Carers Leave - Dementia

[RememberDecember]

Both my parents have dementia and the care and decline are both ramping up. I am organising everything, alongside teenage kids and a stressful full time job, and I feel like I am at breaking point. In tears most days at the moment, not feeling like I am doing my best for them, mourning their deterioration.

Friends have told me I should go off sick to get myself together, but I feel weak for doing this and I know that in a weeks time I am going to be facing the same situation.

Someone at work suggested asking for Carers Leave, which I was surprised to find is actually paid at our work. I don’t know how I feel about doing this, as it isn’t a specific one off event I need support with. But lots of ongoing things to sort out, to take them to. Is it being cheeky? I don’t want to feel guilty about work on top of everything else. Has anyone else taken Carers Leave to look after parents with dementia? I don’t even know how it would work, possibly a few days at a time or a week at a time as needed (with notice), the policy doesn’t specify it needs to be taken in any specific blocks. TIA for any helpful responses.

Hello OP, I'm sorry about your mum and dad. Have a good look at the policy. Where I work it's five days paid each year. So ok for an emergency but not a huge amount of days.

It is up to 12 weeks paid per year at our work. I’m not thinking of taking that amount though! I only know one other person who openly takes it for a parent with Alzheimer’s, I willl check what she does although of course everyone’s situations are different.

I’m aware this seems incredibly generous and too good to be true, I need to find out if they actually offer anything in practice.

Interested to hear if anyone has similar policy that they have utlilised to care for someone with dementia though.

It sounds as if you are approaching carer burnout. I would suggest taking a week and using the time to get things sorted out. There's so much to organise as a dementia carer and because a lot of it involves incompetent organisations, a lot of time is wasted duplicating tasks or chasing for people to do their jobs properly.

It can be like herding cats. Once you can get your care plans in place, it gets a bit easier. There are resources out there, but it takes time to track it all down and work it all out.

Also, find yourself a counsellor. The grief and conflict of caring for a parent can be overwhelming.

That's really good provision of carers leave, good on your company, just check the ins and outs of it.

Do not feel guilty for taking time to do the important things in life, and your sanity and parents are just that.

I would suggest taking two weeks to initially to a, have a rest and b. Do some of the organising. Organising without the mental load of work will be so much easier, and certainly less pressure.

Could you afford to reduce your hours at all? Even one day off a week means hospital appointments etc can usually be rearranged and if not, you can swap days without guilt (unjustified but j get it all the same) to facilitate this side of things. And it gives you a rest day if nothing else - this will be so important going forward for you.

Then your carers leave can be for emergencies, if your parents are sick etc which let's be fair will soon get eaten up. I don't think carers leave is really designed for longer term 'care' needs if that makes sense.

But overall, please don't feel guilty for taking time to ensure you and your family are sorted, well and not broken but trying to spin too many plates.

@unsync I already have carers in place but you are right that there is a still a lot of chasing and following up. Eg this week they were supposed to take a urine sample to GP but that got botched up so I had to go and do it myself yesterday (in working hours).

I feel like I am at breaking point. At this point, I think I could take a week off sick as it is about me falling apart as much as providing care for my parents.

I hadn’t considered counselling, but maybe that is something I will look into. Thank you for the suggestion. I have been focussing on the practical stuff.

I do want to go and look at care homes, so I at least have some options for th future. I’d like to do that in some time off, as I don’t feel like I can just walk straight back into work after doing that. I felt devastated the only time I went to look at one.

I don’t know about reducing days at work, it is not something that work are keen on and there is virtually no one who does this. It is really full on and demanding and I worry I would just be giving myself the same amount to do in less work time.

Have you talked to your line manager? I manage quite a large team and I’d be horrified if someone who worked for me was feeling like this and hadn’t felt able to talk to me!

I’d take a week off, sick leave or whatever. Take some time to rest, get some things organised. Talk to your line manager or HR about how the carers’ leave works in practice and what your options are.

If you are ill you can’t care for anyone else and what you describe is illness. “Breaking point”, “in tears”, “mourning“. It’s not weak to be ill in this situation. You probably need much more than a week off sick just now. Caring for people with dementia goes far beyond the practical. You’re losing your parents just as much as if they had cancer or something. Your work doesn’t care who does your job but if you carry on like this it won’t be possible for you to do it anyway. Speak to your gp, get a counselling appointment, tell your boss, ask for an occupational health referral or whatever HR can suggest.

It’s heartbreaking and horrendous. Look after yourself first.

I took paid carer's leave when I had a complete omnishambles with my mother (who has dementia). I also work only 4 days a week so I can sort stuff out with her on the other 3 days and still get a semblance of a weekend.
Honestly- who is the policy designed for if not for you? Are mothers who take maternity leave "cheeky"? Of course not- it's your right (plus it will also make you a better worker in the long-run). You are in a good position- many companies don't have this (mine only introduced it this year and it's not as generous as yours by a long way).
I thoroughly recommend you talk to your manager and then take off at least 1 week carers leave ASAP. Spread this between a 1) lie-in/ swimming/ general recovery for you (if you're crying every day you are burned out) 2) visiting your DP 3) care home visits/ financial planning for their future care needs (if above financial level to have to pay). It will be such an important thing to do.
You sound completely worn out, so many of us have been there, it's awful but don't make it worse for yourself by feeling bad about a few days carer's leave as per your work's policy... <big hug>

@RememberDecember On the carehome search, I used the CQC website and spoke to people who had local knowledge. I had a shortlist and lucked out on the second one. The first was excellent but seemed quite busy.

The one I chose was really homely. I was quite anxious about , but my parent had a wonderful time there whilst I had some much needed respite. It is run by a non profit company and they invest heavily in their staff and premises. They have a very good staff retention rate and pay above NMW. That might be something to look for where you are.

@EmotionalBlackmail I finally bit the bullet and emailed my line mgr yesterday saying that I wasn’t coping. I have never met him, don’t have 121s with him and he is based in another country so I am not really sure what his reaction will be. He said all the right things and said he will consult with HR and we are going to talk on Thursday. HR are based in US which doesn’t fill me with optimism that they will have a compassionate response.

I think I am going to make an appt with GP to look at getting signed off as I realise I need time to get myself together before I try and do anything more constructive with my parents. I’m no use to them or my own family (or work really) like this.

I’m glad you have spoken to your line manager.

American companies can be just as open to compassion. You’ve hit a point where you need sick leave to recover. Using carers leave in the future to help manage this situation might be what they want you to do.

Most of all I hope you start to feel better with some leave 💐

I just wanted to come back and update. When I look back at these posts, I can recognise what a dark place I was in. I have been signed off from work since then, due to go back in 3 weeks. Been having counselling and also made some practical progress in the time I have been off - different carers, more activities for my mum, looking at carer homes, joining support groups for dementia carers and also taking time for me to join a new (old) hobby which has provided some much needed sicial interaction and distraction.

for anyone reading this in a similar situation, please seek help for yourself as a carer before you reach burnout. You are just as important as the people you are looking after, and worthy of care and attention yourself. It is too easy to overlook our own needs, always putting them last, but it is not healthy or sustainable.

Thank you for the words of wisdom and support on this thread, even if I couldn’t fully take them on board at the time.

@RememberDecember I'm glad you are feeling better.

I've had a bit of an epiphany myself in the last few months. My elderly person is now in residential care, the most pressing house issues are fixed, it's been de hoarded to the point it has a normal volume of stuff in it and I've tackled the financial admin mountain to a reasonable level. I actually feel like I can breathe again and that what is left to do feels relatively managable. I've used my employers unpaid carer leave to tackle tasks and in retrospect I had a lot of time off sick over the summer with physical illness as I think I was just really run down and not able to cope with basic viral illness very well.

So for anyone stuck in the beginning phase of caring I'd say put your life belt on first. Use the resources available to you - paid/ unpaid leave, sick leave if you are unable to function at work due to the pressures etc.