Question on effect of early dementia on emotional response

[woodlandwanderwoman]

Hi all,

This is the first time I have posted in this forum, even knowing that people are reading my question makes me feel more supported than before I found it. Sorry it's long for something so small but I feel background is important.

My mother has early stage dementia, although the cause hasn't yet been confirmed I am quite certain it is vascular dementia following a period of dangerously high blood pressure.

She has been seeing doctors for over a year now although I had noticed changes in judgment, behaviour and mental agility for a couple of years before that. By nature she has always been a very strong woman, very compassionate and intelligent. However, she is not without her faults and has always had a very strong sense of injustice, taking offence at things far too easily and too often telling people what to do rather than listening to them.

Tonight we had a row and I feel awful, I would like to ask your experience of how dementia has affected the emotional response of those around you to otherwise normal situations.

It was a stupid row... DS is 18mo and we ALWAYS take our shoes off in the house, partly to keep floors clean because everything ends up on his hands and in his mouth, and partly because frankly it's our house, our rules. My mum always takes her shoes off then goes out and walks round outside in bare feet and then back indoors again which really annoys me. I have asked her on countless occasions nicely and politely to not do it and she dismisses me, tonight I saw her go to do it and so I shouted "Mum put on your shoes if you're going outside!!

Cue tuts and huff, which I ignored and carried on as if nothing had happened. When she wasn't getting a response, she then went into major huff, stood silent as if she was about to break into tears, wouldn't answer any questions, turned her nose up when my dad or I tried to talk to her... Then started telling me that I had ruined everything by ranting at her. She Then predictably walked out. She has always walked out / hung up the phone etc when she feels hard done by so I didn't think anything of it. She always comes back, I always hate it.

Frankly I have had a difficult week and her overreaction was totally unjustified so I told her to stop feeling sorry for herself, I hadn't been unreasonable. I have tremendous sensitivity for her condition and would never say anything to deliberately upset her, however I admit I spoke to her in exactly the same way she would have spoken to me (when I was twelve, which is how she often talks to people, which I am well aware is where I get it from) and only because I have bitten my tongue about bloody shoes so often.

She ran out to the car upset, no tears though, I kept asking why she was so upset and all she could say was because I was ranting at her and had ruined everything. The only way we could get her to come back in and be reasonable was by saying have a glass of wine (which I am certain has been a contributing factor to her condition) after which she was absolutely fine as if nothing had happened.

So please people, help me out here. Was this her or was it her condition? I understand she feels vulnerable but can dementia exaggerate certain aspects of people's personalities or mean that they overreact to situations?

I'm sorry for the long message, this is all very new for me and any advice that you can give me will help me to be a better daughter as we all come to terms with this in the future.

xxx

[QuintessentialShadows]

You have my sympathies, it is not easy dealing with parent/relative with dementia. My mum has been in a carehome now for three years, she has levy body dementia which is slightly different from vascular dementia. In short, it means her memory was slightly better, but her interpretations were off by a long way. In her it seemed like her memory was like a filing cabinet where the folders had been mixed up, randomly, and where files that did not belong there had been added (like she would think other peoples memories were hers, or films she had seen were her own experiences).

On an emotional level, she was like a caricature of herself. Highly strung, and huffy. She would rant and rave. She would get upset for illogical things. Like, I suggested I carry the microwave up from the basement so that she should not have to climb the stairs down to the utility room every time she was supposed to reheat food.
At the time we were trying hard to make her accept meals on wheels to make it easier for her. She was no longer able to shop and plan meals and cook. Fried eggs and porridge became a daily staple. But, to heat the meals, she needed to use the microwave.

Her reaction to my suggestion? She took all the photos she kept on the free part of the kitchen counter (where the microwave were to go) and threw in the bin. She slammed the bedroom door and went to bed in tears.

I think on this occasion it was not just the microwave, but her realization she could not cook anymore.

She had tried to bake an apple cake, and just dumped the ingredients on a baking tray, not into a cake tin, and did not understand why it was flat like a pancake!

I think sometimes their reactions are so strong because they are frustrated because they get a feeling that there is something they do wrong, or cant handle, or feel incompetent about.

Please try to not take it to heart.

[nevergoogle]

sorry to hear you are going through this. never easy.

what I would suggest is that you maybe need to let the whole 'shoes' thing go. like you say, she always goes back out with bare feet. Now is not the time to try to relearn new habits.

but yes, she has overreacted. but it's likely something she doesn't have much control over.

[isitsnowingyet]

The only useful thing I can add is that possibly alcohol can make the dementia worse, as I noticed considerably if my MIL (who suffers with Alzeimers and is on Aricept) had more than one glass of wine. Not sure this is relevant to the scenario in your OP. Also, we noticed personality changes for about 10 years before the diagnosis of Alzheimers was made. Very hard to live with, but with MIL the progress of the disease has been quite slow, which is a good thing, as she is still able to enjoy life on a day to day basis. She is treated much like a child though, as that is just how it has to be at times (eg she can't decide what to eat in a restaurant and wouldn't be able to choose etc) which is a lot harder for my DP as it's his Mum. I wouldn't feel too guilty about your row, as tomorrow is another day

[woodlandwanderwoman]

Thank you so much, this really helps. I said last night to her that it wasn't worth getting upset over, but I realise now rationalising doesn't always work.

I don't know whether to take the soft approach and deal with these situations on the basis that it's her condition until we know otherwise, or whether to be completely normal to help her live within regular boundaries for as long as possible. In this case what went through my mind was "you know how you have to take your bloody shoes off, we have years of heartache ahead of us all, this is so simple that it just isn't worth it". That's what made me upset, there is so much worse ahead.

You're right though, I had treated her like a child (after a thousand times treating her like an adult on the shoe issue failing) and she responded like one. Thing is, this is a flaw I am aware of in both our personalities that I hate so it touched a raw nerve. That's why I can't understand if it was her or her condition, I think it is both.

i am very cautious not to put her in situations that would now be too much for her (or that I would worry about). For example, I don't let her look after DS alone, I always make sure she and Dad come together. Even when i am there she walks across the road without looking properly and he has little accidents when she is with him. She is too single minded now not to wander off and do something. A recent example was when they babysat and she spent an hour looking round the house for wine (it was in the fridge) before sending my dad out to buy her some, forgetting that they were there to babysit and that was all she talked about when we got home.

The alcohol is a difficult issue. She ha always drank far too much but not in an uncivilised way. I have no doubt that wine is now a crutch to her and on many occasions I have told her that I think the effects of her dementia are worse after she has had a drink. She has listened but it hasn't stopped her, so I have taken the approach of picking my battles and trying not to lecture. She has virtually given up smoking as a result of the blood pressure which is great after so long and you can't take away every pleasure. So when she is with me I only offer her spritzers and make them really weak... She knows better than to ask for the stronger stuff

I agree I have to put this behind me but I feel I have learned another hard lesson from it on this horrible journey. I need to be more sympathetic to the behaviour changes, it's just so frustrating when you see someone who has always been such an adult rock in your life regressing into a child!! Thank you for your support and good luck to you all xxx

[woodlandwanderwoman]

Actually can I ask another question... In the early stages how do you deal with a situation where someone does something in differently to how you feel is best, particularly with regards to DC? Do you explain that another way is better or what the consequences could have been or do you just let it go?

I am worried that by saying anything she is becoming over sensitive to my "criticising and ranting" at her all the time and a similar situation to the shoes will happen again. Yet without saying anything i feel I am not giving her the chance / space to do as much normal stuff as she can for as long as possible. Or worse that an accident could happen.

Where is the balance as the number of things I see is of course increasing!!

[Needmoresleep]

It is so sad to read this. Do join us on the longer thread. Not helpful but dementia is a slow bereavement. Things are never going to go back to normal, but with a bit of experience and luck things can be managed so your mother is happy, and therefore you feel better.

My mother is probably between early and mid stage Alzheimers. Like isitsnowing the personality changes appear to start long before diagnosis. My insight has been to understand how stressful and depressing it must be to struggle to remember and cope. My mother says it is weird, like being in some sort of fog. The conflict can be worse in the early stages when someone is really fighting to keep control, but my experience has been that it can then improve as they gain acceptance and start to relax a little.

Advice for what it is worth:

1. to try your best to manage round problems. Quickly suggest she might put her shoes no when she goes outside, with some reason she will understand, eg "that someone dropped a glass outside and you suspect some might still be there", ie that she is not at fault for forgetting to put shoes on outside. You get better at spotting when someone with memory problems is hiding something. My mum is supposed to provide her menu choices a week in advance, and was being chased by the management. She says she prefers a "surprise". I reckon she is worried she wont remember what she chose, and explained this to the management. All fine. She gets to eat what she is given, a small price to pay for not being embarrassed in front of her peers.
2. try to avoid confrontation, or drawing attention to forgetfulness or repetition. It is no win. Your mother gets upset and lashes out. Dementia takes away social constraints, so it can be horrible. Your mother happily forgets and is able to switch her mood, whilst you continue to feel bruised.
3. be clear on boundaries, when important. In time, and if you are willing there will need to be a role reversal. To a large extent, especially on admin and care, you become the adult and your parent the child. If you can negotiate Power of Attorney, a move to a sustainable setting etc, these will serve you well in the long term. It is easier than try to sort out mess later on. At the same time try to promote the independence she is able to maintain.
4. fibs are useful. Getting the right "explanation" for actions, so you are not in the firing line. Eg my mother does not have a cheque book because "the bank says so", not because I was sick of clearing up the mess caused by her giving away her bank details to people who phoned offering "TV protection".

It must be really difficult to have to have both cope with your mother's decline whilst you have a young child. Mine at least are teenagers and able to choose to adopt a good natured approach. Dementia creates so many challenges, not just practical and care, but the need, as you describe, to renegotiate your relationship and, effectively, confront aspects of the existing relationship and also relationships within your immediate family. It should in the end make you a better and more thoughtful parent, as you will be more aware and so less likely to simply repeat aspects of the parenting you received, but the process is not much fun.

[christinarossetti]

I've only got a moment, but it sounds like the trigger for your mother getting really upset was bring spoken to as though she were 12 and being told that she had done something wrong.

Pick your battles (what's the problem with walking round the garden in bare feet?) And avoid pointing out her mistakes would be my advice.

Best of luck.

[woodlandwanderwoman]

Needmoresleep, thank you, you have brought tears to my eyes in so many ways x at least the benefit of having beautiful little DS is that he is happy and innocent and brings so much joy to all of us (especially mum... First GC).

This is the first time I have ever been able to talk to anyone about it properly as I don't know any friends going through the same thing, our family is only just starting to accept it but as you say still struggling to retain some control and I worry that by saying too much to them I am talking up the problem and not giving mum every chance we can.

Who do you talk to, how do you learn how best to manage relatives with dementia? I will join your thread, I can't tell you how much this has helped me, thank you xxx

[woodlandwanderwoman]

Christina, I know it's small but whilst DS is so little i worry about him picking everything up that comes in on people's feet. He once choked on a piece of gravel in the kitchen and that is something I never want to go through again. I have gently explained this many times :-(

[Bluebell99]

I think you were overreacting about the shoes. I have read what you have just said about your ds choking on a piece of gravel, but still think you should let the shoes thing go. My ds choked on a piece of cut up plum, which was terrifying and unexpected as he was 4 at the time. The chances of your mother bringing something into the house on her feet is small.

What is happening to your mother must be terrifying, particularly for her, and you need to let the small things go.

[sleepingdragon]

You have had some great advice here, the only thing I can add is about dehydration. My grandma had vascular dementia (but believe this applies to all dementia). She had an infection and ended up in hospital having fluids by an IV. Once she recovered from the infection her cognition was much better than it had been in years. We were told that dehydration has a big effect on peoples cognition, especially for people with dementia. We made an effort to encourage her to drink lots of fluids (cups of tea together, buying her favourite juices and squash and reguarly offering drinks)to prevent her becoming dehydrated again. Your post made me think of this with your mum's alcohol drinking, as that must be dehydrating. Your mum sounds way more headstrong though so I'm afraid I don't have any tips of how to encourage her to drink more non alcoholic fluids!

[woodlandwanderwoman]

Sleeping dragon thank you, that it excellent advice. You're right, she doesn't hydrate (and actually very much pooh poohs drinking water as a "fad") so I will have a look for an article that I can show her as an independent suggestion of what can help. Anything is worth a try.

The shoe thing is firmly behind me, one of the reasons I posted was because I feared it may be one of those moments of realisation that you have to go through to move forwards and I think it was just that.

As someone with no experience of deteriorating mental illness it is so hard to know what to look out for and this has sadly given me another new level of awareness but that's what Mum needs. Thanks again everyone.

[CMOTDibbler]

I think the beginning stages of dementia where so much remains normal is very hard - my mums first signs were her language loss and personality changes. For sixty odd years of her life, my mum was the calmest, most peaceful person you could imagine, but the last time she had alone time with ds (6 years ago) she screamed at him for chewing the zip on his cardigan .

Unfortunatly, personality changes are very common and can be the most apparent thing from an early stage - and you can't fight it, just manage it. So a gentle reminder (not a nag or explanation) to put shoes on off 'because there was some broken glass out there, don't want anyone to cut themselves' each time will help.

[Needmoresleep]

Thank you as well.

I think you are right about the shoe thing. Sadly as your DS achieves new milestones your mother will lose skills. Your awareness of this will also come in stages. Like realising you can no longer explain why you don't want shoes worn in the house.

It must have been a challenging year. A baby is one thing but your mother's problems as well, and presumably the need to support your dad. If some of this is showing up as a desire to be extra protective of your son, you are entitled.

In terms of information I found it useful to attend as many of my mother's appointments as I could. Her memory test, showing what she had lost and what she retained was fascinating. I quizzed as many people as I could. Even people like a priest/vicar will know about local provision and a good GP is invaluable.

The Alzheimers Society is good as is their forum.

In the short term I would try not to challenge your parents too much. Being there so they could ask for help should be enough. At the same time I might look at alternatives such as sheltered housing. Ideally they could move to a setting where you dad can be supported as he supports her over the next few years. Only when you identify something do you consider how you might propose the idea in a non threatening and supportive way.