Any help or advice welcome please

Discussion in 'I care for a person with dementia' started by Myrildinard, Mar 9, 2017.

  1. Myrildinard

    Myrildinard Registered User

    Mar 5, 2017
    I am new to being a full time carer ( but not to dementia ) as I have brought my mother home from the care home she was in to take on her full time cares I in her own family home. I could not leave her in the home after caring for my father who had cancer until he died I felt mum deserved the same level of respect and care in her own home. So I gave up my home, job and friends 200 miles away to move into the family home and bring her home. This was something mum wanted very much too.

    I am now so afraid I will not cope But I am really struggling with Mums constant toilet accidents, 24/7 hallucinations and sadly as her hypochondria of her younger years is now an obsession with her. She gets so angry and growls at me like a dog because I won't get the doctor out every 2 minutes. She does not seem to forget things as some people with dementia do , also she plays on the dementia label and pretends to be worse at times than she possibly is.
    . Since bringing her home I gave only had one night of good sleep ( meaning age only got up x 2 in the night). I try to toilet her before bed but she can't go, then after 1 hour, just dropping off she is wanting the toilet and wets herself on the way. The pads I have been given by the incontinence service do not prevent the soaking of the floor etc)Mums mobility is very poor and and she is registered blind. I understand how frightening this must be for her but am scared as I try not to snap at her .
    The only support I have from SS is a small contribution towards one day a week daycare and a couple of weeks respite per year . ( again not the full cost )
    Any coping strategies would be welcome please in relation to
    The hallucinations
    The hypochondria
    The incontinence
    Thank you so much
  2. marionq

    marionq Registered User

    Apr 24, 2013
    When my husband had a spell of incontinence I took the advice on TP and bought kylie sheets for the bed and a carpet protector runner which goes from the bed to the toilet. Both bought from A*****, I have the pads from the incontinence service and also pull ups I bought. He is not incontinent now and this is partly because I regularly remind him and take him to the toilet.

    You have been very brave to take this on and your post will act as a warning to others as to how things can go.

    Best wishes and keep us in touch with how things are.
  3. LadyA

    LadyA Registered User

    Oct 19, 2009
    Welcome to Talking point, Myrildinard. Can I ask, how long has your mum been with you?

    Caring for someone with dementia is totally different to caring for someone with an illness like cancer, as you are finding out! And, indeed, you may find that sooner or later, you are not able to cope single handed with your mum.

    Firstly though, you need more help and support than you have at the moment. Has your mum been assessed, seen a GP? She may need some medication to help with the hallucinations - my husband used to suffer badly with paranoia & hallucinations, but he was on medication to keep them under control.

    For now, maybe a chat with the National Dementia helpline on 0300 222 1122 (or by email at They can advise, and point you in the right direction for help.
  4. Beate

    Beate Registered User

    May 21, 2014
    #4 Beate, Mar 9, 2017
    Last edited: Mar 9, 2017
    I hate to say it but I think you should have left your Mum in the care home if she was safe there and well looked after. You are now finding out the hard way how exhausting it is to care for someone 24/7 on your own, especially with night-time disruptions. I know the guilt can feel enormous but in a care home you have an army of staff doing in shifts what you do on your own. You sound close to carers breakdown, and it might break you. Why don't you put her into respite for a couple of weeks and rethink your options. Cancer and dementia are two completely different beasts when it comes to caring. With dementia the mental capacity dwindles until they no longer know where they are. No one ever says that they want to go into a care home, but it might be the best option for her, and for you, because you matter too and shouldn't have to give up your own life completely. You're not a failure. You've tried, but maybe your Mum needs more care than you alone can give. And it should be about your Mum's best interests, shouldn't it? I'm pretty sure she wouldn't want you to give up your life for her.
  5. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    Hi Myrildinard,
    Firstly what a lovely Daughter you are giving everything up for your Mum, but the reality is that caring for your Dad with cancer is much different then caring for a PWD.
    I understand where your coming from wanting to give them both the same care,but dementia only gets worst and the person you care for are no more themselves.
    I really think you need to ring SS and get some sort of care package in place especially as you say your Mum is registered blind too.
    Has your Mum got a CPN if so they can give her something for the Hallucinations.
    I cared for my Mum alone at home until she passed in October, it was very hard with the hallucination in fact that was the worst part, with the constantly wanting to go home to her Mum.
    I had to cover all the mirrors up I the home. The CPN prescribed Rispiridone and Lorazapan which eased the hallucination but never ever went completely.
    I hope I was some help, there are lots of people on here to give advise and support don't go it alone.
    Big hugs xx
  6. father ted

    father ted Registered User

    Aug 16, 2010

    All done with the best of intentions but I agree with Beate. It is too much for one person. An awful lot can be coped with IF you get a decent nights sleep but I was exhausted just reading your post.
    I think the saddest thing with this awful disease is when you have had a lifetime of a close and loving relationship with a parent and then it disintegrates because that person's personality changes, they loose all reason, become paranoid, can't see any positives in change, etc etc. In my humble opinion your Mum needs round the clock care and no one person can provide that. Get help in the interim to give you time to find a permanent solution. Look after yourself.
  7. Philbo

    Philbo Registered User

    Feb 28, 2017

    I've not got much to add to the very good advice from other forum members. What I can advise though is to go back to the incontinence team to request that they provide pull-up pants.

    When I initially contacted our local team for my wife, they said they could only supply pads. When I pressed them, stating that the dementia meant she couldn't cope with pads, they eventually agreed to supply pads (only taken about 3 months of chasing and first lot are due next week!). It does seem to vary around the country, with some providing 2 pads a day, others, 4 - as in our case, but to coin a phrase, "every little helps"?

    Good luck and I hope everyone's advice is helpful to you.

    Best wishes.
  8. Bod

    Bod Registered User

    Aug 30, 2013
    First rule of caring......Look after number one.
    That's YOU!!
    Your no use, if your broken down.
    It might happen that the best care you can give, is to return your mother to the care home. But you can at least say "I tried."

    Hallucinations, Have her checked for UTI's, then a medication review.(including any over the counter/herbal medications.)
    Hypochondria, complete medical check up. For your benefit, you then know what's what.
    Incontinence, trial and error, till you find a product that works for you.(both) Pull-ups are often better than pads.

    Have a read of this web-site, the advice often works.

    Be aware that Dementia suffers, often go into "hostess mode" and can fool even GP's into thinking there's no problem. Be prepared to talk freely to her GP.

  9. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Hello and welcome. You have taken on a challenge that many of us would not have entertained. Two years on since my Mum died, I still sometimes wonder " Could I have managed with her at home" and posts, such as yours still convince me that I could not.
    My Mum was blind. I found that she hated anything new or different, because she had lost the confidence of coping. I was lucky in many ways that the blindness developed slowly, as did both her dementia and the cancer which caused the blindness.
    Certainly, as she became incontinent too I could not have managed her at home. I have a weakened spine and other health problems which meant that, even though she had lost a lot of weight, I could not have supported her bodily for long.
    Ask for a referral to the Occupational Therapist. They can advise on commodes, toilet rails etc. Get Kylie sheets for the bed. Ask the Incon. Nurse for pull-ups or stronger pads. Ask the GP for a medication review.Ask the Memory Clinic about medication for the hallucinations. Are you getting Higher Rate Attendance Allowance( paid to Mum). Ask SS for a carers review as well as a review for Mum.... and DON'T play down the difficulties. It's too easy to say "I can manage"...... you can't 24/7/365!!!!
    And lastly, seriously, have a look around at Care Homes in the area. It's not a case of can't care - don't care - won't care...... more a case of can't care...get help.... care in a different way!!

    Don't struggle on on your own any more.
  10. Peirre

    Peirre Registered User

    Aug 26, 2015
    I too can only echo Beates post.
    I too am single handidly caring for a parent with dimentia who is double inco, I've previously cared for a parent with cancer. So I'm well aware of the mental stress involved, and despite my heroic efforts my Superman T-shirt is loosing its lustre & I've had to raise the white flag and admit defeat, & have had to phone SS to instigate the process of getting carers in to help relieve the work load.
  11. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    Hi, like you I moved house, 200 miles away and gave up everything to care for my Mum. I am afraid it only took a couple or months to realise I couldn't do it, I couldn't cope with the sleepless nights, her lack of reasonableness and her constantly being in danger as she kept wandering etc.

    So I took the decision to put her in a care home, with a very heavy heart. But now I think it was the right thing to do. She gets attention from people who are not fraught and exhausted but also I made a decision to stay nearby (as she is very elderly) and she has always benefited from me visiting her.

    I had always thought I wouldn't 'put my mother in a home' but dealing with aspects dementia can be beyond difficult. The other thing is that now my Mum is heading towards the end of her life I am pleased she gets really good care. She has been in a home for 3 years now and apart from that initial guilt I don't regret it at all. I think best to put your last gasp of energy into just finding the right place for her. Best of luck.
  12. Myrildinard

    Myrildinard Registered User

    Mar 5, 2017
    Thank you

    Thank you so much for your kindness - I certainly do not feel brave , just incompetent.
  13. Myrildinard

    Myrildinard Registered User

    Mar 5, 2017
    Thank you for this information Lady A . Mum has been assessed for her needs but the " panel" at Social Services have only agreed to fund a contribution to one day a week day care (£30) and 4 weeks respite a year at £300 per week.
    I have booked a review of her medications as I do not know when it was last checked the nursing home could not tell me. I really appreciate your advice- thank you
  14. Myrildinard

    Myrildinard Registered User

    Mar 5, 2017
    Any advice

    thank you kindly for all of your advice and support. I am overawed by your help

    . I am determined to give mum all the help I can and am confident I would be able to manage given even just a little more support from the statortory bodies and in particular SS. I have worked in the care industry ( third sector) for over 20 years , initially hands on and latterly in a care management position but nothing can prepare you for the 24/7/365.

    Mum is on the upper level attendance allowance and has been " assessed" but I am going to ask for a reassessment now she is home. I am going to follow up on all of your advice and in particular look for local groups which I can perhaps take mum to and art the same time meet up with other people myself. I have arranged today for the community nurses to come and reasses the incontince .
    Once again thank you everyone

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