Struggling to cope with parent's dementia and feeling myself retreating

[sunflowerwater]

I'm not really sure why I'm posting this but just looking for thoughts/advice/support. My parents are early to mid 80s, my one parent has mixed type dementia and my other parent is in relatively good health but mental health really struggling from the impact of being a carer. I have 3 siblings who in reality are taking the brunt of things. The behavioural impact of the dementia is the biggest difficulty currently and day to day it's really tough and seems to have taken a massive downturn over the past couple of months. There are a number of really complicated situations from this but they are still trying to maintain huge independence.

My problem is, after always being the closest of families, I'm retreating. I've had a really difficult few years with a number of big things that have taken it's toll on me and I'm trying to hold down a full time, intensive job and we have two older teens. But in reality my retreating is from not knowing how to cope. Not knowing how to deal with the situation. Dreading going round or even calling and getting anxiety attacks from the thought of it. I don't recognise the parent with dementia now. They feel like a stranger and selfishly, I can't deal with it so I'm burying my head. I feel like I'm grieving before it's happened and I know I'm needed. I'm normally the rock and the sensible head people go to - I just don't know what's happening to me and I know I need to snap out of it.

I have no advice, sorry. Just wanted to say I feel desperately sorry for you

If you put yourself last and were fully present in your sensible-fixer-adult-daughter role, before you suffered your own MH crisis and killed yourself through stress, you'd be futilely propping up a sinking ship. You've described two elderly people who both have health needs and are in a pretty bad state but the killer here is they want to "maintain huge independence". At the stage they're at, realistically they can't. It can take a crisis to precipitate change with parents like that. You stepping away might allow a small crisis to happen so they accept carers/care homes/whatever is needed to allow you to be a caring daughter again without the weight and responsibility of their day to day needs.

Oh wow this cut deep and you saw through the situation quickly. This has essentially been my line to my siblings, and I feel awful for it but I've said we're tying ourselves up in knots trying to find any kind of solution to vaguely help but at the moment, all options are a no go. They aren't in a place to accept they need any other external help and what that could look like. If I'm honest, they don't really see they are elderly I suppose. Still have very unrealistic expectations. So I've come to an acceptance that it's a wait and see situation that we can't fix, until there's a mini crisis. I'm not wanting that at all, but I just see all this time and energy from 4 of us in circles for an unsovelable problem. And the dementia loop creates even more unsolveable problems in a giant circle. It's exhausting. My DH says the same as you that I'm protecting what I need to and I can't do it all. But my guilt says my siblings are doing so more and I love my parents dearly, and they've done so much for me.

I’m just at the beginning of this and it sucks. My usually active and mentally sharp dad ended up hospital with pneumonia recently. My mum, who has dementia, was home alone and I was shocked by how far she’s regressed. Without my dad she fell apart and begged me or my sister to take her to our place. I have a tiny two bedder with no spare bed and my younger child free sister with a 4 bed house refused to take her. I ended up trying (and failing) to sleep at my parents’ place on a sofa and babysitting my mum until my dad was released. I had to go home to feed my dog get some sleep. When I got back to my parents’ house the front door was open and my mum was nowhere to be seen. Luckily a kind neighbour walked her back to the house but it was a scary moment.

I’ve deceived I need to put boundaries in place. My parents hate spending money but they’re going to have to look into respite car so my dad doesn’t neglect his health and so they have a backup plan if there’s another emergency. I refuse to be the default caregiver because I’m the oldest daughter with the ‘less important’ job.

The problem @sunflowerwater is that any crisis probably won't be mini. They ate usually catastrophic and trigger a chain of events. I liken it to being on a roller coaster you can't get off.

Are all the legals sorted - POAs? Have they had care assessments? Is there a plan in place for what to do when things do go wrong? All these things help with feeling more in control of an awful situation and the constant fire fighting.

Also, look up anticipatory grief. That's what you are feeling. You can get support for that.

You cannot hold up a sinking ship by throwing a rope around it - you’ll get pulled down with it.

So, it sounds like your parent with dementia has care needs but the second parent refuses to allow help to arrive unless it’s from you.

Thd only thing you can do here is a) call ASC and ask to speak to safeguarding adults and share your concerns - be VERY specific especially if you have details of times where it’s just been lucky that your parent with dementia hasn’t been hurt. Have the climbed out a window? Wandered? Eaten something they shouldn’t have? Nearly drowned in the bath? No eating or drinking enough? You could ask for a care and support assessment (and they could make a gesture interests decision based on your parent with dementia potentially lacking capacity to understand their care and support needs) but I’m guessing the other parent will turn this opportunity down - so safeguarding will be the only way ASC will be able to get their foot in the door, I think (if there’s legitimate safeguarding concerns)

Your other option is to let go of the rope and allow the set up to fail (and it will). Your parent with their mind still fully intact is making unilateral decisions that then need you to shore things up - this is unfair and selfish.

Your other option is if you or someone else who isn’t the ‘well’ parent have LPA for the parent with dementia - it would have to be at least for Health and Wellbeing.

This was PIL to some extent. Head in sand, cross that bridge mentality. Pots of money they wouldn’t spend. The inevitable crisis (which resulted in them straight on the phone to us an hour away) was a broken femur after MIL fell. She now has dementia and after FIL died, went into a home where the money they had scrimped to pass down to GC is now burning away.
Today is the best they will ever be. Ensure POA is in place, step away and let them eventually join the A&E masses, and ward of beds full of other oldies who have failed to prepare or pay for help.
And never ever have them into your home to stay ‘for a while’. No decent parent would do that to their adult DC. Your sister was quite right to stand her ground there, I’ve seen too many friends end up on antidepressants this way.
It’s miserable, it’s stressful. But in 37 years of nursing I’ve seen this situation replicated by the hundred of thousand, and increasingly to be expected if modern medicine persists in prolonging life that would previously since naturally expired.
In our experience, the whole thing has left a very poor legacy.

Been there as an only DC with both DPs developing their own respective types of dementia. They are now safely in a care home but my career, mental and physical health have all been severely impacted.

What I would say is that your relationship with your siblings will outlive that with your DPs. Have honest talks with them about what you can and can’t do and acknowledge the extra they are doing. Maybe take on administrative tasks like bill paying, online shopping etc.

How sad that you"re advising this. I know first hand also, that this is from a caring point of view. My dad landed in a care home after we became unable to cope. But it was years. ❤️ I very unfortunately agree with you. Much respect, before im slated.

I’m 8 years in. Parents in their 80’s, mum has advanced dementia and dad, although in relatively good health struggles and relies on myself and my sister too much, he still buries his head in the sand and it’s a constant battle to get him to spend out his huge savings on extra care. My sister and I have been ‘pouring from an empty cup’ for years now, especially me. I work less hours than my sister so it falls upon me to always be the go-to person but like you I have many of my own issues which have caused so much extra stress and I have young adult dc still living at home with their own day to day issues which need dealing with.

Sadly we are part of the sandwich generation, still working, often still have dc living at home and now with the added burden of elderly parents who are living longer but in poor health. It takes a huge toll on everyone.

Early in the journey I was advised to step back and let that small crisis happen in order for my parents to realise they need more than we can offer but I didn’t, I carried on regardless and I am now paying heavily for that (my physical and mental health have very much suffered).

I’d take the advise of others and step back, it’s so much easier said than done, I know but if you don’t it will take its toll and sadly it will be on your health.

Good luck OP. Dementia is a wicked disease and I wouldn’t wish it on anyone.