Living your own life

[Koala2]

Hi - has anyone found a way to do this whilst also caring for a parent with dementia? (Currently, weekly visits with ad hoc support in between). If so, what does this look like for you?

I think most people organise some sort of paid care if they want to live their own lives and not want to just be a carer for an elderly parent.

It's hard and I genuinely don't see how you can a) live your own life and b) be a carer to a parent with dementia.

Sorry not much help.

Is the person at home and with carers or in a specialist home? Do they live alone or are you also supporting their partner? Was much easier when we finally made the decision to move her into a home. I worried a lot less.

Caring can be anything from seeing the person a few times a year and handling their finances and supporting decision making with POA to 24/7 living with them and doing intimate personal care.

Which end of that is the care you're doing?

Dh visits three nights a week but there are four in his family so alternate times and they pay for a carer mid day (two come at other times government funded) its tough

Similar here @Koala2 . Look for a pattern in the ad hoc visits and if possible get a solution to those. Sometimes though you just have to be somewhere else- shopping, theatre, holiday… FIL (not dementia just very needy, lives with MIL who has Alz) called us the other day when we were 2 hours away sofa shopping. He wanted his warming plate turning on. Sometimes you just have to say you’re not available to swoop in for every mortal whim.

Thanks for the replies. The situation is DF, now with own serious health issues, caring for DM who has dementia but refuses any external support or respite. DF increasingly not able to cope with the mental (and occasionally physical) challenge of it all. My role is moral support and weekend distraction with some practical assistance thrown in. But trying find a way to live one's own life - whatever that is - alongside being responsible for this is hard.

External help is the only way ime.

Your situation is the hardest of them all. It is much less complicated and becomes apparent MUCH earlier when the person is living on their own. I’m so sorry you and your parents are in this situation. I think the best you can do is campaign to get them to get external help in: in DMs lucid moments tell her DF needs it because he is struggling with all the things but won’t say, and persuade DF they both need it. IME though it will still be very hard until there is some kind of crisis point (in two cases in my wider family going walkabout in winter in a state of undress and getting lost).

You will need external help. Start now. Insist.

I began with things like shopping, and ended up doing personal care, no 'strangers' coming in. It took four years of my life - and that's a short duration for carers, some people have it to do for decades.

This refusal to accept outside help really gets my goat. They have the money to buy in care but will not accept it and would rather burden their family.

FIL in assisted living depends on DH for shopping, laundry, appointments and anything to do with MIL in dementia care home - usual daily calls relating to falls and fights, BIL for all finance related matters. These things take time out of everyone's daily lives. He is given medication by staff at his assisted living and has a once weekly visit by home help who assist with some laundry and shopping but just one afternoon per week. Its taken us a year plus to get all of this sorted.

This arrangement would be ideal. Thank you