mum in denial not accepting help, beginning to dislike her

[Sirena]

So its not just me. I am now at the point where I don't want to have to be with my mother. My dad aged 88 is her full time carer and I have to battle with him too. If one more person tells me its a shame for my mother I swear I will kill them. She lives the life of riley without a care or worry in the world. Its the rest of the family who its a shame for having to cope with her.

I know what you mean. I've been organising my mother's care for over 4 years (she's now in a CH). She is happy as Larry, she has constant help, reassurance and comfort. She doesn't have a care in the world, she doesn't even know Brexit or coronavirus exist. It's me who has had to sort out her care for the past four years, taking responsibility for doing the best thing at each point and worrying about what happens when her money runs out.

 

[gp7]

I don't think I am ready to share just yet as the situation is too upsetting..

 

[Pete1]

Hi @gp7, a warm welcome to the forum. There is a wealth of experience and some great support. When you feel like sharing we are here to listen. Stay strong.

 

[Izzy]

I don't think I am ready to share just yet as the situation is too upsetting..

Welcome from me too @gp7.

I’m glad you have found the forum as you will get a lot of help and support here. If you’re not ready to share yet that’s ok. Just keep in touch and share when you’re ready.

 

[Bunpoots]

Hi @gp7 welcome from me to.

I completely understand how difficult it is to write down upsetting things - I’ve deleted quite a few of my own posts over the time I cared for my dad! It does help to share though and nothing will shock on the forum. Whenever you’re ready we’re here for you.

 

[Weasell]

when You are feeling down then everyone recommends councillors and talking about things.
I decided to discuss my feelings with a friend. They didn’t understand, and at the end of it I felt disloyal and traitorous.
I am not making that mistake again.
when enquires are make by anyone as how we are doing I say ‘ fine thank you just plodding on’. Or similar. If you wish to share there is no better medium than posting. You will talking to people that understand any emotion you can ever feel.
i was going to say no one will judge you, but frankly even if they did who cares? The forum is anonymous!

 

[Nannyslittlechip]

We had this problem with our Mum. She’s three years in from diagnosis and is deteriorating fast. We got her a carer to shower, dress and give meds. She was mortified at first but absolutely loves her. Your mum will rebel but in her mind she is capable but she will start to enjoy a visit every day and it does give a routine to help with mental health. Please stick with it. You’re doing this for her wether she understands or not. She will Thankyou for it eventually. As another member said even tell her she’s a housekeeper and she’ll think this is amazing. Good luck xx

 

[Buckeroo]

I am new to this site. Although my mother has has is but issues for years (always been tricky and knows best!) now dementia has been diagnosed and I find it hard to forget her behaviour when in good health and now offer sympathy now she is unwell and deteriorating! Mood swings are horrendous. One minute childlike and desperate to know what's happening to her then aggressive, argumentative and thoroughly unpleasant. I love her but don't always like her. I'ver spent more time in the bathroom silent shouting than is good for any adult in the last 6 days staying with them.

I've also turned into a parrot - repeating verbatim every answer to every question already asked. I spend the majority of my time avoiding any triggers to set her off (haven't managed to understand them all yet, early days sadly). I don't live with my elderly parents but visit weekly. Organised a retired nurse to administer medication this week every morning on-going (and to also be our eyes and ears) as mother took a double dose of medication last weekend and we spent all of Saturday in local A&E. Found she also had a UTI - hoping her current emotional roller-coaster is worsened by UTI confusion and will add away once antibiotics kick in. If not we are in for a bumpy ride.

My dime today is leaving her with my 92 year old father who is of sound mind but dealing with soon to not drive, failing eyesight and a total lack of communication ability towards someone always haranguing him! She then cals me to say what a dreadful husband he is and wants to leave him. He calls me to say he can't stand living with her and wants to run away! So the most toxic environment not likely to improve.

I want to run for the hills too! Very teary and stressed today having set-up great help with medication but now dealing with calls from my mother telling me how lonely she is; bored; doesn't need help; why is a stranger coming to my house; I don't need it .... on and on and on .......

So my very best wishes to you all in the same situation. We are only human and doing our best even if our loved ones don't have a Scooby-do!

 

[Weasell]

I am new to this site. Although my mother has has is but issues for years (always been tricky and knows best!) now dementia has been diagnosed and I find it hard to forget her behaviour when in good health and now offer sympathy now she is unwell and deteriorating! Mood swings are horrendous. One minute childlike and desperate to know what's happening to her then aggressive, argumentative and thoroughly unpleasant. I love her but don't always like her. I'ver spent more time in the bathroom silent shouting than is good for any adult in the last 6 days staying with them.

I've also turned into a parrot - repeating verbatim every answer to every question already asked. I spend the majority of my time avoiding any triggers to set her off (haven't managed to understand them all yet, early days sadly). I don't live with my elderly parents but visit weekly. Organised a retired nurse to administer medication this week every morning on-going (and to also be our eyes and ears) as mother took a double dose of medication last weekend and we spent all of Saturday in local A&E. Found she also had a UTI - hoping her current emotional roller-coaster is worsened by UTI confusion and will add away once antibiotics kick in. If not we are in for a bumpy ride.

My dime today is leaving her with my 92 year old father who is of sound mind but dealing with soon to not drive, failing eyesight and a total lack of communication ability towards someone always haranguing him! She then cals me to say what a dreadful husband he is and wants to leave him. He calls me to say he can't stand living with her and wants to run away! So the most toxic environment not likely to improve.

I want to run for the hills too! Very teary and stressed today having set-up great help with medication but now dealing with calls from my mother telling me how lonely she is; bored; doesn't need help; why is a stranger coming to my house; I don't need it .... on and on and on .......

So my very best wishes to you all in the same situation. We are only human and doing our best even if our loved ones don't have a Scooby-do!

So sorry to hear your problems.
i have started my mother on a Pivotell medication dispenser with tipper. Today was actually the first day of its use.
It’s kind of like a cat feeder with timing mechanism.
We have progressed from me filling weekly boxes to pre filled dosette
boxes delivered from the pharmacy, at the first sign of that failing I have purchased the Pivotell from eBay.
I do understand that normal people get them free from social services.
This may be an idea if you have not got seven day care available.
I told theraputic untruths to get the box accepted, as mother knows she never has any trouble remembering or taking her medication.
I told her I have a pharmacist friend who has warned me there are going to be supply problems with the cardboard dosettes and so we need to change to the Pivotell before this problem arises.

 

[Buckeroo]

So kind of you to respond with possible solution to medication taking. Sadly this would not help us as my mother thinks her pills are being taken (pinched). So she hides them to keep them safe, then can't find them, no pills no medication taken! We have had to engage a private retired nurse (luckily lives closely and an angel) who takes the medication away with her off site. This has reduced mother's stress levels and is slowly eradicating another trigger which was the constant checking and counting of her pills. She only takes medication in the morning. Monday night she would not go to bed until I had shown her all her medication in the boxes (the day before the nurse took over my duties so they were still in her home). I hope in time she will accept that a "stranger" enters her house every morning to administer her pills - early days and currently not liking it one bit. We have convinced her its to stop that person from taking them! If they are safe off site with a qualified nurse no one can get hold of them. A kind lie.

Also sadly our mother is no longer able to comprehend what she should be taking or when and for what. Needs to see the physical boxes. So left to a method at home that she can easily "hide" is not an option, nor is a pill box as she needs to see the actual tablet packets so she knows no one is poisoning her.

Thank you again for taking the time to respond. You have no idea how much it helps as its a horrible, tricky time currently.

 

[Lynmax]

Goodness, I can't remember the number of lies I told my mum to get her the help she needed! I often told her that support ( assisted bin collection, security cameras etc) were provided free by her council to people aged over 85! When we decided to get carers in to cook a meal and provide some company at weekends, I said they were friends of my brother who just wanted to pop round for a chat as he was so busy!

Mum managed to live on her own for five years after diagnosis ( with tons of support from me and my wonderful siblings) but eventually, right at the start of the lockdown, things escalated and after a hospital admission following a fall, mum is now living in a care home - where she will remain. As I have not been able to visit her for two months, I need to prepare my "love lies" for when I can visit to explain why I cannot take her home! I think I'm going to blame the doctors!

 

[Sarasa]

My mother did the hiding pills and thinking they’d been stolen thing too. She also had a meltdown in the doctors surgery when she thought the pharmacist wasn’t giving her the right medication. That prompted a psychiatrist visiting her at home to assess her and also an attempt by the local medicine support team (not sure if that’s the right name) to get mum to accept a dossette box. The latter caused another meltdown as mum thought we were deliberately confusing her. In the end GP decided to stop all medication as mum luckily took none that was essential.
Very shortly afterwards I moved her into a care home , where the medication has resumed and more added. She’s now fine with people giving it to her. I think someone coming round each morning on the grounds of keeping the medicine ‘safe’ might have worked if mum had stayed at home, but I guess the doctor would have only suggested it if mum’s needs were critical to her continued well/being.

 

[Buckeroo]

When confronting a new challenge for the first time the "hiding of pills" scenario and also our mother says all her clothes have been swapped - none are hers, she would not have bought them they are hideous (even about one of my dresses I lent her years ago!) - someone has changed them etc etc. you cannot imagine that anyone else is going through anything similar. All very sad that it appears so many of us are.

COVID-19 is a threat but at this precise moment I think any sort of dementia is worse. Its the most horrible disease watching a loved one diminish before our eyes and turn into someone most of the time we don't recognise or relate too, or like. Love yes, but like is difficult most days.

Thank you for your responses. . I can relate to everything you have said. We mist remain strong. And safe!

 

[canary]

We have convinced her its to stop that person from taking them! If they are safe off site with a qualified nurse no one can get hold of them. A kind lie.

I think thats a very inventive and convincing lie.
When people cannot understand the reality and accept the truth, you have to enter their reality and use "therapeutic untruths"

 

[Lyd]

My mum was diagnosed a year ago and has become increasingly worse but she still will not accept anything is wrong with her which makes it very stressful when I try to help.
I need now to get her a carer but she will not allow me to .
My lovely,caring,kind mum has become someone that I’m beginning not to like which is awful.

It doesn’t matter at all if you don’t like your mother.
what matters is you don’t display the behaviours you would usually use on someone you don’t like.
she can not see inside your head!
I have been on a steep learning curve. In particular to let my mother do what she wants and not nag ,example, heating nearly a pint of milk to make a coffee. There are so many different examples but the challenge is ignoring their activities. In this case I would just say ‘ there are some nice biscuits in the tin’.
The invisible parrot on my shoulder can be shouting ‘ that’s a ****waste of milk’ but she doesn’t know that.
They talk a lot about love lies on this forum.
i think I would claim to have hurt my back and have someone come in (only for a month!!!!??) to help with bending tasks. I don’t think I would use the carer word.
Short term home help service perhaps.

So much to agree with.
I dont know if this helps? I am basically quite bossy. What I have learnt though this journey is that i often over step the mark and while some things are dangerous other things are ok to let go. The voice in my head tells me "what will people think..."
I would work out what the most important things are and introduce a way to get those done, by stealth and indirectly. The first thing might not work but you will get there.
It is normal to begin not to like your mum sometimes. I try and banace that by slowing down and find the small moments of joy and grab on to those. They will be different to what they used to be and there is a challenge not to be sad about that.

 

[Weasell]

I always try and use Granny G’s compassionate communication. I think this is the link?


http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf
But sometimes I get it wrong.
The last time was ‘ someone has stolen my rings’
I was tired, grumpy and distracted.
I said ‘ not again‘ ?
This led to world war three.
Simply summoning up the energy to say ‘ Don’t worry, lets have a look they may turn up’ would have worked so well.
Oh well, practice makes perfect and I get plenty of practice.
( The rings are on a chain round her neck now, and it’s working well!)

 

[Buckeroo]

I've printed off the Granny G's compassionate communication. Thank you. One copy going to me elderly father in the hope he can execute its content for a more harmonious household!

 

[Fullticket]

I've not posted for ages, being now an ex carer for my mum but I do still read the posts, as I am now helping run a carers group in my local area.
I didn't like my mum to begin with to be honest but who can stand back as see someone living on their own, with dementia, being scammed, not handling their money or their medication, etc. etc? She lived with me for six years before she died a couple of years ago - from a physical problem that the dementia was hiding.
I lost count of the love lies I told, the stories I made up and the times I ran screaming into the garden. Not sure it helps but all I can say is that you do get used to it; it becomes routine and it doesn't bother you as much as it used to. Every day they lose a little bit more of themselves so the argumentative, independent person will become more confused and, perhaps, less argumentative, less 'with it' as time goes on. Medication will be fought against because they cannot remember what it is for or that they are on medication. Then they will forget about their medication and hopefully take it without fuss because the disease has progressed. I found that having someone come in to get mum up in the morning was an absolute must (on a government scheme of course, mum had been specially chosen to receive this lady who was training to be a care assistant. Mum was asked for her feedback and I dutifully filled in a form 'from the council' until she forgot about it and just accepted the lady as a friend).
Looking back I might have done things differently and I didn't think that I had been a particularly good carer, let alone a good daughter (my take on it is I did a good enough job), but other people seem to think I did all right and what I learned I can pass on to others now.
Hang on to the nice bits, the funny bits - that's what I remember now: the interminable discussion every time she saw a field (we live in the country!) and her saying it reminded her of the war and the American soldiers saying that they thought our pocket handkerchief fields were so cute; the towels and flannels in her bathroom having to be pink, otherwise she thought she was in a hotel and removed them to her bedroom; thinking my partner was her boyfriend (well, I thought it was funny, he disagrees!); complaining that she did not like strawberry ice cream and then picking a strawberry cornet when we went out. Just do your best, it'll be fine!

 

[Ramblingrose]

Since lockdown my mum has become much more confused. We have had a urine test which showed a water infection so will be starting antibiotics ASAP. She has had dementia for at least 10 years building gradually to now where she is speaking to people in the middle of the night. Seeing things which aren't there and having visits from long dead relatives. Her short term memory is virtually nil now but she still thinks she is alright. If I have to explain to her about Corona one more time I will burst a blood vessel!! I have followed advice on having written prompts around the house etc. "What note"? she asks. Waste of time. The only way to keep her occupied is to play music to which she will dance around. God Bless Alexa.

 

[Mobbin17]

Hello everyone, I have joined the group this morning , yesterday was a challenging day and I googled for support groups . I am married and with my husband we are caring for my 88 year old Mum. Dementia was officially diagnosed mid April . Reading through these posts and replies , I know that she has been suffering for a couple of years really. Mum has been living with us for about 4 years , not for any health reasons at all . Covid 19 is a challenge for all of us I know , but has really confused my Mum and has magnified all the problems she already has . Constant questions about going out for a meal , going shopping, planning a holiday , are the children ( our grandchildren/ her great grandchildren) at school today the same questions over and over again. I now realise that it had already been happening , but the current situation has added new challenges . Though she still showers or washes every day , we took over cleaning her bedroom, en-suite , changing her bed and sometimes washing her clothes as things were beginning to smell . So , yesterday , after spending a little while talking to my son and daughter-in-law from our doorstep, Mum went back inside . When we came back I. We narrowly avoided walking through poo in the hallway, and Mum had obviously gone upstairs to change . My husband and I cleaned the floor .She said nothing when she came back down ,just put her clothes in the washing machine. By late afternoon ,when I asked her if she would like some soup ,as she obviously hadn’t been well ,she just looked at me blankly , no real reaction and said that yes she’d have soup . No reaction at all ,no apology,no thank yous . Was I right to mention it to her ? Sorry to ramble .