Any advice but just an ear is fine

[Anon33]

Hi,

I care for mum and dad and live in the same property, they have annexe accommodation attached to my house. Dad has a diagnosis of dementia. I have my suspicions about mum too.

During lockdown we had no carers as we had been managing previously with some help from a lady cleaning. Over lockdown my parents deteriorated to needing help with all medication, food, cleaning, laundry, and some personal care mainly showers. I had to stop dad going out to shake everybody by the hand and thank them for their help.

About a month ago the lady who cleaned returned doing additional hours for laundry and a few meals a week. This has given me some time to catch up on some house maintenance and also I have two children 11 and 14. Although I hardly get much time with them.

both my parents are in big denial. They don’t need a carer they just need help with a few things.

I think I am just tired. I am finding Dad at the moment really intense. He has Started his tidying up phase again, and furniture moving. I find this exhausting and stressful. Apart from the obvious I can’t find anything, so everything takes me even longer. ...To the worry of him moving tables at 86. I deliberately don’t help because I want this to stop and I think if I help it will encourage him to do it more.
it really gets me down. When I go in he will say something like “look at what I have done!“ like I should be really pleased with his achievements.
he constantly asks me how I am. He constantly hugs me and tells me how he appreciates everything I do. For a while it was lovely but I am finding it suffocating. I don’t want to push him away because I know one day I will do anything to have a hug but at the moment I feel so stressed. Even the days the lady is here with them I have to see them everyday for medication.

feeling low today.

 

[nae sporran]

A lot of worries at the moment as if dementia is not enough to worry about, Anon33. You are not alone in feeling low, and I can certainly listen and offer empathy. I was just wondering your parents would accept a cleaner rather than a carer if you can get a carer in just to help with medication on the basis they are helping you and helping them.

 

[Anon33]

Thank you, yes I think help with the medication is perhaps my next move.
I have been shielding my 14 yo as he is severe asthmatic so I have avoided additional help as much as I can.

The jigsaw puzzles have arrived! So I am hopeful this will calm dad down a bit and he will settle. He won’t do a puzzle twice, unfortunately, sometimes he thinks he has done a puzzle even if it is in its sealed wrapper. It does mean I need a constant supply of puzzles.

thank you for replying

 

[Grable]

My cousin has employed a 'Personal Assistant' for her mum. She does the laundry, sorts out medication, makes lunch, takes my aunt to the shops and does some cleaning. More than anything else, she keeps her company. At first she visited just once a week; now she does Monday - Friday, an hour on three days and two hours on 2. She is, basically, a carer, but she wears normal clothes and is just wonderful! I wonder if you could find somebody like that for your parents? It suits somebody who has school-aged children and wants a part-time job that fits in with school commitments.

 

[lemonbalm]

That's a big strain on you @Anon33 . Stubborn parents are so difficult. Could you perhaps sneak someone in by saying that you have hired them to help you, rather than them? Some people manage to sneak in help by saying they are helping to train somebody who needs the work.....

 

[Anon33]

My cousin has employed a 'Personal Assistant' for her mum. She does the laundry, sorts out medication, makes lunch, takes my aunt to the shops and does some cleaning. More than anything else, she keeps her company. At first she visited just once a week; now she does Monday - Friday, an hour on three days and two hours on 2. She is, basically, a carer, but she wears normal clothes and is just wonderful! I wonder if you could find somebody like that for your parents? It suits somebody who has school-aged children and wants a part-time job that fits in with school commitments.

Thank you that’s a good thought.

iThank you for your ideas, I don’t mind disguising the help but sometimes not having the denial would be a help. It also means I have to confront driv the cars. I don’t think either of the, are safe to drive anymore. Dad has blacked out twice. mum could barely get into the car so I don’t think her flexibility will be enough to see all around. I suppose it will just drift until a point where it’s agreed they won’t drive.

 

[Anon33]

That's a big strain on you @Anon33 . Stubborn parents are so difficult. Could you perhaps sneak someone in by saying that you have hired them to help you, rather than them? Some people manage to sneak in help by saying they are helping to train somebody who needs the work.....

I do need to get help. Help for the whole situation, and definitely being useful to others appeals to them, thank you ?

 

[canary]

I don’t mind disguising the help but sometimes not having the denial would be a help.

Yes, the denial is a big problem in people with dementia, although often it is not denial, but a little talked about symptom of dementia called anosognosia - which means that they are literally unable to comprehend that they have anything wrong with them. In their minds they are just the same as they ever were, its just everything and everyone around them that has changed.

If your parents have anosognosia, you will never be able to persuade them that they need help (or mustnt drive) and you have to be sneaky about it and use therapeutic untruths (aka little white "love lies") to persuade them to do the things that they need to do.

 

[Anon33]

Yes, the denial is a big problem in people with dementia, although often it is not denial, but a little talked about symptom of dementia called anosognosia - which means that they are literally unable to comprehend that they have anything wrong with them. In their minds they are just the same as they ever were, its just everything and everyone around them that has changed.

If your parents have anosognosia, you will never be able to persuade them that they need help (or mustnt drive) and you have to be sneaky about it and use therapeutic untruths (aka little white "love lies") to persuade them to do the things that they need to do.

Thank you...I find this concept really hard to get my head around. In my logical head I totally understand that it is a symptom, but I struggle accepting it...my own denial is mirrored! I can see the funny side of that !!!
Just like being a mum and raising my kids, these relationships teach us so much about ourselves.

 

[hooperswan]

Hi I was looking after my mother by myself but she completely lost mobility and so she had to have carers,it was a huge relief and has worked out well,so that's the way I would go it might save you from having a breakdownI was close to that 4 years ago.
I still look after my mum full time and feed her,but the carers have taken most of the strain off me by doing the toileting 4 times a day and giving her a bed bath in the morning.

 

[Whisperer]

Hello

Please try as you say to ”get your head around“ the concept of Anosognosia. I was very much in your situation over a year or so ago, bashing my head against my mum’s “denial”. Strangely enough it was @canary who introduced this information to me. It made me stop and look at the situation again. What my mum would have called “the penny dropping moment”. Once I accepted that idea then feeling bad about telling love lies just fell away, I got better at distraction, I accepted mum was not being awkward it was just her limited understanding of what was happening to her life, etc. I had to change my approach. I no longer felt like I was destroying my relationship with my mum, I was actually rebuilding it in a different light. It was not easy, but with practice it got better. Most importantly our relationship improved because I went with the grain, where my mum was at, not where I wanted things to be. I put logic in my bedroom drawer and accepted it no longer had a key role in my relationship with my mum. For that I will always be grateful to canary.

okay so today we went to have ear suction treatment for my mum. I emailed the provider when making the booking, explained my mum’s Dementia, that I held both types of LPA, that my mum was in “denial” of her condition, as no point having a running conversation about Anosognosia. I underwent the treatment as well. Okay mum let’s skip about the ear infections you cannot remember cleared up by ABs. This is something the government has introduced. It’s free mum, I will be with you in the treatment room, no worries I will answer any questions, yes we can then go home and have a cup of tea. The treatment lady was great, they allowed me to keep up the above fiction, I went first to show it was easy to do with a face mask on. Last year I would have tried discussions on her ear infections, logical to get treatment, do not worry about cost mum I will pay, etc, with each such statement creating a counter argument, or confusion, or denial. Bit of planning, love lies, confirming to third parties exactly where my mum is at, trust in them being rewarded, a potentially fraught experience went okay. Mum accepting we are going on a free “bit of an adventure”. All forgotten within minutes of leaving the building.

I give the above example from my own experience to really encourage you to look at Anosognosia. Okay a nice medical name for denial you may think. But when I grasped it was a condition which was causing me to treat mum as part of the awkward squad, when in fact it was just her inability to grasp her circumstances my whole outlook changed. You cannot say denial when your loved one is just confused. Denial you may hope to win over with logic. Forget it. So what will instead get me round that obstacle instead. Economy with the truth, blatant love lies, distraction, keeping things as simple as you can, etc.

Sorry to prattle on but I really think this is a big part of Dementia that does not get mentioned enough. Yes at one level you still have the same problem. However for me it resulted in a complete rethink of how to deal with my mum’s Dementia, took away a lot of the emotion and as I say put logic in the drawer, not in between me and my mum. When it was there between us it just caused tension, friction, etc.

 

[nita]

This is a definition of the term. I have had experience of this, not only with dementia but also mental illness in my family. The person literally can't help it.

Anosognosia, also called "lack of insight," is a symptom of severe mental illness experienced by some that impairs a person's ability to understand and perceive his or her illness. It is the single largest reason why people with schizophrenia or bipolar disorder refuse medications or do not seek treatment.

 

[Hazara8]

This is a definite of the term. I have had experience of this, not only with dementia but also mental illness in my family. The person literally can't help it.

Anosognosia, also called "lack of insight," is a symptom of severe mental illness experienced by some that impairs a person's ability to understand and perceive his or her illness. It is the single largest reason why people with schizophrenia or bipolar disorder refuse medications or do not seek treatment.

There are a number of agnosia of which this is one. In effect the one living with say anosognisia simply cannot perceive what might be abnormal behaviour as not quite normal. This is why to challenge or argue with dementia is not only pointless but can create more angst and more confusion.