How do we deal with taking a break? Do we need one?

[Julia B]

MIL has lived with us for 7 months, as her illness worsens her visitors have stopped, my fiancé and I have had 2 days(6 hours on each) away in that time, and after each time we've had to cope with massive depression, refusal to eat, dress, drink or wash.
I work full time, and feel like an alien in my own home as she will complains constantly that "the girls" don't keep the place clean (she is convinced she's in a care home that my fiancé owns, and that we go home, and that other people are there upstairs...). I've read about the suspicion (so many things have gone missing she says) and she now has no idea of time, day, can't follow anything on TV and refuses to visit anyone, not even her other son...who finds it hard so barely visits, not even to sit with her for a few hours so we could walk the dog together..
Her sister also has the illness, MIL thinks she's in a home for a while, when in fact she's back in hospital as the home she was in can't have her back as she wanders and is aggressive, MIL thinks she can care for her, yet refuses to visit and then won't get dressed for 5 days in case we ask her! She won't give me her laundry, she won't shower, and is now trying to hide/sneak her tablets away...
I sound pathetic, but it's so oppressive, we built her a lovely annexe, I try not to get upset when she won't eat, I have a fridge full of things to tempt her, fruit bowls and biscuit tins in her lounge, but she's barely drinking now and she's already had 2 UTI's. She's now waking up at 6.30, before it was 11, I have a son at uni, a daughter doing A-levels, and we haven't been for a meal out since January...
We're getting married in November, how do we stay away even for one night? If a health visitor arrives she is worse for days after, I don't know what we should or could do...I stay at work, I go to the gym, I walk the dog..I miss being a couple, I miss not listening for her watering the garden for the 2nd time in an hour, in her PJ's, help, please

 

[Grey Lad]

Of course you need and deserve a break. Dementia is a cruel condition for the whole family. I am sure others will be along soon to make helpful suggestions to your dilemma. This condition is so hard for us all.

 

[Julia B]

Thank you, my fiancé is amazing, so patient and we know we are lucky he can care for her and I can support us, and I do make her laugh, and I know we keep her safe and happy, just sometimes it's all a little much...I'd be firmer with her than he is, but that wouldn't work either, darned disease eh GL? Thanks again though, all the best to you.

 

[MerryWive]

Hi Julia, I really feel for you. I don't have concrete solutions but I wanted to say "hi" since I am also looking after my MIL and am finding it pretty hard going at times!

Our situation is different than yours, MIL is unable to walk so in a way that makes things 'easier'. She is non-verbal but shouts/screams/whines a lot. We have to do everything for her. We have been caring for her for five years. She lives half an hour away. We keep considering moving her to our house but it is proving very hard to get anything done what with all the other issues this disease brings.

We manage with myself, my husband and my brother in law taking turns to be with her during the day and then there are two night carers who take it in turns. We managed to get married and have a bit of a honeymoon as we found one really good carer who we could trust to stay with brother in law and keep things going.

In your situation I would hope your finance could talk to his brother and encourage him to help out a bit more. People are scared because they don't understand, but the more time you spend with someone with dementia, the easier it is to get into their world. If that doesn't work and there are no friends or relatives who could sit with her for a few hours, then consider getting carers in. You may have to try a lot to find a good one, ours was one out of about 30 different women. You will also need someone to take care of her during your wedding. We had that same carer come to the wedding and look after MIL, with escape plans in place in case of a screaming fit...... we were very fortunate that she was in fact well behaved all day and genuinely seemed to be enjoying herself.

 

[Julia B]

Hi Merrywive, thanks so much for your reply, we've delayed the wedding so her other sister from Ohio can be there, and I've invited her to stay with us too, so that gives MIL a nice focus (when she can). I told my fiancé he had to tell her sister that MIL has this illness, to give her a chance to visit..I know it's time we had a carer, to get her to shower without all the days of upset after, I'm so grateful you and GL took the time to "listen"..my own parents aren't well so I won't worry them about how hard I find this, all the very best to you x

 

[Rodelinda]

Hi Julia - I agree with everything that's been said: you both need a break and there seem to be some good suggestions about others helping. But in saying that I'm only trying to strengthen my own resolve to persuade my mother to agree to respite care (as she's been with us for 4 years and in that time we've had 2 nights away) and having done that to do something about it knowing that 2 minutes after she's agreed, she will forget again. all the best

 

[Rodelinda]

forgot to say in my last reply ...

Do it now rather than later as the longer your MIL has lived with you, the harder it will be for you to take the step and organise help and ways in which you can have a break.

 

[Beate]

Have you had a needs assessment and a carers assessment yet? If not, call adult Social Services pronto to arrange. Say they have a duty of care for a vulnerable adul at risk. They can evaluate and offer things like day centre, sitting service etc and also assess you for respite ie she could go into a home for a few weeks while you get married and on honeymoon. If you don't ask you don't get so get on the phone now - you sound exhausted.

 

[Julia B]

thank you Rodelinda, you made me chuckle, indeed two minutes later it's forgotten, you've been amazingly caring, only two nights away in all that time and here I am whining?? Get a grip Jules!!
Thank you, I needed to see how lovely people like you guys are doing, so kind of you to reply, all the best to you, I feel humbled xx

 

[Julia B]

Hello Beate, thank you for taking the time, I am utterly shattered but it's just me being feeble, so many people are doing much,much more... yes I think we had an assessment over 18 months ago, but she has deteriorated so much in the last month or so, I will ask again as OH says we are coping fine and that she won't like help...My sister in law to be is manager of a care home, but she hasn't helped really, busy lives. Thanks again though, very much, take care x