Dealing with exhaustion and guilt

[oooohhheeeeeee]

Hi, advice needed please!

How do you cope with the exhaustion and guilt of dealing with an elderly parent?

MIL is terminally ill, it could be anything from a few months to several years, and since her diagnosis a couple of months ago one of us has been over to see her most days. We live around an hour from her and so it's a three hour round trip, and we both work full time.

We're starting to get physically and mentally exhausted from visiting so often.

However, when we suggest missing a day, she suddenly starts to feel really ill, or won't answer text messages, until we're forced to go over and check on her (when so far, she's been absolutely fine)

How can we balance looking after her with the physical and mental exhaustion that comes with it, if she won't let us have a day off? And if we did have a day off, how would we deal with the guilt if she really was ill, or worse?

She does have carers three times a day so she's not on her own, but she says they forget to give her her medication etc.

I understand completely that it must be lovely spending time with her son (and his wife!) but she doesn't seem to appreciate we have to work, look after DC, run our house etc etc etc as well.

She is moving closer to us soon, which will reduce the driving, but I think she will expect us to be even more at her beck and call.

I'm sure plenty of people have been through this, so any advice appreciated, thank you.

OP 💐 for the situation you find yourselves in. It’s just shit isn’t it? I think I have had to toughen up a bit and say no from time to time.
Its not easy but sounds like she is being well cared for, so no need to feel bad.and she is being unreasonable to try to manipulate you by not answering etc.
My MIL does this and DH tells me to ignore her. After a day or so of being ignored she usually becomes a bit more reasonable.
Can she use FaceTime or Skype, or can her carers help with that? Might take the pressure off.
You need to be able to take a break as it’s not sustainable as is.
Sounds like you two are being very kind to her, but be kind to yourself too.

She's in an awful situation, but no, you can't do a three hour trip every day. Apart from anything else (like exhaustion, your relationship with your husband), your relationship with her will suffer, and you'll find yourself wishing she'd speed things up a bit. Seeing her less frequently will help you enjoy her company when you do see her.

And don't forget - what happens when you're ill?

So, you have to be tough to get somewhere that's sustainable for you too. You have to start by saying "we cannot manage to visit every day", tell her to text if she has a problem, or even get one of those alarm buttons. If she won't answer texts, then I'd suggest a camera, so you can actually see she's OK - the suggestion might persuade her to answer texts.

With my father I put it under his control, and told him to email me every day, which he did. But he was very keen not to be any trouble, so he he didn't play silly games like failing to email so I'd go round and check on him.

(I used to try and go round 2-3 times a week - it was pretty well a three hour trip because although he was near to us, I could never get away in under two hours. Now he's in a nursing home, I go once every 3 days, for a bit more than an hour, until Covid, that is. And although I'd love to see him again, I can't deny that life is so much easier without the visits).

It’s a bad situation and I’ve been there.

She’s being cared for. I’d choose the days the career is there to have a break. Even just once a week. You can’t look after her properly if your not in a good way yourself. I’d find out exactly what time the carer is there and ring you whilst they are there and say you can’t come up because of XYZ.

Make sure the day before she has everything she needs so you know she is ok. That one day will make a difference and spur you on to be a bit more firmer.

This is unsustainable. You will get ill. As others say, reduce the visits- perhaps extra care visit for companionship every other day?
Are carers meant to ensure meds are taken? Check. They should keep records.

Thank you everyone, I know we've just got to be firm. It's so hard though isn't it...

Goodness , yes it is very hard.

Curiously, my sister who is usually much more softhearted than I am, was much better at managing my mother. DSis explained that the very elderly respond best to the treatment suited for toddlers.

Firm boundaries and consistency.

It's so much easier to advise when not emotionally involved.... you are most likely in it for the long term so it's it's important to find what is sustainable. Have the visiting cares text you that all is well and cut visits back slowly, ideally to provide have two family visits a week so she never goes more than four days without a visit.

Good luck. If you do nothing, it will only change when one of you become ill, and that is very likely sooner rather than later.

A relative of mine is like this. When she doesn’t get the attention she demands she resorts to phoning the emergency services or GP multiple times.
Firm boundaries is needed, stick to what you are prepared to do,
Also be firm with the carers as they may ring you when she says that she is ill.

Carers should be asked to prompt her meds. You must be shattered! Definitely reduce it. Might she benefit from a top up carer companionship visit too?

Sounds like you have done a wonderful job so far OP kind & caring, and I am very sorry that your mum is so poorly. But you need to look after yourself too, otherwise your health suffer.

Yes I agree with previous posters, you need to be firm, I know it’s difficult, but you can’t keep to that schedule, it’s completely unsustainable.

One of the things that helped me was finding that social workers etc exhibited absolutely zero signs of disapproval that I wasn't doing more. It's mainly those with no experience of caring for someone with dementia or severe illness that feel that family "should do their duty".

She does have carers three times a day so she's not on her own, but she says they forget to give her her medication etc

My advice (from having been in the same situation myself) is to get to know the carers really well. You need to be confident that they are good carers who are doing the job properly. If you're not sure that the current carers are up to the job, then change them. Once you're certain that the carers are competent, you can relax, as you know that things are being done correctly - you will then be able to cut down your visits to a level that works for you both.

Good luck, OP. It's a difficult situation, but it can be made to work.

Agree that good communication is vital

While my mother had visiting carers, we set up a WhatsApp group between the carers and the family members trying to coordinate, do that everyone could see any questions and the answers.

While we were concerned about medication, they mentioned that on WhatsApp for us all to see. Made phone conversations with DM so much easier when we could say don't worry, DM you had your medication at 3pm or whatever.

I agree with others that you need to be firmer. She has 3 carers in daily so is being looked after.

My advice, next time just phone the care agency. They be able to tell you if your mil taken her medication, if she has eaten, what her mood is like.

I find the phrase ‘I’m at work’/ I have a meeting the only thing that works really. Everyone from your MiL to social services will assume you are free to help if you don’t make yourself unavailable.

Yes, "I'm in a meeting". It's useful to cultivate in your mind the concept of a meeting with yourself. Mentally book a meeting to get something done, work, relaxation, preparing lunch, and fight off boarders by saying "I have a meeting". Or, if can't make that feel true in your mind, "I have a commitment".