1. CarolynA

    CarolynA New member

    Jan 7, 2019

    This is my first time on the forum. I, like many people on here, am having major problems with my 76 year old Mum. My stepdad is 86 and is her main carer but he too is struggling terribly due to his age and health. I can’t even tell you what her ACTUAL diagnosis has been due to the lack of good communication from my stepdad, not because he withholds info, but because he insists he’s responsible for her and won’t let us go to the doctors with her. I only managed to find out she had been diagnosed with dementia 4 years ago (even though we knew already) when she had to be taken to hospital about 18 months ago! Anyway, despite all this, neither of them will accept ANY help that has been offered to them. I always knew that would be the case. The dementia team has discharged her from their care ?? and referred her back to her own doctor. Her own doctor retired this year so now the new doctor knows nothing about her, and she refuses to go and see him. I have tried to obtain enduring power of attorney which has since backfired dramatically causing her real upset as she thinks I’m trying to ‘steal’ her money. My stepdad doesn’t understand the concept of the enduring POA and thinks I’m talking about her will. I’ve had to cancel the whole process as it made my mum far worse! She always was quite a difficult person to approach and now it is just impossible, as I’m sure you all know, logic just doesn’t exist anymore. She is now constantly wanting to “go home” to her mum (who passed about 15years ago) and is getting out of her house, my stepdad automatically rings me as he isn’t able to walk after her, so I’m the ‘rapid response’ who has to try and find her. Thankfully I have managed to get her pretty quickly. I’m sure many of you have families of your own to look after too just like me, so it is all such a strain. My mum and stepdad also always enjoyed a bit of a drink every now and then, but now she can’t! But they still do it, which obviously makes the situation 100 times worse, despite me and my siblings trying to tell my stepdad to stop buying it. If it’s not in the house my mum doesn’t go looking for it. Yesterday was a particularly bad day as she was just wanting to go home every 5 minutes and had her coat on and off so many times.... and at one stage got so angry about it that she poked and prodded me accusing me of treating her like a child. I can cope with this at the time of happening but it so upsets and plays on my mind later on that I decided to join this forum just to sound off. I am at my wits end, she has no personal hygiene, she is now sleeping in her clothes, I have managed to get her to change but can’t get her to shower. My stepdad tried his best, but the language he uses with her eg “it’s not your fault” or “you can’t get out cos you’re locked in” etc just don’t help the situation. We have no help, her doctor won’t aoeak to me, and I just don’t know what else to do. I’m sorry this is so long and probably a bit all over the place but I’m just writing as the thoughts come into my head! I have a strange and strained relationship with my stepdad as he seems to think me and my siblings should be doing more for them, but we ARE doing all we can, but he just throws it back in our face. I’ve bought many dementia aids such as whiteboards, colouring books, I’ve labelled wardrobes, I’ve labeled kitchen drawers, I’ve decluttered rooms and wardrobes, I’ve got old photos framed so she can see her family and recognise her home, got their wedding video made into a dvd, so she could see she was married to my stepdad (as she often forgets she’s married) etc but when I go in, everything is put away or hidden as he doesn’t want to upset her!! I’ve also offered to pay for a cleaner to come in once a fortnight to help my stepdad, as he struggles with this, but he refused. I often get late night calls from my stepdad crying about what we can do about this, that he needs more help, but I cannot magic more hours in the day and he won’t let any help come in so I’m just left frustrated and basically sad all the time!! Anyway, I’m sure there are people worse off, although some days it doesn’t feel like it. I would appreciate any suggestions whether I’ve tried them or not....just to know that someone else is in my shoes would also help! It’s not all WOE is me as I know it’s my mum suffering and my stepdad baring the brunt, but how can I get them to have a bit more help?!
  2. CarolynA

    CarolynA New member

    Jan 7, 2019
    Sorry, this is not just a recent situation. It has been ongoing now for about 3 years, so hence my witts end!
  3. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    This is very similar to the situation I had with my mum (in her 90's) who was looking after her sister who had dementia (late 80's).

    My mum refused all help, insisting she could look after her sister. The fact is she just couldn't cope. I kept offering help and she kept turning it down.

    In the end, the first help to come into the house was a cleaner once every 2 weeks, but at least that got her used to a new person coming into her house. Not long after she relented and agreed to 1 hour a day to help her sister wash and get dressed. Not long after that we increased it to 8 hours a day and in a few weeks time we're getting 24/7 live-in care for her. She's now complaining I can't get it in place today! That's how things can change.

    So, the point is if you can just try and get a foot in the door with care, it will make things easier later when it becomes critical.

    I know it's not going to be easy, but try and persevere with getting LPAs in place for both of them. It's going to become really difficult later if you can't get this in place now. One tip which might help is that I used a specialist to apply for my LPAs and that helped when it came to get my mum and aunt's agreement because they always seemed to trust 'professionals' more than me! He made it very clear to them the reasons why the LPAs were a good idea and dispel any fears they may have had that I was doing it for some sinister reason.

    And don't forget about you. You can't do it all yourself so try and get outside help to assist with all of this. There's plenty on here for a start.
  4. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    Central Scotland
    I read your post and could not leave it unanswered. I am not an expert in this situation but I am sure that some who are will answer shortly. In the meantime my first thought is this. Why don't you make an appointment for your mother with her GP, don't tell her about it and just turn up yourself, tell the GP your Mum refuses to come, and explain the situation to him/her. Follow that with a call to SS (who have a duty of care for vulnerable adults i.e. both your Mum and stepdad). That will put them both on the radar and perhaps your Stepdad would take more notice of someone 'in authority' rather than yourself.
  5. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Welcome to TP, Carolyn. Sorry your mums' condition and your stepdad's refusal of help is causing you such distress. The only thing I can advise if neither of them will go to the GP is to write a letter to your mum's GP explaining the situation. The Dementia Helpline will give you some good advice on your rights and how to get help.

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