1. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    84
    Can I ask for some guidance. My Mum was diagnosed with vascular dementia in January but it has been a very rapid progression. She has carers 4 times a day now but can still be extremely lucid at times. There is enormous confusion as she can’t accept that her house is her home and has been returned to it numerous times by neighbours when she is leaving to ‘go home’ with a bag packed. There have been two police incidents last week, once where she phoned 999 to tell them I’d locked her in (I hadn’t) and once where she was out at 4 in the morning, just standing in her garden (I think. Social Work have offered emergency respite care with a view to long term but I’ve refused that as I don’t want her just shoved in any available care home. I’ve been looking and have found a nice one which will have availability in a few weeks, problem is I don’t know if I’m jumping the gun and acting too soon. I live 6 miles away and have no other relations, I work full time and go to see her every day which is all taking it’s toll on me.

    The guilt and uncertainty I feel about this is crippling me.
     
  2. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,491
    Female
    I don't think you are jumping the gun. No one wants to move their loved one to a care home, it seems like such a momentous decision, but it sounds as if the time has come for your mother. She is no longer safe at home, and she doesn't even know it's her home. She needs supervision 24/7 and the way to organise that is a care home.

    I moved my mother 18 months ago when she was (what sounds like) a similar stage to yours. Even as I moved her there I thought it might be a bit soon, but within weeks I realised it was absolutely the right time. It took her a few weeks to settle but she then told me she loved it there. She is no longer anxious because there is always someone there to reassure and help her. I know we commonly think of care homes as a 'last resort' but actually they can be a really positive move.

    And I know she is safe, and no longer have to worry about phone calls from neighbours who have rescued her from walking around in the dark, in the rain, with no coat and no keys. SS are unlikely to move someone to a CH until the last possible moment, so that gives you confirmation it's the right time.
     
  3. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    84
    Sirena, thank you so much for
    Sirena, thank you so much for your reply, it’s a comfort to know that your Mum has settled in well too. I get comfortable with the decision and then she’s really lucid...like her old self and then I go into this spiral of self doubt again. She’s quite feisty so although I’ve had a chat about it with her when I actually say I’ve been looking i anticipate it will be a whole different ball game. I’m sure you went through all these emotions too!
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    I dont think you are jumping the gun either. My mum moved to her care home when she too was going out and getting lost - it was the only way to keep her safe.

    It seems such a huge milestone along the way that I think we none of us think that it is the "right" time, but Im sure it is - your mum doesnt recognise that it is her home, so isnt getting the comfort of being at home and it isnt safe for her anymore. As sirena says, SS try and keep people in their own home as long as they possibly can, so if the SW says she needs to move into a care home it is well and truly time.

    My mum thrived in her care home and I think this is the experience of many people here. Mum settled in her home, put on some weight (she hadnt been eating and had become malnourished), made friends and joined in the activities. The care home was wonderful (if rather scruffy) and looked after her up to the end. It was the best thing I could have done for mum. So dont think that what you will be doing is failure and something very negative - it wont be.

    If you can cope with your mum for another few weeks it is probably best to only make one move straight into the care home of your choice, but if it becomes urgent its better to make two moves than risk her safety.
     
  5. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    971
    It is the right time ,deep down you know it's going to be the right decision. Think of it this way ,
    ..it's not when the carers are there, it's when the carers aren't there that the problems arise. Unless your mum has constant supervision the problems will always continue I'm afraid . The only way of dealing with this is as other posters have said ,24/7 supervision in a care home setting otherwise you're just lurching from one crisis to another. When my mother-in-law went into care last year straight from hospital ,the amount of pressure that my husband had felt up to then evaporated immediately . He was no longer her carer ,he was no longer worrying about the next phone call to say that something has happened to his mum . She was self-funding but to be honest it was the best decision we made for her and for us as a family
     
  6. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,491
    Female
    My mother would surprise me with sudden lucid moments too. They were few and far between unfortunately.
    I would avoid discussing it too much with her. I know it seems counter-intuitive, because of course in the past you would always talk things through with her. But dementia changes the rules, and you have to adjust to what will be best and easiest for her. Talking about it may distress her (and you), and even if she agrees one day she will change her mind the next, and/or forget the conversation. So keep it low key, and if you do talk about it, do so in entirely positive terms.

    Please let us know how you get on.
     
  7. Helly68

    Helly68 Registered User

    Mar 12, 2018
    393
    This is a very difficult situation, you have my sympathies.

    I think I concur with the above posts. My mother could still be quite lucid when she first went into a care home, and I think this helped her to settle in. I worried she had gone "too early" but actually she benefited from the routines and being safe, as she had begun to wander. She also gained from being around others - part of a community, so that although she isn't in her own home, that almost doesn't matter any more as she has lost all concept of home, except perhaps of a time before she got ill.
    I did talk to my Mum before she went in but tried to make it clear that there wasn't really another option. She visited homes with us and went during the day for trial session in the home we eventually chose and we did ask her how it was going - she seemed quite happy though she did like to moan a bit.
     
  8. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    437
    Hi @Feistywoman , I remember you talking about your mum before and thinking she sounded a lot like mine. I had very similar problems with mum calling the police and fire brigade as she couldn't get out, being convinced she wasn't in her own home etc. I'd never been able to persuade mum to have carers and I lived two trains and a bus away from her so I was on a knife edge every time the phone rang as to what new crisis was going to present itself. I found a home near me and moved mum getting on for three months ago.
    Mum is taking a while to settle but we are getting there. She certainly couldn't have coped at home much longer and I'm glad I moved her before a major crisis happened. I didn't mention it all, just said she was coming to stay near me for a bit, and then on the day fudged the whole issue of where we were going.
    Let us know how you get on.
     
  9. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60
    I am in exactly the same situation. Half the time you wouldn’t think there was anything wrong with Mum and the other half she displays many of the behaviours of dementia (diagnosed 12 years ago with vascular dementia). I live next door so I am principal carer and see this up-and-down pattern daily. She also has a 95 yo companion who sees her twice a day, hotrodding it on his electric scooter. My brother (who tries to see her most days) has been patient in my insistence that she stays at home but following a very brief incapacity of mine, which highlighted how quickly it would go to pot if I wasn’t able to continue, he has now announced that if he has to be the Bad Guy he will be and we have to arrange for the assessment by the care home we’ve selected in order for her to go in during September.

    Caring for her is trying but nothing like as bad as many on TP have to cope with - she isn’t incontinent, she eats well, she takes her tablet without trouble, she likes to get out and “see life”, she is quite malleable and has absolutely no aggression or behavioral issues. I can get a bit stressed which my brother sees but my stress has gone off the scale since he announced that we have to put her into residential care so your above comment about crippling doubt and guilt exactly mirrors my current situation. His reasoning is that if she goes in now she won’t be too far gone to adapt. I have just been next door to make sure her breakfast things are out and her nighty is on the bed and then left with her companion - they are so close and so tender towards each other that I cannot bear knowing that they are going to be torn apart in the next eight weeks.

    I too feel it may be too soon. She will be self-funding so no SS involvement - I wish someone WOULD take the decision out of our hands.

    Please let us know how you get on and good luck.
     
  10. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    Like all have said - if your gut reaction says it is the right time it is - and it sounds that way. Many care homes are truly wonderful places - I have experience of many - there are many different kinds but they are not places to be feared.
     
  11. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,491
    Female
    He is right. My mother was able to adapt because she could still make relationships with the staff and 'make it her new home'. Hopefully your mother's companion will be able to visit her in the care home - surely they will not be 'torn apart'?

    I do know how you feel - no one wants to make this decision, but in one way we are lucky we are able to, because we can ensure they get the best care. Those who depend on LA funding are often left at home way beyond the point they can cope, at least we are able to spare our relatives that fate.
     
  12. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60
    Alas they will be effectively torn apart. At the moment they spend around two hours together twice a day but the care home we have selected is four miles away and he has no transport, at almost 96 is extremely frail so will not be able to walk from the car park into the home and even if we can get him there and get him in, it won’t be every day and the environment will be very different to the privacy they enjoy now. We offered to take him to view the home to reassure him that it was lovely but he declined and after a few moments silence said “when she goes in there I’m finished” which was heartbreaking. But Mum’s needs are paramount.

    I totally accept everything you say and it will have to happen.
     
  13. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    230
    Female
    Essex
    #13 Woohoo, Aug 3, 2019
    Last edited: Aug 3, 2019
    dont know how I did that , ;) Didn’t mean to.
     
  14. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,491
    Female
    That is very sad. But as you say, your priority is your mum.
     
  15. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    84
    Thank you all so very much for your advice and kind comments. I never learn and despite several of you telling me not to...I tried to discuss it with her. Upshot is I ended up hysterical as she’s convinced she can cope on her own...she says she’ll think about it. Huge stumbling block will be that she smokes, she loves smoking and will need to be taken outside for a cig should she go into the home. She’s also
     
  16. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    84
    Sorry...signal failed half way through . She’s also been really good the past few days throwing me into the spiral of if I’m doing the right thing or not.

    I know many of you must have the same fears and concerns and I’m so grateful for your support
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    In mums care home there were several residents who smoked and there was never a problem with them them going outside for a "fag break". I dont see that it will be a stumbling block

    I thought you had found a nice place that would take her?
     
  18. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    84
    I have found a nice place @canary there will be a vacancy in a few weeks and they’d like to come and meet/assess her this week. I’ve spent my life trying to please my Mum and feel that at this will most definitely not please her. I’m making up my own objections....need to realise that no one will do the deed for me.
     
  19. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    229
    Central Scotland
    As is often stated on Talking Point, there comes a time when your PWD's NEEDS must take precedence over their WISHES. It is also a given that it is best to make the move to a Care Home in an orderly, planned fashion, rather than as a result of a crisis, emergency or accident.

    Sorry to be harsh, but you would never forgive yourself if your Mum came to some harm wandering outside or set fire to the house by leaving or dropping a lit cigarette.
     
  20. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    84
    Not harsh at all @Wifenotcarer youre talking absolute sense and I know that I need to get on with things, just know that she will find it very difficult
     

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