Please help

[jojo2018]

Hi
I’m new to this forum so please bear with me.
I currently care for my mum who has dementia. I work during the week and so my OH has stopped working and stays home to make sure she is ok in the day. This has put strain on our relay- but that is for another day.
Mum is having really bad hallucinations where she thinks there is a doctor that lives over the road that is trying to kill her. She is distressed all the time and is angry at me for not going over the road to sort him out.
She says that he is shining lights in the house, coming in the house sometimes and making loud banging noises.
I really need help in what to say to her. The forums say ‘try to keep her calm, distract her or tell her she is safs’ But this is not working.
When we went to the memory clinic before we were offered an anti psychotic. I refused as I thought it was the wrong way to go. Has anyone had any experience of dementia patient using these anti psychotics? Or medication for depression?
Mum fake cries a lot also. I sometimes feel like I am looking after a child. I know that sounds harsh but I am being truly honest.
I am mid thirties, no children and full time career. I work 5 days and week and then take over caring for mum at weekends. She is still mobile, can still wash herself but has trouble with dressing, cooking etc
She refuses to even talk about a care home.
I’m at my wits end. Please help

I'm so sorry to hear you're going through this - I totally understand as am in my late 30s with no kids, running a business full time, and also struggle with balancing things while looking after my MIL. It's a bit different as my OH and I are with her only 4 months a year and the rest of the time she has carers - but the pressure and stress on work, our relationship, and our sanity is there for us too and especially during the time we are living together as you are. It's sometimes frustrating as we don't have kids yet have a similar burden - my MIL has become increasingly like a child in many ways. Someone posted about considering the needs of all of us - not just the person with dementia - and that was amazing advice for me when I have posted here before. It sounds silly but it was like a revelation - the fact that it was ok to think of myself and my OH and find a compromise - not just only think of my MIL (as the most vulnerable) no matter what the cost to us. Now I try to think about finding a middle ground between all our needs, often having to push my OH to see it the same way as his tendency is to be self-sacrificing when it comes to his mum, but then get incredibly stressed and frustrated about it.

The home issue was taboo - she would threaten suicide even when we brought carers in - but now we've reached a point where we are going to try and make it happen. We decided in advance what the criteria were around making the decision - based on when she stopped being able to do the things she loved at home and / or had become a safety risk - and both have happened at the same time so we feel good about making the decision (or at least we say we do out loud!). I'd suggest for you and your OH it might be good to do the same - discuss in advance what would constitute an unacceptable way of living (considering the needs of all 3 of you) and then when the time comes it's easier to make the decision.

The only other advice I have, from attempting it myself, is being very open about how what's happening is affecting us and always being quick to apologise for irritability that we tend to direct at each other when we can't direct it at my MIL because it's not her fault, when of course its no-ones fault but it's human nature to direct it somewhere.

Best of luck with everything and I hope things go as well as they can, J x

 

[maryjoan]

@Lindie16 you don't have to raise the money for care. An assessment is about your mothers finance. Under no circumstance give details of your own income or savings - only your mothers.

Just picking up on this - my OH and I are not married,but live together. When he needs to go into a care home - am I right in thinking it is only HIS income that is taken into account?
We rent and have no savings.

 

[canary]

When he needs to go into a care home - am I right in thinking it is only HIS income that is taken into account?

Yes - and that is true even if you are married

 

[maryjoan]

Yes - and that is true even if you are married

thanks a lot - that is a help xx

 

[Lindie16]

I'm so sorry to hear you're going through this - I totally understand as am in my late 30s with no kids, running a business full time, and also struggle with balancing things while looking after my MIL. It's a bit different as my OH and I are with her only 4 months a year and the rest of the time she has carers - but the pressure and stress on work, our relationship, and our sanity is there for us too and especially during the time we are living together as you are. It's sometimes frustrating as we don't have kids yet have a similar burden - my MIL has become increasingly like a child in many ways. Someone posted about considering the needs of all of us - not just the person with dementia - and that was amazing advice for me when I have posted here before. It sounds silly but it was like a revelation - the fact that it was ok to think of myself and my OH and find a compromise - not just only think of my MIL (as the most vulnerable) no matter what the cost to us. Now I try to think about finding a middle ground between all our needs, often having to push my OH to see it the same way as his tendency is to be self-sacrificing when it comes to his mum, but then get incredibly stressed and frustrated about it.

The home issue was taboo - she would threaten suicide even when we brought carers in - but now we've reached a point where we are going to try and make it happen. We decided in advance what the criteria were around making the decision - based on when she stopped being able to do the things she loved at home and / or had become a safety risk - and both have happened at the same time so we feel good about making the decision (or at least we say we do out loud!). I'd suggest for you and your OH it might be good to do the same - discuss in advance what would constitute an unacceptable way of living (considering the needs of all 3 of you) and then when the time comes it's easier to make the decision.

The only other advice I have, from attempting it myself, is being very open about how what's happening is affecting us and always being quick to apologise for irritability that we tend to direct at each other when we can't direct it at my MIL because it's not her fault, when of course its no-ones fault but it's human nature to direct it somewhere.

Best of luck with everything and I hope things go as well as they can, J x

Thank
You for your kind words and advise
I have recently spoken to doctor who has prescribed some medication. We also have a lady coming today to give us carer advise. Thank you so mucj for your help and advise

 

[Bunpoots]

That’s good news @Lindie16 . I hope you manage to get all the help you need. Let us know how things go.

 

[Emms]

We were in a similar position where as mum is now being cared for by dad full time. Very very stressful for him. As I worked all day. I am still at home with them and in mid 30's. Only reason haven't moved out is this has beeb the last 5 years and now feel i would be letting Dad down if I up and left.

But we have recently has assessment from SS and we now have been given a couple days day care a week and respite care which dad really needs. Day care has just started and it is hard on him leaving her there after 40 years of marriage. The respite care when it happens will be hard as I feel I have let mum down by sending her there. But we need a break and Dad needs his own time to.

I really hate this illness and wouldn't wish It on anyone.

 

[Shedrech]

hi @Emms
sounds to me as though you have done the very opposite to letting your mum down .... you are standing by both your parents, recognising that they each have their own individual needs, and have found a way to support both of them - well done
nothing in life is simple, there are usually compromises to be made, your mum of old woul probably have understood all this and be proud of how you and your dad are caring for her

 

[Witzend]

Distraction never worked with my mother, either. TBH it used to make me want to scream when people suggested distracting with 'a nice cup,of tea' - as if I was too stupid to think of anything so simple.

Don't know whether it will help at all, but what I eventually hit on when she was obsessed e.g. with the idea that someone had stolen something valuable (once it was a house!). I would tell her that I'd been on to the police/a solicitor, and they were on to them, so not to worry. Her short term memory was so bad by then that she never remembered that I'd said much the same before.

As for care homes, I have to say we never even mentioned it to her - she'd only have got angry and refused to go. Why would she, when according to her there was nothing wrong with her?
When the need had finally become urgent, we arranged it all without a word and had to get her there by stealth.