Burnout- Caree Doesn't Understand

Carers' health and wellbeing
1

Hi Guys,

It’s been a little while since I’ve put a new post up, but I needed a little bit of advice on how to handle a fairly delicate situation.

Many of you know my Gran suffers from Motor Neurone Disease and, up until the end of June, I was her main carer from since around this time last year when her symptoms first started to really affect her mobility (with the exception of carers that started to come in to the house from March this year onwards- useless as many of them were). She has now gone into a nursing home and, though there were teething issues at the start, she’s generally having all of her care provided round the clock now. Her mobility has declined terribly, so she is now confined to her bed, except for when she needs to use the commode. Obviously, this is hugely distressing to witness, but that’s another issue for another time.

My issue is that, since her issues began, I’ve not had a break- I’ve had the odd day where I’ve not visited her, but she basically makes me feel bad if I try to take more time for myself. Of course, when she was at home, I wouldn’t have dreamt of going away because it wasn’t feasible- I was doing food shopping, cleaning, general day-to-day tasks and helping with her mobility-related issues almost every day. Now she is in a place where her care needs are met and whilst her condition seems quite stable (i.e. no breathing issues as of yet), I want to have a break away for a few days (in the UK in case something unexpected does happen and I can then rush back, if needed). Thing is, I keep mentioning how tired I am and how much I need a break, but she fobs me off with things like ‘well, I never had a holiday for 40 years’. It completely invalidates my feelings and makes me feel guilty for even bringing the subject up.

I managed to clear her house, when she moved into the nursing home, that had 50 years’ worth of belongings, in the space of 2.5 weeks (pretty much did the whole thing by myself, with the exception of my fiance loading bags into his car for tip runs). The house was council so it needed to be cleared quickly- that alone was enough to make me need a break because I only took one day off work in that whole time- the rest I cleared and sorted in between my full-time employment and constantly visiting Gran at the home to make sure she was settling in okay. Surely, that was enough to ‘allow’ me to have a break, let alone the months of stress and upset involved with the actual caring role itself?

Yesterday, she was inundated with visitors at the care home- several different family members. They all came one after the other, so she never had a break or a rest and looked quite ill by the time everyone left- I said ‘If I’d have known you’d have so many visitors, I wouldn’t have come’ to which she replied ‘I prefer it when it’s you here’. It’s a lovely compliment to have received because it obviously shows she trusts me to be able to accurately assess her current state when I visit (i.e. if her speech is really slurry, I know she’s talked too much and is getting tired) and I still do the general ‘care admin’ role so I get what she’s saying. However, it does make me feel really trapped. I thought that, once she’d moved, it’d give me a chance to step back and try to attempt some semblance of a ‘normal’ life after being away from other people that I love and care about for so long. Apparently, that’s not the case and I don’t have the heart to ‘stand up to her’ because I realise she’s done a lot for me in the past and I am basically refusing to support her when she clearly needs me to be there (emotionally).

I really don’t know how to get around this. If I carry on this way for much longer, I don’t know how my body and mind will cope. I have been pushed so far beyond burnout, I am totally lost.

Note: My fiance has recently started a new job and he can’t take time off until his new staff are trained well enough to be able to cope with the workload whilst he is away. If this were the case, I could use the excuse to my Gran of ‘he needs a break from work and wants to spend time with me’ and she’d accept it- he’s the only one she will accept my being absent from her for (I think he’s the one person she feels guilty about having ‘taken me away’ from).

Really appreciate thoughts on this situation, guys!

2

Hi Broostine,
(interesting pen name by the way!)

I don’t think you should discuss your need for a break with your Nan, I think you should just calmly announce, preferably at the end of a visit, that you are going away for a few days. Arrange for other relatives to visit her whilst you are away, I bet they will tell you she was fine!

If you feel better with an excuse, then tell her a “kind lie,” either pretending that you are going away with your finance or that your finance is worried about you and has arranged for you to go away.

In preparation for your break away, reduce you visits, maybe have one or two days each week when you don’t visit, but someone else does instead.

Remind yourself that she is well cared for, that she will be benefit from a refreshed you and that if you are burned out you will be no good for anybody.

I appreciate that you feel indebted to her, but that shouldn’t mean total self-sacrifice. You are equally important.

Melly1

3

Certainly you need and are entitled to take a break. Your gran is being taken care of 24/7 so you don’t have to arranged care in your absence. I like Melly’s suggestions.

4

Plan a break, just you, once the kids have gone back to school, prices drop dramatically. My first break for years was staying in a Travelodge or similar in Devon. It was a really cheap deal, I could eat, read, sleep or walk or shop. Only when I was totally alone did my body tell me how exhausted it was. My husband had died a few months earlier, I had a son with LD and a housebound mum, I’d “soldiered on” for far too long.
Don’t think of this break as a holiday, but just for rest and relaxation. Take a notebook/diary and write down your feelings, and your plans for the future. At last you can plan a life for yourself again. Nan must learn to live with you taking a lesser role in your life. When you get back, make plans for a proper holiday together, and for your happy future together.

5

Hiya,
You don’t have to justify taking a break to Nan, us or yourself. A break is needed so take one. Nan is in a safe place and yes, tell lies if you have to but get yourself away for a bit. Have you a girlfriend who would accompany you for a long weekend or a relative somewhere that you haven’t seen for ages. Or do as BB did and take a long relax at a hotel on your own, Don’t just stay at home. Far too close for you to really relax and chill out. Nan will be fine and if she gives you an earful when you get back just let it float over your head.
Remember the idea of an entitlement for a holiday is alien to a generation now dying out. They just didn’t have holidays as the current generations think of them. My parents’ idea of a wonderful holiday 55 years ago,was to spend a week in a tiny caravan in a field 30 miles away from where they lived, halfway up a mountain and with 1 toilet and 1 village shop for facilities. They sat, read books and enjoyed the view.
So Nan may not be understanding at all that it is a break from caring for her that you desperately need. Why would you need a holiday after all she didn’t have many.
So, if you have to, invent an old friend who needs you or has begged you to visit, invent a course you have to go on for work. See if someone will visit Nan while you are away (brief them as to where she thinks you are going) and leave your fiance’s phone number with the Home, not yours, so he can judge whether any calls from them really need your immediate return.
I also agree with the suggestion that you gradually introduce more and more days when you don’t visit. It’s a mistake to let Nan expect you every day. You have to reduce her expectations. She needs to rely on the Home facilities more not just you or you will never have time for your own life. You are letting her develop bad habits!
KR

6

Hi Guys,

Thank you for all the replies. I have thought about making up a ‘work wants me to go away for training’ etc. Thing is, I’m a hopeless liar- I can’t bring myself to do it.

I think, if Gran’s condition was going to be for a long time (i.e. 5 years or more), I’d be more inclined to whittle down the amount of visits I make, but it’s likely she’ll be gone in less than a year- I’ve felt the ‘not being there’ guilt before when my Mum died 2 years ago and the guilt still haunts me. I keep saying in my head ‘if I’m there for Gran as much as possible now, I’ll not feel the guilt when she passes’. (Almost like a ‘suffer now so I don’t suffer later’ kind of deal).

Unfortunately, I don’t have any friends I could go away with (my only friend abandoned me after my Mum died because she didn’t like my Mum and had nothing sympathetic to say about her- she now has a newborn baby anyhow).

I think Gran is so non-empathetic because her younger life was encompassed by a violent alcoholic who never gave her any housekeeping money and she regularly throws the following in my face ‘I used to leave the house at 7am to take the kids to school, then go across the city by bus to get to work, then leave work at 5, get several buses to my Mum’s house to pick the kids up and then get home, cook the dinner for everyone at 7 and then carry on doing housework until 10pm’.

Add to this that she doesn’t think that the current Nursing Home are looking after her properly and you’ve got the perfect recipe for the guilt I feel at saying I won’t be coming the next day to visit. For example, (and I have seen this myself so I know she’s telling the truth), Gran will ring the buzzer when she needs the loo and the carers will come in, turn the buzzer off, tell her they’re busy at the moment and will come back soon- sometimes they don’t come back for an hour or more. Along with this, my Gran needs two carers to help her to the toilet and the home only employs one carer per floor to do the night-time shift. This is the highest CQC rated nursing home I’ve found so it’s pointless for me to get Gran moved elsewhere. It is like being stuck between a rock and a hard place.

There’s only one other relative that Gran will ‘have visit in my stead’ and that is her sister. I did say I wasn’t visiting today and she asked me to ask the sister to go up instead- which I was surprised the sister agreed to. However, this will be a one-off as the sister looks after my Great-Gran (she’s 101 with quite bad cataracts). There’s no way I’d be able to ask for a few days in a row.

Even in the state my Gran is in, I am actually scared of upsetting her. The last time I did something she didn’t agree with (it was when we were trying to get her diagnosed by getting her into hospital), she cut me off (actually shouted at me, telling me to get out of her house or she’d phone the police etc.) For trying to help!
It’s emotional abuse, I’m aware- I just can’t take the rejection or being shouted at or anything like that (childhood issues surfacing).

7

You would benefit hugely from some counselling. You have never been allowed to grow up, cut the apron strings, and do you own thing. It sounds like mum and nan have both given you a huge amount of guilt when YOU HAVE NOTHING TO FEEL GUILTY ABOUT.

You are now a grown woman who needs to be allowed to do what you want. Start by going away for a couple of nights by yourself. NOT with friends, but on your own. Take a book to read, and a notebook, to write down what you are feeling, what you would like for the future, etc.

It’s not that scary going away on your own, in future you are going to do all sorts of things slightly outside your comfort zone, by taking baby steps I’m now going Island Hopping in Greece with a friend soon.

When you go away for your first single trip, find somewhere pretty to go to, or somewhere you’ve always fancied going, about 50 miles from home. Stay in a B&B where the hostess can keep an eye on you, if a large hotel sounds daunting (although I prefer the anonimity of a large hotel). Once the children go back to school, the overnight rates tumble.

You didn’t ask nan to marry an alcoholic, did you?! That is something only she was responsible for! Not right to use it as a bargaining tool 60 or more years later on an innocent grand daughter!!!

8

Funny you should say that, BowlingBun- I’ve just had the MND Team Psychiatrist on the phone. Gran’s palliative care team referred me about 4 months ago and I’ve finally been booked an appointment.

I’ve just laid out the issues surrounding my ‘trapped’ feeling, amongst other family issues that have made things worse over the last couple of weeks (i.e. my auntie died on the anniversary of my Mum’s death and my fiance’s Dad had a seizure this weekend, which resulted in his taking a massive chunk out of his head and caused severe burns all down his left arm as the fit occurred when he was taking something out of the oven). I think this may be the start of having ‘someone to turn to’ that I don’t feel I’m going to cause more problems for by airing my own troubles, if that makes sense.

First appointment is on 4th September, so fingers crossed it does some good.

9

In total I had 10 carees over 40 years, the family dogsbody although the most qualified in the family apart from dad.

I can honestly say that counselling changed my life, but 30 years too late. I was always expected to do what others wanted, not what I wanted. Mum left me some money, and my husband had life insurance. Now I can buy myself special treats, I’ve just bought a Kipling rucksack which was much more expensive than my usual ones, but it’s really sad that I’ve just started doing things for me at the age of 67.
Be sure to keep part of your life just for you. My holidays are “non negotiable”. On day I was waiting for a taxi to take me to the airport, when I found out via an email that the carers hadn’t planned any carers for my son for the weekends I was away. I made a formal complaint to the carers and SSD immediately (at 11pm) and then flew away.

10

BB- I can completely understand why you’ve waited so long to think about your own needs first. I think there’s the selfish among us and the people like all of us on this forum who just can’t seem to put ourselves first until something ‘snaps’ in us and forces our hand into doing so.

I so wish I could get to that ‘snap’ moment.

11

It will come, if you cultivate it. Just put yourself first, even if it’s just sitting over a coffee rather than blowing on it to cool it because you think you should be somewhere else.

12

For some its a ‘snap moment’

For me it was more of an underlying awareness that I matter too. I deserve my time and attention too. It’s not selfish, it’s self worth and self preservation. Even once I married and had children ( a situation where it’s easy to lose self in caring for others) I kept some small things for my well being - a dance class, an evening out once in a while, and best of all for me, my part time work. I’ve never regarded it as selfish. If I wasn’t ‘whole’ I couldn’t give fully to my loved ones. I had to work out what the balance was. It only becomes selfish if the balance tips too much your way. Likewise if the balance tips too much to the caree that’s where the feelings of guilt and resentment creep in as you slide down the slope.

Try finding your balance, sounds like its tipped slightly too far away from you at the moment. What if Gran does go on for years more - can you sustain this level of care at this level of stress? I think not.

Hope this helps a little
Kr
MrsA

13

How are you doing this week?

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Hi Leah,

I’ve just come back to work after taking two weeks off (it all got a bit much for me so I decided to stop hoarding my annual leave days ‘in case I need them for a Gran-related emergency’ and just eliminate the work-stress for a while).

It worked.

Alongside seeing a palliative-specialising psychotherapist for a few weeks now, plus finally having some time to think about my situation, it’s all become crystal-clear to me. I cannot possibly do anything more to make my Gran’s situation any better/easier. She has a disease that is totally beyond my control and it is pointless to keep saying ‘what if X happens?’ or ‘what will I do when Y becomes a problem?’ The answer is just go with it and deal with it AT THE TIME.

Having a break from work has enabled me to amend the daily routine (I purposefully visited Gran at different times of the day so that she would get out of the cycle of expecting me at a certain time). Then I dropped the bombshell that, as of this week, I will not be visiting on Mondays and Fridays for the foreseeable future. I didn’t ask permission or just hint at the idea, like I normally would. I outright said it. She didn’t argue. To be honest, if she did, I would have stuck to my guns anyway.

Don’t get me wrong, I am still pained to see her like this (especially now because she’s exhausted all the time, can no longer speak coherently at all and her arms are starting to fail her, plus the introduction of using a hoist for dressing and toileting is horrendous). She is fed up of living and she hates the fact that her swallowing is now so bad that she cannot be fed much more than soup and yoghurt (the palliative team have softly informed me this morning that it’s now too late for her to have the PEG fitted, as she probably couldn’t stand the anaesthetic). So, looks like we are now nearing the beginning of the end.

I know I have to continue with my life after this reaches it’s horrible peak and I am trying to focus on that. I have started yoga in the evenings, completely cleaned and gutted my house from top to bottom, bought a whole load of ‘how to be happy’ and ‘calm’ type books and I have started to plan for the future. I have also stopped saying ‘no’ to invitations to things ‘in case something happens with Gran’. I still won’t risk an actual holiday (I haven’t yet reached the point where I can go more than one day away from her because of issues with the nursing home staff, but I have addressed these issues with the palliative team this morning and they’re going to follow it up so it’s all baby-steps at the moment). It’s not like the staff are abusing her, but some of them talk to her quite aggressively, they don’t bother to position her correctly (bearing in mind she cannot physically move herself around the bed at all to get into a comfier position and apparently half of them don’t know how to read simple instructions that I spent time writing up- just on the correct pillow positioning WITH A DIAGRAM and correct foot placement, as the drop-foot causes her feet to go numb which gets quite painful after some time). If I can get these issues sorted, there’s no NEED for me to be there- If I go to see her, it will be to bring puzzle books/books/treats or to just spend time together to try and cheer her up.

Overall, I’m in a much better place, mentally, right now- It is not selfish to take care of yourself (after all- nobody else is going to do it for you!) It’s survival.

15

Good for you! Today I returned to work after 2 or 3 days off to care full time for my son (I work as a freelance childcare provider). I needed a break from test results, medication and depressing news as well. I enjoyed it. My life is not about test results, depressing news, or life as a special needs mom and I need to remember that. He has been in hospital the past few days seriously unwell but is now home again.

It is crucial for unpaid carers to take a break. Yesterday I ate my dinner at home for a change and slept undisturbed during the day. What about your mother? Can she visit her or not? And I do understand you. Whenever my son has had surgery, I always insist on 1 night off to recover at home. I need to spend time with my daughter being a mom. We take it in turns to care for him. My husband does the night care and I work with him on his exercises and teach him.

16

Hi Leah,

Sounds like you had a much-needed break and it sounds like it’s done you the world of good :slight_smile:

Unfortunately, my Mum passed away a couple of years ago (a good few months before my Gran’s symptoms started). To be honest, even if she were around, she’d be more of a hindrance than a help, as she was a chronic alcoholic who crumbled at any sign of stress. My Gran does have a son, but he lives over an hour away and only visits for a couple of hours, once a week- he’s been less than helpful.
It sounds like you’ve got your head screwed on with how to handle juggling the rest of life with being a carer- a rare trait! :slight_smile:

17

Thanks. I went to work today for six hours. Afterwards I met a friend for me time! We went on a walk and looked at the shops as well. Then we saw a movie at her house and had tea together.