How to cope

[Blueskyandbirdsong]

DM has recently been diagnosed with Alzheimer’s Disease. It’s in the very early stages and she has decided she wants to go down the assisted dying route in Switzerland. We are all fine with that and support whatever she wants.
The problem at the moment is she is an absolute ball of anxiety, she is literally terrified she is going to loose capacity and therefore be unable to go.

Due to her past she is well aware of what advanced dementia looks like and it’s not a route she wants to go down. However her anxiety is starting to affect me. I want to support her and be there for her but I don’t know how to cope with it all.

She is currently hyper fixated on Alzheimer’s. Researching, reading, looking at trials etc etc. Fine but all this means she is up in the night worrying, having panic attacks, phoning distraught. She is in a lot of distress. I don’t know how to help her or myself.

She has been given lorazepam and is going to be taking an SSRI.

Does anyone have any experience of this? How did you cope and support her?

There is also my DD and I really feel for him. He is the one there 24/7 and it must be exhausting. Alzihmers is literally all she thinks/talks about.

I would have thought she’s already way beyond the exacting capacity tests and that’s speaking as someone who’s supported a friends parent through Dignitas in 2003 and has had a mum who had dementia over 25 years.

That probably sounded a bit harsh, my mum only died last Friday.

Practically I would suggest getting in touch with the Altzheimers charity for physical and mental support for all of you

Keep taking the lorazepam (DM) and remind her the bar for capacity is very low. Reassure her and don’t argue - that will agitate her more.

She’s got a good few years of full life yet before she needs to think about it - stress that and explain you’ll honour her wishes faithfully.

I’d get her onto the Alzheimer’s Society’s online forum (useful for you too) and not answer the phone at night.

Been there (twice). I know it’s hard. 💐

Do you think? She is recently diagnosed and her anxiety suggests she understands what is happening.

If she’s serious about going, she may need to go sooner rather than later if she doesn’t want to run the risk of leaving it too long (and not being able to). It’s a tricky line to tread. I’m sorry op, it’s shit situation all round. My mum ‘missed the boat’ as it were, left it too late, lost all her facilities, and languished in a Home for literally years. There was literally nothing we could do. Soul destroying all round. Seek support from charities that know their stuff. Support your dad, obvs.

I am afraid that this happens a lot, because the progression of dementia cannot be predicted and someone who can't remember clearly what they wanted, or why, isn't deemed to have capacity.
Ironically this situation can lead to someone choosing to go while they still have reasonable quality of life, which is also very sad.

Make her relaxed that that is a stage and a part of life that has to be accepted with normal life and you do not have to overthink about it. Keeping some assistance or a nurse with her would help because as the stages of Alzheimer upgrades, it leads to further difficulties which has to be managed.

How old is she? That might help her with trying to work out how long she might have (although very hard to predict)

The reality is that she is going to have to take the Switzerland option fairly soon. There is no way of predicting how quickly her dementia will progress, and how soon she will be deemed to have lost capacity. So if that is her greatest fear it can't stay at the theoretical research stage for much longer, she needs to organise it and have a timespan in mind. So my support would be aimed at helping her to do that.

I would want to do the same myself, having seen my own mother go through ten years of Alzheimers, the last seven years in a care home. But I am aware I would have to do it early, or risk it not happening at all.

Thank you all so much for your replies, can’t tell you how much it means. Can’t tell you what a relief it is to hear from those who understand.

@stayathomegardenerIm so sorry for your loss.
@Ohhelpwhatnow she absolutely understands. She feels like she is loosing her mind and it’s causing her so much distress. As @Purplecatshopaholicpointed out she does not on any account want to ‘miss the boat’ and she is terrified she is going to but at the same time, now would be too early. I’m also scared she is going to miss the boat, it would break everyone’s heart to see her loose capacity and not be able to go as we all know it’s absolutely not what she wants. As far as I know she is getting a lot of the paperwork sorted next week.

I know there are no easy answers. I just didn’t see this coming, I don’t think any of us did. To know I’m going to loose my mum in the not too distant future is so, so sad. She has spoken to the doctor today who has given her an anti depressant and anti psychotic which I’m hoping are going to make her feel better. Her anxiety is so bad it’s making her cognitive abilities worse. Things seem to have escalated very quickly from going to the memory clinic a few months ago to now, however her severe anxiety and distress is making everything so difficult.

We all just want her to live and enjoy what life she has left. She is so scared and almost childlike it’s heartbreaking.

The anxiety is likely a symptom of the Alzheimer’s. My father was diagnosed with this earlier this year and he’s very anxious about things. He was much more ‘go with the flow’ before…..

God, it is so heartbreaking. This terrible disease. I do hope that the drugs she's been prescribed manage to reduce her anxiety, which must be terrible in itself to experience and to witness.
There can't be an easy answer to the 'when' in relation to Dignitas, but I wonder if Dignitas itself offers any guidelines. If only it was possible for someone in your Mum's position to make a legal declaration while she still has capacity, saying that she wants her GP to decide when her quality of life has reduced to a certain level, and stating that she authorises Dignitas to go ahead when he confirms this. It would be less painful than the family having to decide the timing, and would avoid some of the pitfalls of unscrupulous relatives looking to profit. But we're a long way from that in the UK.

There are some countries that do that, I think the Netherlands do. You can submit the paper work but don’t have to go when you still have capacity. However as she is a uk citizen going to Switzerland she definitely needs capacity if she wants to go ahead. It feels like absolutely Hobson’s choice. It’s a terrible position for her to be in and it’s terrible for us to watch too. Either way is heartbreaking but I think worse would be watching her decline knowing that was the path she did not want to take. Dementia is the one thing she has always said she didn’t want to live with and ironically it’s where we have ended up.

We could learn some lessons from the Netherlands.
If I am ever in that position, I think I will choose to go early even if it means missing out on some OK months or years. But perhaps that's easy to say now.
Your poor Mum.

There’s some interesting research on keto diets for dementia, do you think that’s something she might take on board?

I am the carer for my wife with Lewy Body Dementia. Whilst there are common traits to dementia from experience each case is different. At this early stage, medication can make a significant difference to quality of life, so I would be pushing to get a clear assessment and medication. My experience is that this requires significant pushing at a time when as you say anxiety is high, but you need to establish who handles support for dementia in your area and who can prescribe. It varies by area. The McMillan nurse network can be really useful in helping you do this. you can google and find their number.

As well as medication, practically you can focus on enabling independent living. For example, emergency alarms and if she is agreeable tracking devices and potentially cameras.

I have no knowledge of Dignitas, so I cannot advise on this. I do understand her being scared, and you can help by getting her some non judgemental counselling which will help her develop her own thought processes.