1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    #1 VonVee, Jan 30, 2016
    Last edited: Jan 30, 2016
    Dammed if you do & dammed if you don't!

    I really don't know what to do anymore, I'm trying to do the right thing for my mum, but it's just not enough anymore.

    20 minutes ago I spent an hour cleaning poop off everything including my mother who was covered head to toe in it, the walls the floor, the clothes, the shower and mats everything was covered, I'm not kidding and oh my god the smell

    On Thursday she moved in to mine, she was in council owned sheltered ACCOM but it wasn't working out, she was going missing a lot, I was getting phone calls at 3.30 am from lifeline informing me she's gone missing, then a mad dash into Poole quay at 4am to try and find my mum, who I found at 4.27am in her nighty and dressing gown 2 days before New Year's Eve, totally lights on no one home, I was going back and forward all times of the day and night like a headless chicken since end of November 2014, I had enough, and so has mum, she was begging me to take her in, telling me she wanted to live with me as she wasn't doing very well on her own, and she wanted to live with her daughter.

    The thing is she was telling the SW's the opposite that she wanted to stay in her home, but what they don't understand is home to mum is my childhood home and not the SH flat, so now I have the SW's on my back thinking I have forced my mother into my home, when I haven't, they say she's a vulnerable adult and this is suspicious.

    Earlier on she was saying how happy she was and that it wasn't as bad as she thought, and she wants to be with us, then tonight she said she hated it and wanted to go home, while sitting in a load of poop in her pants.

    I looked into homes and I was knocked down pretty quickly by mum's SW because every care home I mentioned it was either that's not suitable or that home won't have the restraints needed, and she mentioned a care home in Swanage, which is 30 miles away, then 24/7 warden controlled was looked into but it didn't arise as it takes too long don't it, so something needed to be done, and mum kept telling me she wanted to live with me, so on the 1st Jan I gave 4 weeks notice on the flat, for the last two or three weeks me and my husband have worked like dogs trying to get our house ready for mum, and tonight she said she hates it and never wanted to be here.

    I am so bloody miserable, I feel so alone, i really hate this, I feel my life isn't my own anymore, I really don't know what to do anymore, if I tell all this to the SW's they will love this and it will be like I told you so etc etc.

    But Tomorrow is a different day and she'll be different again, very changeable.
     
  2. Tammy5

    Tammy5 Registered User

    Jan 29, 2016
    148
    Surrey
    I wish i could offer constructive advice. It sounds like we are in kind of similar situation in cleaning poop all night! My mum moved in with us just before Christmas and I had been driving to hers at lunch time bringing her back to mine with my 3 kids then Taking her home again 7pm every night more or less since we lost my dad in 2012. It's the start of the journey for us so all I can offer is our love and thoughts xx
     
  3. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,126
    eastern USA
    I'm sorry. I had a night like this, once, about 5 years ago. Is your mother in tena or depend panty, which is absorbent?

    To control poop, you might try using lactaid, because it's very likely that she is lactose intolerant if she has loose stool. Lactose isn't just in milk but in lots of products that we don't associate with milk, like jarred gravy and soup. If you are giving her tea or coffee with milk or dairy creamer in it, this too can cause loose stool.

    She is having a very bad day. It's likely that the changes in her life situation have overstimulated her. When she says she doesn't love you or hates it in your home, she doesn't really mean it. She is trying to tell you how unhappy her condition makes her.

    It is very, very hard not to take their tantrums personally, especially when they are directed at us, but that is what caregivers have to do: we can't take it personally.

    I hope fizzie or Izzy or stanley or nitram will stop by to help you figure out how to handle the SW system there. In the meantime, I wanted to send along a gentle reminder to you that you and hubby are the most caring people around your mother right now. She can't accept her condition, and she probably thus can't accept you. But you did marvelously to try to sort this out for her. Soldier on. Tomorrow's another day, and it could be a good one, you never know.
     
  4. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    CJ

    Yes she had two tens lady pads on, and they were covered in poop also!

    Your right it may be the move has unsettled her, I was expecting that, but I'm trying to keeping positive knowing I did the right thing, then this happens and I'm doubting myself.





     
  5. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Oh my god Tammy, it's exactley what I was going through, I didn't know whether I was coming or going in the end, just beside myself, I wasn't prepared for the poop tho.
    Thanks for your love and thoughts, I need some xx
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Hi there
    I think this might be part of the settling in process. It is a big change for everyone and very big change for someone who is already disoriented.
    You need some help though and I would suggest.....
    I think it would be a really good idea to contact the continence nurse on Monday first thing...you can get pads on the NHS which make life unbelievably easier in every way for both your mum and for you - trust me the difference they make is unbelievable. If they try to tell you there is a waiting list cry and tell them you are at crisis point and you desperately need help and tell them this will make the difference between mum living independently or going in to a home.

    Then contact social services and ask for a carers assessment for yourself - you are going to need breaks from 24 hour care so start to build them in now. Say it is urgent. Then ask for info on a day centre/lunch club - a couple of days in a day centre (with transport) will make a big difference to you too.

    I would also think about getting an appointment with the GP if the poopy situation continues but it might just be settling in

    I'm guessing your mum already gets attendance allowance but check she is getting the higher rate

    Have a look and find your nearest carers cafe and go to the first one you can - masses of local info but also lots of face to face support with people who understand.

    Finally have a look at this - it really really makes a difference

    http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf

    At the moment you feel very alone but you are NOT - we are all here to support you and there is lots out there but it will take a while to settle into this. So go through the little list and once you have one or two things in place you will begin to feel much better xxx
    Thinking of you xx
     
  7. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    I also have two kids, and my Dad died in November 2014, since then, it's taken over my life, it's just so hard for me, I wasn't prepared for this.
     
  8. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Hi Fizzie,

    Yes I think you may be right about the settle in, yesterday she was complaining of tummy ache so I gave her some pain killers.

    No she's not getting attendance allowance, the council told me she couldn't get it because she was getting a state pension. I've now learnt this is BS, so I'm going to a charity trust next week to see what rights I have etc and what I can get for mum.

    The SW's have it in for me at the moment, because hey think I'm forcing my mother to come and live with us, and I'm on a payment plan with the social care atm, and they keep telling me my mums a vulnerable adult and they think I'm doing something interwar the with her money and it doesn't look good for me etc etc







     
  9. Tammy5

    Tammy5 Registered User

    Jan 29, 2016
    148
    Surrey
    I also have two kids, and my Dad died in November 2014, since then, it's taken over my life, it's just so hard for me, I wasn't prepared for this.

    Looking back my dad used to say keep an eye on mums memory.... They were so routined after 60 years or marriage we didn't really see a problem to begin with. Then we thought it was shock or grief at losing dad and my brothers used to say the more I did for mum the less she would do but when some one isn't eating or drinking or washing you can't not help or step in! Little did we know what was really happening back then. My eldest is 13 and had downs and wasn't handling transitioning mum back home every night and now he struggles with her not using the right names when the go through the box of family photos every day!! The boys (10 and 6 and of course 13) go running down the stairs in the morning or into the loo to stand in loo mess!! I think I need to remove rugs next so it's easier to detol everywhere!! I love my mum and my boys so much but how many ways can we split ourselves and not sacrifice too much from either their childhood and having enough energy in the boiler!! I only joined this group last night after having another poopy evening and although awful it's good to see we aren't alone. Xxx
     
  10. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    oh dear but she should definitely be getting higher rate, age uk are very good with forms too - they will send someone round to help you sort out if you can't get it from the ocal charity. keep posting, lots of people to help out x
     
  11. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    Hi VonVee

    Truly, not every day will be as bad as this one. As the others have said, it's probably the stress and strain of the move, being in a new place, coupled with a jippy tummy.
    We have also had a day of it on the poop front. To be honest, it's been going on for 3 years and I have largely got the measure of it, but there are still times when we have an accident. Mostly at night, or when I don't respond fast enough to a request for the loo. My main concern is to clean it up in a bright and breezy - ish way, cos my Dad gets really stressed about it. Straight after, he forgets it's happened, but at the time he understandably gets upset. It was hard going at first, but I am now able to do the cleaning up with less reactions. Disposable gloves are a must!!

    I have noted with interest the pointers towards lactose intolerance in the elderly and will get some alternative milk tomorrow. It can't hurt to try it and we have exhausted all medical options.

    I know when you are frazzled, it seems like the last straw, but you will find a routine for dealing with it in a practical way. Definitely get on to the continence service re pads. We would never manage any other way.

    Keep your spirits up and don't forget that it is the dementia talking, not your Mum. My Dad used to get uppity too when we first moved in with him ( me, my brother and his partner) but he settled down once we had established a routine and he got used to having us around. Now, every night he thanks me for looking after him.

    All the best to you.

    Heidi
     
  12. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,126
    eastern USA
    If you think lactose might be the issue, try buying Lactaid milk or some other lactose free milk, but also buy a pack of lactaid tablets, so that if you discover something in the regular diet has lactose in it (which usually comes on the ingredients label as "milk solids"), you can provide a tablet or two, and this might help.

    But I also recommend highly probiotics made for seniors. I buy mine in the US at our CVS drugstore. Any probiotic should help, but the one for seniors has a good amount of the ingredients they need. Probiotics help supply the bacteria and yeast that get removed from our colons from too many drugs, particularly antibiotics. Elderly people have had an abundance of drugs, so they tend to respond well to probiotics. We had our first regular stool once my mother was on probiotics.

    She is alas failing now. Those days seem so long ago, yet they were only about 6 months. Once it starts going downhill, it goes fast.
     
  13. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    Just a quick tip to help with the poop problem. Mash potato, or white bread or marshmallows all help to bind, so it's not so free flowing.

    If you want to most people can tolerate an anti diarahoa tablet, so maybe when she goes to bed get her to take one of those with her meds.

    If it's any concellation I just got a text to tell me my sons dog keeps being sick, so you aren't up in the early hours on your own.
     
  14. ChrisMac

    ChrisMac Registered User

    Jan 31, 2016
    1
    Changes

    I have spent so much time cleaning poop and mum in the last 6 months and then, all of a sudden, it stopped. For 2 weeks now. Just when i was becoming an expert. We tried everything with diet and a small amount of exercise, what finally worked i dont know, it must have been an actual change in her somewhere. Small portions and eating more often maybe helped too....In many ways she is early stage alzheimers combined with vascular but the deterioration has been around communication rather than moods. So far, although i am sure it will come. I find being really present with whatever is happening and then sharing my feelings about it with someone else helps. As well as the debt of gratitude. She cleaned my poop for many years!
     
  15. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,222
    Merseyside
    Welcome to TP Chris :)
     

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