New to Dementia

Tell us a bit about yourself here.
Hi everyone,

I'm here because of my mum, she is 74 and retired 3 years ago. However since then I noticed a huge change in her.

I'm 35 with my first baby my mum used to be a nanny and she loves newborn babies. When my baby was born (May 8th), mum wanted to help with everything, however I found her confidence as a nanny has gone. My mum struggles to hold my baby getting in a muddle with where to put her hands for support then I'll ask her to pass me a nappy and she seems to get frustrated because she can't seem to find the nappies which are right in front of her, these are just two noticeable changes but there are many more, she forgets a lot things, misplaces her bag, cardigan and glasses all the time. My brother took my mum and dad to Portugal for a break and she couldn't understand why she had to leave her bag at security and go through the gate speratly and then collect her bag, she was also convinced she had been to a water park they visited but this was the first time she has been to Portugal.

My mum is very proud and doesn't want to admit something is wrong I believe she knows deep down and is afraid, we have managed to get her assessed, my brother went with her and it was an eye opener for us as she couldn't draw a clock face and she didn't know the date or day! I am a little frustrated as I took her to be assessed back in January last year and she was told she was getting in a muddle because she needed councilling for some unresolved issues. However when she was assessed for councilling they told us she doesn't need any but maybe something to work on her confidence. So since then I have been trying to get mum seen again as I feel she has detorated a lot since then.

It's heart breaking seeing my mum the way she is but I feel I can't have a conversation about it because she is scared to admit this is happening and just blames my dad for everything. My dad is struggling I know because for an easy life he doesn't argue back and dies everything for my mum, he struggles to walk now but he is still working because unfortunately they still have debts to pay. My dad is 76 he doesn't complain but I'm worried my mum is getting too much for him. He again is proud and doesn't like to ask for help or accept it!

I'm glad my mum has finally been assessed and is now waiting for her CT scan I'm just worried what the outcome will be and then what the next steps will be in helping both my mum and dad. I just want them to be happy and enjoy the life they have and the grand children they have 😢. Sorry for the long message.

Catherine
Catherine hi and welcome.

Although 74 is 'young' to have dementia, sadly it's not impossible (some are afflicted even younger, with early-onset dementia). It sounds like you are doing all the right things in getting a diagnosis, frightening though it may well be for the family. Will your mum be told, or will it be too frightening for her? (Would any of us want to know?? Difficult question.) She may not, of course, be able to 'take it in' if she is told.....

As you are aware, it's an irreversible process, and eventually a 'terminal condition' (but usually after years and years - I believe the average lifetime post-diagnosis is something like 8 years, but don't quote me on that - I was told it by a friend who looks after her father with dementia - five years out now - and my own 93 y/o MIL has had it for at least 4 years) (again, it's tricky to say exacty when it starts....).

However, there do seem to be some drugs that can help to stabilise or at least 'minimise' the effects, etc etc. Not my area I'm afraid, but do get the docs to tell you all that can be done.....however limited at the moment. (And remember, new research comes out of the labs and trials all the time, so what might be deemed 'incurable' now may be 'curable' and even, potentially 'reversible' perhaps, in years to come.)

Your main challenge now, however, is practical. First off, however proud (and scared) your parents are, they MUST accept 'outside help' of some kind. This, if you read on this forum, is an essential. It's SO common for families to say 'Oh, mum/dad/gran/gramps etc won't have 'strangers' in the house!'.....but the grim alternative is that if they don't accept outside help they will either struggle on (as your dad is already doing alas) and get worse and worse the two of them, or else YOU (and/or other family) have to go in and help.

Obviously our parents want us to be the ones looking after them. My MIL would have been blissfully happy to have moved in with me and basically had me as her permanent nanny! When she came to stay with me (weeks at a time), I used to call my house Hotel Jenny - there is only me now (I'm widowed) - and I simply 'waited on her hand and foot' because she could do almost nothing for herself.....and I had to entertain her non-stop too - dear God, the hours of daytime TV I've watched, then headed off to the supermarket (very very slowly) and then for drives in the countryside all afternoon - she was blissfully aware of it all - as in did I ever get a word of thank you? No, for she never knew how much of a burden she had become.....

It simply 'took over my life' each and every day.

So, you can see why you CANNOT get into that situation with your parents! Not as a young woman, and most certainly not as a new mum.

Which is why getting outside help organised is essential. This is not about what they want ....it's about what they need. Time for a family conference - firstly without them, and then with your dad, and then with your mum as well.

More below, as this is a long email already.
The first subject to address is financial. Again, as you may know, state-help is determined on how much in assets and savings your mother has. Do they own their own home, and do they have savings. (You mention debts - which in this situation might actually help get them 'free' care.....).

It's essential to work out what they might get 'free' from the state, and what they'll have to pay for. There are many forum members who know the rules inside out, and there is always the team of experts on Carers UK itself (best to email them we are told, rather than phone the very busy helpline).

Then it's a question of getting your parents to accept outside help, and determining what it is they would most benefit from.

What does your dad have to do for your mum? Can she get up in the morning and get dressed and make her own breakfast? Can she shower herself? Can she make a cup of tea. Can she still watch TV and be 'self-entertained'....etc etc etc. Does she 'wander off' - eg, out into the garden, the street. Can she be 'left home alone' or does someone else have to be with her the whole time?

You say how quickly she seems to have deterioriated, and I'm wondering whether a TIA might be involved (ministroke) - also, be aware that UTIs (urinary infections) can seem to exacerbate dementia, but that is usually only temporary while the infection is in their system.

Overall, however, she will simply get worse and worse. Which is why setting up outside care now, and ready to escalate it, is necessary.

However many care-workers come in to, say, help your mum shower and get dressed, or 'put her to bed' or whatever, your dad will need breaks. That will require your mum, say, going to day care centres, so your dad gets regular time off during the day, and also for him to have complete breaks, where your mum is not in the house (residential respite care) - or, perhaps, comes to stay with her children for a week??

Eventually, the sad day may come - and it's impossible to say when - when your mum simply needs to be in residential care where she has round the clock staff on duty. (eg, my MIL in a home for dementia patients routinely wanders around at nighttime, or falls out of bed, etc, so a team of carers is always necessary to be on hand - she is WAY beyond a single person - me! - looking after her).

There is only one 'blessing' of a perverse kind in dementia, and that is that as it worsens, the patient themselves ceases to be aware that they have it. In a way, my MIL is 'happy' because she doesn't know she has dementia......it's a small comfort, but for her, at least, a real one. It will be similar for your mum eventually....
One last comment for now -

Make the most of your mum's remaining faculties, while she has them. I know it's a sad thing to say, but please do take as much, much shared pleasure with her, and all your family, and her grandchild - have outings, take photos, make memories....they will become very precious.

Get as much 'family history' out of her as you can, get out boxes of old photos and go through them, get her to talk about what she can remember, record her voice, film her.....

It will stand you in good stead for the sad times ahead, and in a positive way may well help 'hold' her memory as well, by stimulating it. She will need increasing 'interaction' with people as she will lose the ability to entertain herself. She won't be able to watch TV on her own - she will need 'someone with her' to enjoy it. My MIL took to watching old Morecombe and Wise shows and increasingly appreciated 'slapstick' humour, which she really enjoyed. Make the most of all your mum can still enjoy.....

She will become increasingly 'toddler-like'.....a phrase on this forum is 'elderly toddlers' in that like a toddler, she will need someone not just to help her do things, but help her enjoy things. In a way, desperately sadly, as your own child 'develops' your mum will 'de-develop'......

That's why I urge you all, as a family, to make the very, very most of her and what she can still do. Already I look back to things with my MIL that she is way, way past now....all so, so sad.
Welcome to the forum Catherine.
A very difficult and heartbreaking time, the Dementia journey. First of all, has your mum been tested for urinary tract infections? They mimic Dementia in the elderly. ( Also make Dementia symptoms worse).
Sadly though and in my very humble opinion it sounds like Dementia is setting in. It is a matter of getting a diagnosis. Your mum will be scared and in denial, but the sooner an official diagnosis is made the better for you and your family. I'm afraid it will be a push with the NHS.
Sadly my husband is in a nursing home because of strokes and vascular dementia now. It took a very long time to get him assessed, and that was after his last stroke.
I'm so sad to read your post. Your Baby has to take priority, and for you to enjoy the tender years.
I hope you can get as much support as you can and need.
Looks like I've crossed posts with Jenny.
Ps May husband is 72
Hi again - just a quite point about 'pride'. It's all too common for the elderly to 'not want help' not just from family, but from 'the social' in particular!!!

For their generation, social services are for 'the poor and feckless' swarming around on sink estates (etc etc), and nothing to do with 'nice middle class people'..... (!)

YET, if you think about it, we all (especially nice middle class people!!!!!) are more than happy to use the 'free' NHS, and don't regard that as 'asking for help' etc, or being 'poor and feckless'.

So SS is nothing different - like the NHS is a paid-for-service (ie, taxpayer paid - and I'm sure your parents have paid a LOT in tax over their lives!!!!) and we have every right and entitlement to use what SS offer when and as we need it. It truly is no different from using the NHS.

Do bear that argument in mind if you find your parents not wanting to 'involve SS' in order to get 'free care workers'.....
Hi Catherine,

A very scary time for you, especially with a young baby.

Hopefully mum's CT scan will lead to a diagnosis. Certainly it will show if your mum has vascular dementia. IF it is dementia, your mum will most likely be given tablets which slow the illness down. Dependent on what support is available in your area, you may also be given advice on how to access that. In general, I would say it is vital to get as much support as you can because this will help your dad too. He will need time off from caring for your mum.

A lot will depend on funding and how much money mum has. It is worth contacting your Social Services department and asking for a care assessment for your mum and a carer assessment for your dad. Again this will depend on what is available in your area.

Finally (?), an important issue will be Power of Attorney so that your mum's financial affairs can be dealt with by others as and when the need arises. Do not delay this one as your mum will need to sign the paperwork.

I know this must seem overwhelming at the moment but ask away, or even just rant. Many of us have been through similar situations and can offer a virtual hand to hold while you get some answers.

Take care, Anne