Hi I’m a daughter of a mum with dementia and I’m lost !!

[Crazycatlady01]

I feel lots of things guilt, worry , anxiety, anger, loss and I’m just managing to keep going with my own family life (husband ,2 kids, job) .

On brief : I’ve been trying to get a diagnosis for my mum for over two years . My dad wouldn’t respond, my mum doesn’t understand , my dad says things like we don’t need help , we don’t want to be bothered with hospital appoints , it’s just old age (she’s 69)!.
Anyway I have turned up and staged a sort of an intervention saying this is ridiculous she needs help , I’ve spoke to my sister and we’ve gone together . And although I share how I feel nothing happened , I was shut down , told ‘I’ve got it under control , we’re fine ‘ by my dad.

Anyway lock down happened and he really struggled on his own and called me to say he ‘didn’t want to be her cared ’ . This was good in some ways as we finally made the call to the doctors and started some assessments. We have got further with doctors had tests , ct scan , she’s got a thyroid issue , and memory clinic test . So that’s good as we have made progress, but what now ???

Dad finally admitted she can’t be left on her own - she wanders off , he leaves the back door open and the neighbours ring me up. My sister has started to work from home one day a week to give him time off and we try to cover him playing golf at the weekends but I feel very uncomfortable at the moment with Covid as I’m a high school teacher and near lots of children.

He has been offered 5-6 hours care a week but he sort of said he didn’t want to do that as my sister could come round . I want proper care for my mum and I want to help my dad be able to cope as it must be so hard for him but I feel a bit stuck with what to do next .

It’s so complicated and effects a lot of emotions .
Hope someone can give some advice .
Thank you

 

[lemonbalm]

Hello @Betsy01 . Welcome. Well done for making the progress you have made so far.

Your parents have been offered 5-6 hours of care a week. Try to persuade your Dad that now is the time to introduce carers, so that the rest of the family can be just that - family - and not carers.

It's difficult time for you all so keep posting for support and advice. We'll do our best to help you along.

 

[Bunpoots]

Welcome from me too @Betsy01

I agree with @lemonbalm - you need to persuade your dad to accept the care that’s offered. My dad used to say he didn’t need carers as I would look after him but eventually it gets too much and, as you say, you have your own family to consider.

I know dad didn’t like the idea of strangers coming into his house but all of his carers were lovely and they weren’t strangers for long, but rather someone to chat to while they got on with their jobs. It made a huge difference to me too as I’d been tied to looking after dad on a twice daily basis while trying to work as well.

 

[Crazycatlady01]

Thank you so much for commenting . It’s just so hard and feel we’re in limbo. Covid is not helping as I’m worried i am in a school with 1800 children .
Can I just ask what happens now ? Will someone contact us with a diagnosis ? I’m going to try and encourage him to get the cate we’ve been offered my sister is a nurse and also wants him to take up the care so we’ll both try to persuade him . I worry for them both so much all the time x

 

[lemonbalm]

With all big problems, it's best to break them down into manageable pieces. I would say concentrate on trying to sort out the care for now. Everything else will be ticking away in the background. My mum never did get to a memory clinic or have a formal diagnosis but other members will be able to advise you on that process. Keep posting on how things are going.

 

[silkiest]

Hi @Betsy01, health problems such as hypothyroidism slow down the body and brains function. It can take quite a while to stabilise this and hopefully you may see an improvement in your mum when she is on the correct treatment. If the scan is normal memory clinic may want to delay diagnosis, or re assess once the thyroid problem is stable.
I would recommend you or your sister try and go with your mum to memory clinic for her results ( or be there if there is a telephone consultation). My MIL got her appointment and went alone several years ago - she was diagnosed with cognitive impairment but told us everything was ok, we did not find out otherwise until later when she was diagnosed with alzheimer's. I learnt from this and always took my mum to her appointments albeit as a taxi driver or to "save dad the bother".
Medical staff cannot divulge private health information to you unless you have a power of attorney for health and welfare. If you do not have POA set up for both your parents I would strongly advise you get them organised ASAP before your mum is too ill to give consent. You do not need a solicitor for this - go on gov.co.uk and search power of attorney.

 

[Shedrech]

hello @Betsy01
a warm welcome from me too

this will sound counter-intuitive and maybe cruel to be kind ..... you and your sister both work in very social settings (though if your sister is working from home, there's also the pressure of the need for her to be working there, not leaving to visit), and you've expressed concern about your job and potential risks for your parents .... might you tell your dad that you feel bad but it's just too risky for you all for you and your sister to be visiting as much as you do, especially as restrictions are being increased in so many areas ... that you feel guilty for not being able to provide as much support as you'd both like ... that it would help you feel better and less stressed about your children (play on them being such caring grandparents) if your dad would accept as many home care visits as possible, a cleaner and some form of meals on wheels (or at least accept microwave ready meals etc) ... then you both will be able to visit (but not both every day) and be social with them
I knew my dad would have done anything to help me so at times did give him this kind of excuse to 'back down' and accept help

it will be tough on you and your sister to deliberately step down, but it may be a way to ease your parents' reliance on you both as there will be plenty of calls on your time and energy in the future, so think of this as building up your reserves for the long haul

it may help your dad, if this is part of his thinking, to know that Social Services much prefer to keep people who need support in their own homes for as long as possible, rather than move into residential care, so it will actually help to keep your mum at home if they arrange as much care as is needed as soon as possible rather than put it off until he reaches carer breakdown and cannot provide the care your mum needs

some folk also worry that they will have to sell their home to pay for care ... your dad may be concerned about this ... reassure him that their home is disregarded in any financial assessment to pay care fees, so will not need to be sold
if he's worried about how he will pay for care, HE won't ... it should be paid from your mum's finances and half any joint savings, and if your mum's finances are below certain levels, the Local Authority will begin to contribute

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

it may also be worth asking Social Services for an OT to visit their home to see if some aids and adaptions might help them both ... eg there are door sensors and carelines that can be installed

the results of tests and a diagnosis will be passed to your mum and her GP at some point, though may take a while ... this time between is tough on everyone; so many questions ... keep posting as members may be able to reassure and offer useful suggestions

 

[Dimpsy]

Hi @Betsy01, there's been some really good advice given from others, all I want to add is how about a bit of reverse psychology?
Along the lines of "the carer's are just helping out while Covid is lurking". Maybe if dad thinks it's just a temporary measure, he'll feel more in control of the situation, and as others have said, the carer's will soon become friends.
The key is getting carer's through the door to start with.

 

[Crazycatlady01]

Wow all this advice is so useful and reassuring so thank you so much . Yes it seems they want to ensure the thyroid is at the right level before a diagnosis .

Dad seems to reaching the end of his patience had lots of messages whilst at work so going to try to encourage him to get more help.
Can I ask what is an OT?
Thank you

 

[Shedrech]

hi @Betsy01
an OT is an occupational therapist ... the one who visited for dad was really helpful in suggesting aids for him

 

[lemonbalm]

Wow all this advice is so useful and reassuring so thank you so much . Yes it seems they want to ensure the thyroid is at the right level before a diagnosis .

Dad seems to reaching the end of his patience had lots of messages whilst at work so going to try to encourage him to get more help.
Can I ask what is an OT?
Thank you

Lots of messages is always stressful. I hope things are ok and that you can persuade your Dad to accept the care that's been offered.

 

[Crazycatlady01]

hi @Betsy01
an OT is an occupational therapist ... the one who visited for dad was really helpful in suggesting aids for him

Great thank you yes my dad is at the end of his tether so helpful advice is what he needs . Thank you