biggest problem, by far, though were the evenings and night when she was on her own. She regularly phoned us up telling us that she felt so poorly, was in terrible pain and needed us RIGHT NOW!!! At other times she said that her zimmer frame had fallen over and when we went round there it was obvious that she had actually pushed it over. One evening when we were out there were 30 messages left on our answerphone!!! My BIL (daughters husband) stayed a couple of nights with her when she was really bad, but instead of re-assuring her it seemed to make matters worse and he ended up staying more and more often. Coupled with him working full-time, this was unsustainable.

    Eventually after another fall landed her up in hospital, there was no option but a care home
     
  20. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    My dad has Vascular Dementia and I have managed to get him into respite for 2weeks.Dad has had carers in 4X a day and me stopping over 4days and the odd night.He is immobile though except with a frame.It is never enough..
     

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