Mum's medication - won' t take, at my wits end, any ideas?

Many carers call them love lies, things you say to your loved one to help ease their stress. My mum also refused to take her aricept medication after diagnosis in 2015 and we soon gave up trying to persuade her to. She continued to live alone until 2020 but had to go into a care home for safety reasons at the start of the first lockdown as she started to wander the streets at night. She is now 89 years old and still very strong physically although gets a lot of infections which knock her for six.

I’m not sure that the medication would have slowed down the progress of this awful illness, but once we stopped pushing her to take it, our stress levels were lowered - for a while at least.

Bluebelle what you describe is not lying. It is responding to her reality. If you told her her husband had died, even if she had understood, she would have forgotten within minutes if not less.

I was responsible for an elderly aunt in a care home and we had this problem when her sister died. She would mention that she hadn't seen Mary for a while and another cousin would labouriously tell her she had died. she would be upset, but within a few minutes it was clear she had forgotten. I would just say something like she had been delayed and that response she seemed happier with.

Oldbat my mum was the same 7 years of hell She couldn’t hear and wouldn t keep her hearing aids in, she couldn’t walk, couldn’t see, cataracts. Couldn’t make herself understood talked in gibberish was in nappies it was hell on earth for her and those who loved her my Dad and me I wouldn’t wish it on anyone just to lengthen life by a few years
I m another who told lies I m afraid I never told her Dad had died she’d stopped asking for him and had no memory of if anyone had visited or not Even though she didn’t know she went within 6 months of him she never did like him out of her sight
I still miss them both so much 9 years on and have never been able to walk past their house since then

Thinking of you, it is a very difficult time . Go with the flow , don't fight against it , do what ever is in your power to reassure and keep your Mum as happy as possible. That way you too will have more peace if mind. Hang in there! ?

Thank you all for your replies.

I have really had my hands full with mum these last few days and hardly had time to read Gransnet.

To Aldom thank you for that, yes I have found that Aricept is available in liquid form so could tell mum it is a tonic. As for the little white lies I am telling all your replies make me feel better as many of you have had to do the same.

I have been again today to mum's and tried to be on her level and understanding of life with dementia.

Thanks again, some of your replies brought me to tears.

Just lost Mil to Alzheimer’s aged 97. She had aricept which did help to slow progress admittedly when she has some quality of life but medics stopped it when altzheimers took over. (I thought they would only dispense it when it was slowing disease). In all honesty she had no quality of life for last 10years. She couldn’t talk, watch tv, walk etc she ate very little but enough to keep her alive. It was a living death we lost her many years ago. I’m sorry for any family going through this.

Witzend

My mother was prescribed Aricept, but didn’t take it at all regularly. She would refuse to allow in the carer who was sent to make sure she took it. This wasn’t because she was anti medication, but because she could not remember at any given time that there was anything wrong with her, plus she’d be naturally suspicious of any random person wanting to come into the house. (Which was generally a good thing.)

TBH we weren’t bothered about her no longer taking it - it had evidently had some effect, since we’d noticed the ‘nasty’ stage, which we’d thought had passed, coming back.

AFAIK Aricept only delays the progress for a while, it doesn’t stop it. My mother went on to 97 anyway, and TBH an earlier release from that horrible disease would IMO have been more merciful.

If you want an honest opinion, OP, from someone who’s been through it all twice (my mother and my Fil) I wouldn’t let myself get too worked up about this.

This is a good post.

My mother was prescribed Aricept, but didn’t take it at all regularly. She would refuse to allow in the carer who was sent to make sure she took it. This wasn’t because she was anti medication, but because she could not remember at any given time that there was anything wrong with her, plus she’d be naturally suspicious of any random person wanting to come into the house. (Which was generally a good thing.)

TBH we weren’t bothered about her no longer taking it - it had evidently had some effect, since we’d noticed the ‘nasty’ stage, which we’d thought had passed, coming back.

AFAIK Aricept only delays the progress for a while, it doesn’t stop it. My mother went on to 97 anyway, and TBH an earlier release from that horrible disease would IMO have been more merciful.

If you want an honest opinion, OP, from someone who’s been through it all twice (my mother and my Fil) I wouldn’t let myself get too worked up about this.

Yes I agree with Shelflife, just slip into her world and play along with her. Or Could you tell her they a vitamin tablets and will help keep her skin looking so lovely, some little white lie like that.

I had a traumatic time with my mum!!. It has already been mentioned, but please remember mrsgeenfingers that your mum has slipped into another world and can no longer return, your best option is to slip into her world- you have the advantage of being able to return to reality. White lies became part of my life with mum. Lot of times I resortrd to fibbing! One occasion remains with me- her mother died when my mum was 22 so I never met her. One day I visited her in the nursing home and she was very distressed. I asked her to explain, she told me that her mother did not know where she was " she will be worried about me and will have my tea ready" if I had tried to pull her back into reality it would most certainly have increased her distress. My response was " Ok Mum, I will go home now and pop into your mums on my way back and tell her where you are and that you are safe and well and that you have had your tea" The relief on my mother's face filled me with love for her. I kissed her goodbye and drove home to my husband. There were lots of situations like that. It was easier for me and most definitely the best option for her. As for the tablets, yes of course you would prefer that she took them , however if she won't she won't, so please don't beat yourself up about it. From what I remember Aricept is not really beneficial in advanced dementia. Do you have the opportunity to speak to her doctor about her refusal to take the medication? My mum lived with us four years before she moved into care , something I thought would never happen! My suggestion is that you go with the flow , your mums peace of mind is a priority and if that means not taking the medication then maybe that is the way to go ? Please speak to a medical practitioner it may give you some solace. Please , please take care if yourself, it is so easy to put yourself on the back burner! Good luck , take care and I wish you well.

MOnica thank you but you do what you do for those you love. You also said you did caring but it doesn't matter how much you do a little or a lot but it's caring that counts. And you cared . ?

BlueBelle I agree.

Whiff I am humbled by your love and devotion to all your family but especially your mother. My own caring experience was minimal but I know how difficult that was. You deserve the caring equivalent of a VC for exceptional valour.

mrsgreenfingers56 I had my mom live with the last 18 months of her life. She had what they called senile dementia. She had been going down hill since she had her second breast removed at 86 ,first when she was 73 through breast cancer. But she was a fighter and got through the treatments .

She was calling me all hours of the day and night that's why I said I can't keep coming over. I don't drive and had been widowed when I was 45. Had looked after my husband who died in 2004 aged 47 with grade 4 malignant melanoma , helped nurse my dad with mom he died in 2007 aged 80 , looked after my mother in-law until her death in 2015 aged 91.
Both children had left home so for me it was easier to have her with me.

The last 6 months especially the last 4 where hell on earth. My mom died and left a violent foul mouthed harridan. Who through I was her mom. My mom's body lived but my gentle non swearing mom was gone.

But I loved her for all she attacked me everyday day. It's amazing how much damage a little 5st woman can do especially as I didn't want to hurt her.

She got so she wouldn't take her tablets even when I crushed them into her food. I tried everything. After talking to my GP she said if she won't take them then don't give them to her. I offered everyday if she was having a rare lucid moment she would say ok mom . But that wasn't often. My mom died aged 90. Even though she didn't take her tablets it didn't hasten her death. But because of not having the daily battle made her life more peaceful and less stress for me.

Your mom is 91 and you say going down hill fast. You need to ask yourself is it worth the daily battle to get your mom to take her tablets . Let's be honest and I speak from experience what quality of life has your mom got. And are the tablets doing her any good. If the answer is no as in my mom's case then don't give her the tablets.

My mom lived 3 months without any tablets. She wasn't in any pain until the day she started to die. At 5am on the Friday I knew she was going down hill rapidly. I phoned the GP at 9am as mom's breathing was laboured and she didn't want a drink or eat her porridge which was the only thing she would eat the last week of her life. But I made it with full fat cream and dark brown sugar which she loved.

The doctor came at 12 I said mom's dieing and she said yes. I had a prescription for end of life drugs incase mom was in pain. My nephew fetched for me after work. Mom slept all day and only woke at 5.30 pm and said she was in pain. The district nurse came straight away and injected her with some morphine. Mom finally died at 12.30am Saturday in 2017 .

I had looked after my mom for 10 years since my dad died.

I am very proud of the fact every time mom had to go into hospital once she was living with me the nurses where surprised she had no bed sores. But I told them I made sure she didn't get them.

I don't regret for one moment having mom to live with me . But my mom had no quality of life the last 6 months . Her greatest fear was losing her mind and not knowing who anyone was . And that's what happened to her .

I don't know if this has helped you at all but this is my story my experience.

It was only after mom died I realised how much it had taken out of me looking after her. But would do it all again. She was my mom and I loved her.

I believe not in length of life but quality . You need to ask yourself is it worth the battle to get your mom to take the tablets and are they doing her any good . If the answer is no as my mom's case don't make her have them. My mom not taking her tablets didn't hasten the end of her life. But it stopped the stress of her taking them.

I am only talking from my experience. You have to make your own mind up what is best for your mom and what she would want you to do.

I have no guilt over stopping giving my mom her tablets. As I loved and looked after her until the day she died no matter how much damage she did to me.

Like I said this is my experience.

My mother was one of the first to go on Aricept. It hadn't been passed for general use at that time. It didn't improve her condition but did completely halt the decline. We were able to enjoy a reasonable quality of life in the years she had left.
I do hope you can get her to take it mrsgreenfingers56.

I was going to suggest a key safe. The carer might have more success than you.

Sometimes they're much more compliant with strangers (a carer or district nurse) but resent being told what to do by a family member. Consider getting a key safe, anyway, just in case access is needed by a carer.

mrsgreenfingers56 Sorry to be blunt, but your mum is 91, has mixed dementia. No drug can change that. Aricept can help to manage the symptoms but it won't stop the inevitable decline.

Your mum doesn't want to take that (or other tablets?) Then why cause her (and yourself) undue stress about it? She doesn't want to go into a home or have carers at her house.

Perhaps let her live and enjoy whatever she can, for however long she is able to?

I worked in the care sector for 20+ years, mainly with dementia sufferers.

But it’s her choice to take medication or not maybe at 91 she doesn’t want to be kept going for the sake of it My mum had 7 hideous years with Alzheimer’s if I had the choice between those seven years or disappearing in a puff of smoke I know which I d choose
It’s hard really really hard for you but Aricept only delays it doesn’t cure I would not insist on it if she doesn’t want it

Hello, mrsgreenfingers56, I am so sorry to hear about your dear Mum, and I feel for you, I know how difficult it is as my sisters and I cared for our lovely Mum, who suffered Alzheimer's for more than 10 years.

It's great that your Mum is still in her own home, maybe "talk this up" with her and help her to see that taking the tablets will enable her to stay at home, with some support, for much longer?

Our family had good support from the Alzheimer's Society, perhaps they can give you specific advice re the Aricept. Our Mum accepted her medication, but they gave us support in other areas.

I know what you mean about "little white lies", I'm afraid we found that was sometimes necessary, for the best of intentions. I know that your Mum insists that she doesn't take tablets, maybe you could say it's to prevent Covid...if she is aware of the pandemic? I know I'm clutching at straws, but sometimes it's the strangest little white lie that actually works!
We had a book called Contented Dementia, with lots of hints and tips for families and carers, maybe you could find it on Amazon, I think you'd find it useful.

Please take good care of yourself, mrsgreenfingers56, it is so important that you have some time to yourself, and share the caring with family and / or professionals.
My sisters and I were still working so we arranged carers for breakfast and tea time, while we had a nightly rota for bathtime, bedtime, laying out next day's clothes, menu, etc. I was able to pop in at lunchtime as I taught nearby. This worked fairly well for us for a good few years before it was time for the nursing home.

I hope you can access appropriate help, I'm sure there will be more people along with more advice, I just felt for you as soon as I read your post and could not leave it unanswered. Please let us know how you get on.

Not sure if Aricept comes in liquid form. Sometimes crushing tablets and mixing into food works, but not always! Best wishes.

Can the doctor prescribe it in liquid form? We had the same problem with one of dad’s tablets, it’s worth asking. Dad took his linctus no problem.

mrsgreenfingers56 You are not telling your mother lies. She would not know or understand the truth, even if you told her.

When people have dementia, they live in a world of their own that has no relationship with yours. It is unreasonable to expect her to understand your world, so you must live in hers.

Accept her view of the world and use it for her best advantage.

When my uncle first went into care he was in constant fret that he had an appointment with the bank manager and that he would miss it. I tried reassuring him, without success. Finally in the fourth week, when he started fretting I just said to him 'It is alright, I have spoken to the bank manager, he understands, We have cancelled the appointment and will rebook it later. The worry went from his face, 'Oh good,' he said. And that was the end of the fretting.

You need to do the same, her happiness and content is the main thing and if you have to adapt your truth to hers. Do so.