It's tough my Mom's condition appears to have got a lot worse in a matter of weeks...

Discussion in 'I care for a person with dementia' started by elizabeth ann, Jan 17, 2016.

  1. elizabeth ann

    elizabeth ann Registered User

    Jan 17, 2016
    We care for my Momma in her own home but are not sure how much longer this will be possible. And are faced with the awful decision and guilt around when will it be best to put her in a home?
    Momma has always been a good sleeper but now calls out in the night, often up to 6 times, not knowing why and subsequently whoever is caring for her gets very little sleep. She appears very anxious about going to the toilet 24 hours a day and no amount of gentle reassurance and support seems to help. Also she suddenly doesn't seem to know what the food is we put in front of her and is fearful she may not like it even though we never force her to eat anything and go to great trouble to give small tasty portions of nutritious food she's always liked.She no longer watches tv or seems to get pleasure from anything much as she's 100% wrapped up in her anxiety about when to go to the loo. All in all its exhausting and emotionally draining and so sad. Any advice….?
  2. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    I think that often when you start to ask the question you've reached the point when care at home is no longer sustainable.Others may disagree.You could probably arrange help for during the day through social services but they won't fund overnight care so that would be down to your mum to fund.Lack of sleep is often the straw that breaks the back of the carer.Guilt is normal but completely unnecessary,you have done your best and will continue to do so,care at home isn't always best in the long run,it takes courage to face up to this.
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    It might be worth a call to your continence service (your NHS trust will have details) our continence nurses are very good and have a lot of good advice as well as providing pads etc. They are the experts and it sounds as though some input might be helpful for you all at the moment.

    Sometimes tastes change considerably, my Ma became very fickle and things she had always liked some days she just didn't or didn't want it and we managed to get some Ensure and Ensure Plus from the GP - they are fortified drinks available on prescription and very easy to get 300 calories in quite quickly. Just tell the GP your mum isn't eating and ask for a prescription for a mixed tray of ensure (usually 24) that way you will get a lot of different flavours and then you can just ask for her favourites after that - when you put the prescription in explain to the pharmacist that you want as many different ones as poss - our pharmacy is fantastic. They are a manageable size so not off putting so they may be helpful

    Might be worth trying 2 paracetamol just before bedtime - they don't interfere with meds generally and lots of people find that they help people settle for the night.

    I hope some of these work and give your mum some peace.

    Have you had a carers assessment to give you some free sitting hours to make sure you get a break? If not give social services a ring and ask for one. You do need a break to recharge your batteries but i'm sure you know that x
  4. elizabeth ann

    elizabeth ann Registered User

    Jan 17, 2016
    Thank you

    Fizzie great to know others out there understand the difficulties

  5. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    Are you sure she doesnt have a uti or some other physical reason why she is thinking about the toilet constantly? If you haven't already, it couldn't hurt to talk to her gp just in case.
  6. elizabeth ann

    elizabeth ann Registered User

    Jan 17, 2016

    We will check for a U infection again
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    somebody mentioned the other day that you can buy tena strips to put inside the pads which give indication of UTI - they said they are expensive but worth it. Just a thought as I know how hard we struggled with urine samples!!!!!
  8. elizabeth ann

    elizabeth ann Registered User

    Jan 17, 2016
    mom moving into a nursing home tomorrow…… i feel so concerned and guilty

    After several dreadful weeks with Mom suffering from extreme anxiety at night waking up to 18 times a night we've arranged for her to go into the local nursing home for 'as long as is needed' whilst they try and settle her and sort out her meds.
    We are fortunate enough to have a carer at moms house but as they can't be up 24/7 we have recently had to arrange night nurses or my brother or i to watch over her all night as she wants to get up for the toilet but hasn't the strength to do it on her own any more and we really want to avoid another fall and hospitalisation. ( in the past we've had 2 hospital stays after falls!).

    It is just SO emotional - i know she will be so frightened going in as she often says 'I'm so lucky to be in my own home' and so we feel so guilty in a way…..yet can't really carry on lurching from day to day living off our nerves.

    any advice from those who have been here?
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    My only advice is to sel it as a "holiday at doctors orders". That's what I did. Everytime you see her smile and ask if she is enjoying her holiday. My mum was very good at ready body language.

    After 3 weeks my mum was convinced she was in a hotel only for retired people, that had nurses. That is what a good care home should be!

    Best of luck. You can go back to being a daughter full time instead of part time. Do the nice things with her. Talk and laugh as much as possible. We ch movies. My mum loves musicals and they make her very happy. Let the carers do the personal care. You can do what they cannot - be her family. That can neverbe taken away no matter where she lives.
    Love quilty
  10. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Constantly disturbed nights was the main reason we finally decided that FIL would have to go into a CH. At the time my OH was working long hours in a demanding job, and our two daughters were coming up to GCSEs and A levels - we could no longer cope with him wandering about at night, banging and shouting, trying to get out of the front door at 2 am and coming into our bedrooms to see who was sleeping in 'his' house.

    Though TBH even if nobody in the house is in a job or studying, caring full time can often be utterly exhausting, and IMO nobody in this role who is being constantly deprived of sleep should ever feel bad or guilty for thinking that enough is enough.
  11. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Elizabeth Ann, I am sorry you are so upset and feeling guilty. I know this is a big change and that the move to a care home/nursing home is not one that anyone takes likely, or wants to happen.

    I agree with others here that as far as you are able, stay calm and tell your mother that she is there on the doctor's orders, while she recovers/gets better/has her medications straightened out/whatever you think she is most likely to accept. Come up with one simple statement and just repeat it over and over. If she is upset and asks, why am I here? I don't understand? I want to go home, try reassuring her and then distracting her and changing the subject. When my mother moved into her care home, and was distressed at the beginning, we came up with: "I know you are unhappy and nobody wanted it to be like this. The doctor says you need to stay here until you are better. I'm sorry you are upset; however, this is the way it is just for now" and then we'd change the subject and distract her (with food, but use tea or coffee or food or an activity or whatever works).

    Please don't assume that she will be frightened and miserable; be careful that you are not projecting. It's easy to worry about the person in the care home being alone and unhappy but this is usually not the case. She will have the benefit of trained staff who are available 24/7 and who work on shifts, so they are not exhausted. As others have said, you will be able to concentrate on the jobs that only you can do. Don't think you are a failure or sell yourself short.

    I also want to say that it is possible that your mother's anxiety and distress will eventually lessen in the nursing home, as she comes to understand she is safe and has adjusted to her new surroundings. Please be patient as it generally takes at least a couple of weeks and probably up to a couple of months, to transition. My mother went from a state of constant anxiety and panic and no sleep at home, to no anxiety and no panic attacks and much healthier in the care home, in a matter of weeks. She is so much better off in the care home than she was in her own home (although that was with no services).

    Work with the staff there to find out what the daily routine is like and how best to get updates. Make sure you talk to the staff to hear how they feel your mother is doing. People with dementia, who are getting used to a new setting, are not able to accurately report how things are.

    Give yourself time to adjust, as well. At my mother's nursing home, there are two staff members in particular I tend to talk to and get updates from. As I've developed a working relationship with them it's gotten easier to get information and be more comfortable with how things work.

    You are still very much needed by your mother, it's just that things will shift a bit. Try to be patient with yourself as it's a learning curve.

    Sending you good wishes for this difficult time.
  12. minxie

    minxie Registered User

    Dec 29, 2014
    Excellent replie!!

    Yes I agree, it is very daunting to start with but once you have taken the first step all falls in to place and you will all feel better for it.
    Best solution all round as you can give quality time to your loved one and all the stress is taken away.
    Please do it !!!!!!!!!!! Take care and good luck xx
  13. elizabeth ann

    elizabeth ann Registered User

    Jan 17, 2016
    thanks for your helpful words…. BUT first night traumas

    it was just great to read all your helpful words and advice.
    unfortunately after all the upheaval of getting mum in the home - she was left alone for too long it appears on the first night - aggravated by buzzers everywhere from other residents and supper later than usual , she fell later around 11pm on her first night and suffered lots of bruising and a large gash on her leg. i know they can't watch everyone every minute but it was her first night and we'd hoped mom would have had that extra bit of care. when it doesn't begin to match what we were offering at home we begin to wonder whether we may have to take her home again and juggle full time live in carers with night nurses. i feel SO despondent and depressed at the though and yet i know we are better positioned than many.
    i just want to sleep and not wake up to more of this constant worry….

  14. Tutornan

    Tutornan Registered User

    Oct 15, 2015
    I know how you feel

    I too, have reached that point. Mum fell and broke her hip just before Christmas and although is home the confusion has grown so much. She doesn't recognise her home, her bedroom, can't use the phone (but somehow manages to phone me?), and is generally very confused. Have been to look at a care home that specialises in dementia and it was lovely. They didn't know I was going (with a friend whose mum is in there) and we're just so nice and helpful showing me around too. My problem is how do I get her in there. Found a note she had written in book that she wanted help and me. Made me very sad. Only me to look after her with her carers that come in three times a day! Have some good supportive friends and her grandson goes in once a week to do her meds and tea but it's always me that she ends up wanting. I don't mind that but worry that she needs more help now. I hate this disease
  15. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP :)

    Could you tell her the doctors want her to go to build her strength up? Sometimes they listen to people in authority.

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