From April 2025 the amount that can be earned before it affects the Carers allowance rises

https://www.carersuk.org/press-releases/carers-uk-welcomes-carers-allowance-earnings-threshold-increase-in-autumn-budget/

https://amp.theguardian.com/uk-news/2024/oct/15/labour-to-set-up-review-after-carers-allowance-overpayments-scandal

https://www.theguardian.com/society/2023/feb/19/could-alzheimers-be-caused-by-an-infection

Welcome to the twilight zone!

They don’t ever tell you about this when your beloved is diagnosed with Parkinson’s. They leave you to figure it out for yourself, without first shooting your beloved or going for a long walk on a sort pier.
Oh, they vaguely ask about ‘depression’ or ‘apathy’ at the doctor’s office; usually with the prescription pad in hand. But they don’t explain why they are asking, or give any advice about these ‘Non Motor Parkinson’s Symptoms’. And this really infuriates me, because in all honesty it is the Non-Motor symptoms that cause most of the difficulty as time passes. The Motor symptoms become the minor issues, and to a large degree can be dealt with.

But what really pisses me off is the use of those particular words – depression and apathy, because normal people understand the word ‘depression’ to mean ‘sadness’ and the word ‘apathy’ to mean ‘doesn’t care’. And the reality of the emotional condition of your beloved is anything but sad and uncaring! And so you are left not understanding what is going on, trying your best to ‘cheer up’ and ‘motivate’ your beloved, and slowly going out of your mind with grief and worry. And your beloved is left wondering why you are behaving so strangely, and slowly going daft with guilt and frustration. And this is so unnecessary. By simply explaining some simple brain chemistry in an everyday way instead of trying to impress us with their advanced biochemical vocabulary, these doctors could save us all a lot of grief. They could talk to us about ‘the Twilight Zone’. They could prepare us for it, and alert us to it, and encourage us in finding our ways of living with it.

Make no mistake about it folks. The Twilight Zone is real, and it is where almost every single person who has Parkinson’s is heading. Telling yourself it is not real, or that the medicine is going to prevent it, or that we can prevent it by ‘keeping them active’ or ‘keeping them involved’ is a fool’s errand. And then we feel guilty when we can’t keep them active and involved. And we feel angry with them for not letting us keep them active and involved. So, sit back and let me explain this Twilight Zone to you. It is natural, and it really is nothing to be afraid of you know. There will be a bit of Science here, but science can be fun. You see, it is all about sleep. I have been doing a bit of research about this, and the best summary I can come up with runs as follows.

In the underside of the brain there are some specialized clusters of cells which release, absorb, or otherwise respond to various brain chemicals. In so doing they operate as a two way switch. If it is going one way, it wakes you up. If it is going the other way it puts you to sleep. The two way system is very stable in healthy young adults, and therefore the transitions from awake to asleep and from asleep to awake are quick and complete.
But sometimes damage occurs which weakens the two way switch in one direction or the other. When this happens both pathways become impaired, and the transitions become more diffuse. This means that people have difficulty falling asleep, difficulty waking up, and are not completely awake when they are awake, and not completely asleep when they asleep. The switch can never fully go in either direction.

And this is what I call the Twilight Zone. This is where your beloved must live, and therefore this is a state that we have to learn to fully understand. So come with me on a voyage of the imagination, and let’s visit the Twilight Zone.

It is eerily misty in this world.
Time is strangely elastic, and rather unpredictable. Your perception of time is strangely elastic, and rather unpredictable.
And when your perception of Time slips, a lot of other things slip with it. Think about it for a minute. You are used to living in a world where you are accurately aware of Time. Try to imagine a world without this awareness, or with flawed awareness.
How do you think, when you are disconnected from Time? How do you connect stimulus to response? How do you connect what you want to do to the process of doing it?

Here in the real world I decide to stand up, and my body goes through a rapid series of steps. Move the feet just so. Tilt the spine just so. Exert force with the muscles of the thighs, the abdomen, and the back of the legs just so. I don’t even have to think about it. It just happens. My elderly knees grind a bit, and I complain a bit, but it happens.

But in the Twilight Zone, I can’t even make the connection between wanting to stand up and initiating even the first bit of movement in my feet. It is not simply a case of the muscles not doing what they are told (A motor symptom). It is a case of the order never being given in the first place. There is a complete disconnect. This is what the doctors call ‘apathy’. But it would be more accurate to call it ‘disconnect’. And it is a result of being ‘not fully awake’.

Now, just try to spread your imagination out until this disconnect is in every single aspect of your life. A disconnect between hunger and eating. A disconnect between a full bladder and going for a wee. A disconnect between hearing your favourite song, and the memory connected to that song. A disconnect between the sight of your beloved and the surge of love.

In the early days, it is possible to rouse your beloved to complete wakefullness. But it will not always be possible. As time goes on, your beloved will become more and more disconnected, more and more sleepy. This can not be helped much by anything you do, or by any medication. All you can do is help slow down the journey into the Twilight Zone by keeping your beloved’s fitness levels and nutrition levels as good as possible. But don’t, for mercy sake, fight so hard to avoid what is coming that you loose out on what you have now. Don’t be so afraid of the Twilight Zone. Don’t allow your beloved to be so afraid of the Twilight Zone.

Because it is no all bad, you know. The Twilight Zone is not a bad place if you don’t bring fear and guilt in there with you. The Twilight Zone can be a friendly place, and a pleasant place to be.

Because the Twilight Zone is the space of daydreaming and reminiscing. It is the place of poetry, the place of creativity. In fact, actively engaging with the Twilight Zone in the early stages of Parkinson’s can make the eventual journey much more pleasant for both of you, whereas fighting it will make the eventual journey more unpleasant for both of you.

Of course, that is not the kind of advice that people want to hear; the advice to ‘let go’ and allow the condition to change the way you live to an enormous degree. But it is the advice I gave my beloved. And I instigated the changes in our lives that allow him more and more opportunity to drift in the Twilight Zone.
If you doubt the efficacy of that advice, just check out his poetry. (Facebook; Denis Murphy’s Poetry.) My beloved could scarcely read poetry when I met him. He thought the proper use of a pen was filling out forms. But the Twilight Zone has given him quite a gift, and his gift enriches the lives of many.

That is not to say that I do not nag him into taking a wee walk at least three times a week, and into having a shower at least once a week whether he needs it or not. I don’t nag him too much about chores, simply picking up the slack as he drops it. Eventually I will be doing all the chores, while he does all the dreaming. Eventually he will dream his way into the land of the Ancestors, where he will wait for me.

© Emer Cloherty 2019

Colin Farrell’s experience with his own son, now aged 20, who has a condition known as angelman syndrome , encouraged him to create this foundation

https://colinfarrellfoundation.org/

In memory of her dear husband who had dementia

https://youtu.be/PVGVFEiiaWM?si=d6JAp_NVc-qslcpA

Next week starting on 10th June it is once again Carers week, but I wonder if anyone on here has felt any benefit from the week?

Been invited anywhere? Received an invitation, offered assistance, been given a gift or do you feel the only reason for it is to raise awareness.

When we went to our Carers Club, we occasionally had a speaker and had extra cakes. Once we had an outing which we were able to take our cared for with us. Which was often not the case.

What’s your experience of this special week?

https://www.scientificamerican.com/article/acting-out-dreams-predicts-parkinsons-and-other-brain-diseases/#:~:text=Acting%20out%20dreams%20marks%20a,in%20older%20adults%2C%20particularly%20men.

https://amp.theguardian.com/society/2024/apr/17/injustice-92-year-old-with-dementia-told-by-dwp-to-repay-7k-in-disability-allowance

https://www.bbc.co.uk/news/uk-68774399.amp

https://www.gov.uk/government/news/husband-of-the-late-dame-barbara-windsor-scott-mitchell-named-peoples-champion-for-national-dementia-mission-named-in-memory-of-beloved-star#:~:text=I%20am%20working%20with%20the,named%20after%20my%20late%20wife.

https://www.dailymail.co.uk/health/article-13244325/amp/cut-risk-dementia-scientists-name.html?ico=amp_related_replace

Sorry a bit late with this

https://www.macmillan.org.uk/cancer-awareness/brain-tumour-awareness-month

https://youtu.be/abmx6cqiZmI?si=_2bJhK8rGkrZYE8o

*
https://www.msn.com/en-gb/health/other/wendy-mitchell-dead-author-and-dementia-campaigner-announces-own-death-with-powerful-open-letter/ar-BB1iINmF

Appalling behaviour by staff and no prosecutions

https://www.bbc.co.uk/news/uk-england-cambridgeshire-68167120

This project is based in the US but is available worldwide and I think it’s absolutely beautiful. For those left bereaved or for those with a cared for that would like something they were knitting, crocheting etc that couldn’t quite be finished.

https://www.looseendsproject.org/

BT and Virgin have been told by the Government to stop forcing digital phone lines on vulnerable customers. BT has said that it will only switch vulnerable customers if "the telecare providor or the customer can confirm their service is compatible and functions using a digital phone line". They will offer battery back-up units and backup phones which give Digital Voice customers auto switch over to the EE Mobile network if there's a power cut, or if the Broadband service goes down.

Something we have discussed on various threads is now being updated

The Powers of Attorney Act 2023 aims to digitise the process and make it faster, easier, more accessible and secure. It will: speed up registration time by picking up errors earlier and allowing these to be fixed online. allow checks on the identity of those applying for an LPA to prevent fraud

However it doesn’t go far enough and the law society (and I) had concerns before it was agreed

https://www.lawgazette.co.uk/news/society-voices-genuine-concerns-about-power-of-attorney-reforms/5110158.article

As some of us may have seen on a recent tv show, a friend or relative talks, convinces or sneakily registers a vulnerable person for online banking after gaining their trust and then sets up standing orders or transfers money into other accounts. This is even before a POA! No one checks the persons capability to use the systems and the bank cannot see the person typing in details. I know a blind couple who had no idea and had not requested an online account who now do not get bank statements whilst two relatives, one that has moved in with them check, filter, shop, transfer and make payments without any discussion or permission of the account holders.

So it is no less likely for those prepared to do so, to do the same with one. Even taking the POA out totally online. Then receiving the new online key to notify banks and other institutions that they are now able to act on behalf of the person or persons.

What do members think 🤔 of the reforms?

A newer link from the law society

https://www.lawsociety.org.uk/topics/private-client/powers-of-attorney-act

https://www.bbc.co.uk/news/uk-wales-67762173

Mary mentioned catching the end of a piece on getting stairlifts fitted but wasn’t sure how or where from.

I think it may have been a reminder of the Disabled Facilities Grant

https://www.gov.uk/disabled-facilities-grants/what-youll-get

My own daughters cared for was helped through a grant after their return from hospital after Covid three Christmas’s ago. It did take a while to sort out, and in their case it wasn’t for them to get to a bedroom as my daughter managed to ‘swap’ a downstairs craft room with their bedroom and they managed with a commode for the first few months, but with the main bathroom/walk in shower being upstairs an assessment was finally made and the stairlift fitted.

It is means tested however so in the case of my sister in law she found it better to pay privately for a walk in shower and stairlift rather than leaving the debt against the house for her children to sort out when she passed away a couple of years later.

More information from Age UK

https://www.ageuk.org.uk/information-advice/care/housing-options/adapting-home/disabled-facilities-grants-to-adapt-your-home/

For those with loved ones with cancer

https://cancercareparcel.com/cancer-gifts/

For Parkinson’s sufferers

https://www.mirror.co.uk/news/uk-news/devices-worn-patients-able-track-31565444

Another company that offers everything from
Pill dispensers to electronic fall alerts (as on other threads)

https://helpline.co.uk/collections/medication-made-easy

https://www.bbc.co.uk/news/uk-67414940

https://www.scooploop.com/thread/personal-pendant-fall-alarms

A very interesting and developing thread. The new Watch seems to be coming up trumps.

Here is my impression of our first disabled holiday with the "Limitless Travel" company

We travelled to South Mimms services the night before to meet the coach at 9 am, we stayed at the Premier Inn that unfortunately told us just 2 days before that the restruant was closed and the prebooked meals would be refunded later.
Limitless Travel gave me a number for the courier to assist with luggage to the coach that took us to Chester via a 45 min stop in Birmingham
Hiccup no.1 the telephone number was an old one and was turned off, so waiting outside the hotel a lady came out and asked what we were waiting for? - it turned out it was the courier we were supposed to phone, she had changed her phone, told company but still given her old number!
We arrived at the 4 star Hilton hotel in Chester about 3 pm where we met the other members of our party by the three couriers/carers. We then went to our separate rooms to refresh before dinner at 7.pm.
Our room was a suite with a king sized bed with its own bathroom, there was a large screen 55" tv that swivelled in a wide divider separating the other room that had a hospital bed and a wheeled commode/shower chair plus a fully disabled wet room. There was also a proper coffee pod machine along with the usual kettle etc. A settee, glass coffee table, armchair, desk and chair, fridge and safe. All in all a very nice room that catered for our needs.
The coach driver was a real character at our first dinner that had everyone roaring with laughter within the first 15 minutes.
We had a set menu to choose from that changed daily, it had a choice of 4 starters, 5 main courses and 4 desserts, followed by tea or coffee.
We were seated on a long joined up table that had the whole party on it, chairs were removed to cater for wheelchairs. The food was first class.
The trips out to Llandudno, Liverpool and Llanberis were well organised and catered for all disabilities, we had the same coach and driver from beginning to end. Weather wasn't great at Liverpool but we all enjoyed our river cruise around the docks, at Llandudno we had a high tea in a hotel overlooking the bay in warm sunshine, as was our trip to Llanberis where we all got on a train with a reserved carriage for wheelchairs for a trip along the lake, stunning scenery there.
To be honest I thought the cost was too much but afterwards on reflection, the quality and detail provided was faultless and we could well be going with them again. (After saving up of course!)
Cost was
Adult Holiday Package (Ray Proctor) £1,199.00
Adult Holiday Package (Jackie Proctor) £1,199.00

Profiling Bed (Jackie Proctor) £479.00
Shower Commode (Jackie Proctor) £161.00

Discount - £100.00
Total. £2,938.00

(To put in perspective, the 4 days in the hotel suite we had would of cost me £760, plus half board meal at approx £600)

As my mum is in the latter stages of dementia now and has been bed bound for the last few weeks I am purchasing a ‘hug’ for her

https://www.alzproducts.co.uk/hug-sensory-companion-music-player

She already has an electronic cat and various toys but being apart from all the other residents alone in her room for 24 hours a day it must be so very lonely. I visit every day, play music, tell stories, feed her and my husband dances, does puppet shows and reminisces about their numerous outings together.

This site makes it easy for buyers to claim the exemption from VAT and the item was cheaper from them than any others I found .

For the last 18 months, since I have had to take on a full time caring role needing full time watching over I have lost 21 lbs in weight which is a big bonus as being no longer able to indulge in playing golf increasing weight has become a problem.
With a heart condition of my own this is a real asset as I might be around for a little longer than I thought.

https://news.sky.com/story/alastair-stewart-tv-star-reveals-dementia-diagnosis-12958454

Taken from his forthcoming book

https://www.dailymail.co.uk/femail/article-12497839/amp/We-exactly-conversation-day-week-never-tire-TIMOTHY-WEST-reveals-anguish-watching-wife-Prunella-Scales-gradually-succumbing-dementia-joy-lifes-simplest-pleasures.html?ico=amp_articleRelated_with_images

Something which so many of us have to deal with nowadays 😳

I found this procedure by accident.
To ensure the correct dosage it became necessary for me to dispense my wife's medication so I decided to do this as the first task of the day, immediately on waking up. One morning I awoke early so got up, pulled the curtains and dispensed the medication and as I was ahead of schedule I sat up in bed and relaxed for 10 minutes or so, and I noticed that when I got up to start the day that I was functioning much more efficiently, so I tried it again with the same result.
Now I rise earlier so that I can dispense the medication, with 10 minutes to spare to sit in bed, relax and plan the days activity,
I find this very helpful, perhaps you might find it so too.

This is what our bathroom looks like after having the bath removed and a wheel in shower fitted, plus some new units, this was all fitted within 4 days and was tax free.
We have a holiday planned with a specialist disabled holiday company, special coach to Chester then trips out to Llandudno, train trip to the national park then a day in Liverpool the 5th day is travelling back. The hotel is supplying a hospital bed and wheeled shower/commode chair. Everything is wheelchair friendly, not cheap as you can imagine but our last holiday was 2019 and we certainly need this break.
The powered wheelchair is now sitting in the garage and I'm going to sell it as Jackie just cannot control it safely, I've bought a sturdier used wheelchair that she seems to like.

As you may know there are certain reasons and disregards for paying council tax

Some of these are if the only other member of the household is under 18, or you are a carer for the other person and they are not your partner, or if the only other adult in the household is counted as having a SMI
(Severe mental illness) this includes if they have Dementia or Parkinson’s Disease.
You can apply if they have a formal diagnosis and are receiving a benefit such as Attendance allowance.

The government site gives full details

https://www.gov.uk/council-tax/who-has-to-pay#:~:text=Some%20people%20are%20not%20counted,under%2018%20years%20old

We have had a thread in this group about ataxia before . I have found an update on the physiotherapist Bob, who appeared on YouTube, assisting others, and who now has ataxia himself. As you can see and hear, he is now struggling with his mobility, speech and balance but as he explains it does not effect his mind or thinking

https://youtu.be/-2HuJxlMiNw

I post this as it might make an odious task a bit less unpleasant.
When there are medical issues to be coped with it is sometimes necessary to collect poo sample for analysis. The NHS supply a leaflet saying how this may be done without the sample touching the water, none of the methods are particularly convenient.
Having recently been faced with this problem I have found the following solution, get a shallow plastic food packaging tray (the sort they pack meat in) about26 x 17 cms which you will find will fit under the rim of the toilet basin, line it with toilet paper and clip it into place. Having made the deposit, take the sample and then just empty the tray down the pan.
Very clean and with the minimum of unpleasantness.
Hope this might help someone stuck with this problem

Not directly about caring but associated with it and some may find it helpful.
I have just taken up 24 Hour monitoring cover with two pendants with fall detection as I find it difficult to provide 24/7 watch on my wife.
Clearly one needs 24 hour access for emergency services which in turn means a key safe outside. Having spent a large part of my working life buying Hardware I have always been wary of key safes fearing that they can advertise that there are vulnerable people in the property, however needs must etc. Further I was concerned that fitting the safe, a job that only 5 years ago would have taken 30 minutes, might be beyond my present capability. My fears proved to be groundless, I bought a Police approved box with cover, cost a bit more but definitely worth it, and with the modern fixing screws, supplied, fixing was simple although took a bit longer, just over the hour with careful planning and rests.
Hope someone will find this helpful, any questions please ask or if you prefer PM me.

A reminder and a link to the form, for anyone who’s cared for is of pension age or older.
As stated elsewhere it is not means tested and may assist the cared for and their carer in gaining other assistance.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1143363/aa1-interactive-claim-form.pdf

We are now moving into a different stage of wife's Parkinson's, her legs have now contracted in a bent condition so that she cannot support herself so the Zimmer frame and the standing hoists have been returned along with the tall toilet seat.
I have purchased a wheeled shower chair that doubles as a toilet seat and this is her means of moving around inside the house.
Our bedroom now resembles a factory with an overhead crane, I've had to move into another room to sleep. Her dementia is getting worse plus she's more demanding and comes out with the strangest things sometimes, surprisingly she remains in good spirits.
I've bought her a powered wheelchair after pushing her around Pensthorpe (a nature reserve with lots of birds) which tired me out with the gravel paths. She cannot drive or ride a bike, so the first outing in my driveway she went into the wall 4 time, the flower beds umpteen times and into me twice. The proplem is panicking and not letting go of the joystick that automatically applies the brakes. After I'd arranged insurance for her chair we attempted going up the road, not very successfully but at least the road was not encroached on. Slowly and infrequently trying to get her to use it and then we can start to use the 2mph setting instead of 1mph one.
Cooking is going well, I rarely look at a cook book now, I've purchased a built in induction hob to replace the portable one and I'm very pleased with it.
The subject of a small lapdog came up and we hovered right up until we were going to the rescue centre when wifey panicked and said no, so I did the next best thing and bought an expensive fully automatic bean to cup coffee machine instead, wasn't a bad buy either as wifey a devoted tea drinker now likes a cappuccino a couple of times a day. We now use an extra 2 litres of milk a week.
Our wheel in shower is starting to be fitted on Monday after removing the bath, there also going to fit slimline cabinets with wash basin and toilet, this will make life easier.

The Hidden Caring Role (copied from my carers Facebook group)

As many of you know we care for my people with Parkinson’s Disease and
Dementia. On the face of things they function well and we are lucky we
can still go out and do things and have what looks like a pretty ‘normal’
life.
What you probably don’t realise is that behind the scenes a whole lot
goes on to make things happen but you don’t see these things and how
they frustrate and tire us both out.

We recently had Carers Week. I thought it was a good opportunity to
highlight carers who on the surface appear to be coping brilliantly but
underneath are trying to cope with so many hidden challenges. Maybe
you have a friend or relative who is a carer and this may shed light on
their lifestyle.

I belong to a Facebook group for people who partner with someone with
Parkinson’s (many of whom also have dementia) and I asked them for
their hidden challenges.I had nearly 80 responses so it’s an emotive topic.
You may be surprised at this list. There will be things in there that haven’t
even crossed your mind. Not everyone deals with all this all of the time
but it is an extensive ‘job description’!!!

The hidden challenges of caring.

• Constantly having to think and plan for two people
• Arranging and being their advocate at every medical appointment
–not just a GP or Neurologist but the affiliated appointments such
as physio, mental health, podiatry, orthotics, dementia nurse,
continence service etc etc.
• Helping them deal with their anxiety (which is often heightened
with Parkinson’s).
• Trying not to show your own emotions as they can’t cope with you
being upset
• Ordering seemingly endless medication and managing it ensuring
all medication is given correctly and in a timely way
Watching their diet both for the swallowing/choking risk and also
for the effect it has on their digestive system.
• Dealing with constipation/diarrhoea including thinking and
planning ahead if going out.
• Making sure you have bought continence equipment such as pads,
waterproof bedding etc – just in case.
• Providing reassurance if they are disorientated or confused
• Explaining things over and over again as memory deteriorates.
• Helping to support them if they hallucinate – reassuring them that
no-one is in the house and they are safe
• Feeling ‘jealous’ that friends can just ‘go’ whereas we have to plan
and organise to the n’th degree. Being impromptu or travelling light
is not an option.
• Helping them dress
• Cutting their nails
• Sorting out hearings aids – putting them in, cleaning them, changing
the batteries, ordering new parts
• Driving them to every appointment
• Not being able to prioritise whatever you need to do as if they need
us we have to drop everything
• Getting up in the night with them to help with toiletting or to
change beds when accidents occur
• Endless washing
• Being careful what information you give them as too much notice of
appointments or events can cause unnecessary anxiety
• Helping them do exercises provided by physio
• Motivate them to get active rather than just snoozing in front of the
tv
• Help find ‘meaningful’ tasks so they feel they are being helpful and
have a fulfilled day when they can no longer do things they used to
do
• Helping them with tasks so they feel they’ve achieved something
even at the expense of you getting your tasks done.
• Carrying bags whilst out and ensuring they can walk or use a
wheelchair safely
• Manhandling the wheelchair if they use one
• Asking for help for them eg when travelling
• Planning every trip out route planning, driving, finding parking,
checking ahead for disabled spaces etc
• Dealing with all paperwork including insurance, banking,
appointments…
• Organising and dealing with property maintenance locating and
booking tradesmen, dealing with them and paying them.
• Chasing up appointments if they can’t manage the phone or email
• Dealing with ‘the system’ as not every professional acts in a timely
or correct way.
• Dreading the post arriving/phone going for yet more appointments
or things to sort out.
• Constantly feeling overwhelmed by the responsibility
• Wanting to go out and do ‘nice’ things and make memories but not
being able to face the gargantuan amount of effort it takes to
organise days out/holidays and the tiredness when you get back.
• Constantly watching for new symptoms to ensure nothing gets
missed – not assuming all issues are due to Parkinson’s
• Helping to moisturise skin, legs and feet especially checking for
sores or damage
• Ensuring they wear a hat and sun cream and drink plenty in the
heat
• Making sure they have hat, scarf and gloves when it’s cold.
• Constantly keeping an eye on them to check they are safe. Not
leaving them on their own and needing to organise someone to be
with them so you can go out alone.
• Help with washing, shaving and personal care.
• Organising their clothes as they can’t always chose appropriate
items for the weather/activity
• Finding things they’ve lost time and time again.
• Feeling upset when you witness someone of a similar age achieve
basic tasks like buying shopping or putting fuel in the car knowing
your loved one will never do that again.
• Buying your own Birthday and Christmas presents as they cannot
shop alone or order online
• Having to take over the tasks they thought of as theirs – car
maintenance, gardening, cooking and washing for example
Feeling lonely even when they are sat next to you as their
comprehension and conversation diminishes.
• Making decisions as they can’t do it for themselves.
• Wording questions in a meaningful way because an open question
such as ‘what do you want for dinner?’ will not elicit a suitable
answer
• Answering the same questions time and time again
• Trying to keep up with what they are asking as their train of thought
jumps around
• Filling in missing words when they can’t articulate well
• Trying to calm their frustration when they can’t make themselves
understood
• Dealing with fluctuations in movement as medication wears off.
Freezing or becoming ‘stuck’ can be common
• Trying to keep to a routine that makes them feel comfortable and
secure.
• Sundowning- when they deteriorate late in the day – thinking they
are in the wrong house or wrong bedroom. Dealing with aggression
or distress that goes with this.
• Grieving for the person they used to be that you’ve lost
• Losing yourself and feeling that your relationship with them has
changed.
• Not being able to relax and enjoy things as you’re permanently ‘on
call’
• Trying to keep them safe and double checking everything such as if
they use the kitchen. Making sure they haven’t unplugged the
freezer or fridge
• Finding kitchen items in strange places. I’ve given up counting how
often I’ve rearranged the cutlery drawer to put things where I can
find them!
• Taking over all the household chores as they fail to remember how
to work the washing machine, microwave or dishwasher
• Having them follow you around so you can’t get on with things that
need your concentration.
• Having little if any time to do the things you used to enjoy
• Friends ‘dropping’ you as they can’t deal with the deterioration and
you can’t join in like you used to. The loneliness that goes with it.
• Constantly repeating things
• Trying hard not to snap when you’re tired and frustrated. Speaking
to them with your ‘Disney Princess’ voice and not your Cruella De
Ville voice!
• Liaising with and booking care providers if used. Dealing with
invoices or employment law if employed directly
• Trying to make out to friends and family that you’re fine (even when
you’re not)

If you’ve got to the end of this list well done! Not everyone experiences
all of these all the time but the consensus was they are all part of the role.

One person summed it up as this:-
“ Having to control their life as they can't make their own decisions but
having no control over your own life. “

As this came up in another group I thought I would share information regarding this process and the link also mentions how some authorities, staff etc still do not really understand how it works

https://www.cqc.org.uk/publications/major-report/soc201920_1g_dols

My own Mothers DOLS is renewed each year. I am contacted annually to discuss and agree it’s continuation

I have just been nosing around on the Government Website re cost of living payments and discovered that my MiL should have received £400 as she pays her own care home fees. She hasn’t received this. This is the Energy Bill Support Payment. DEADLINE for application is 31st MAY. This info might be useful for someone.

https://online.apply-for-energy-bill-alternative-funds.service.gov.uk/s/#eligible-for-ebss-af

Just thought I'd bring you all up to date on our situation, Jackie is just about capable of moving now as shown in clip, although she tires in the evening and I wheel her around for abloutions and bed. We've just got a quote to remove the bath and fit a wheel in shower, I supply the tiles where the bath was and was happy to see it was only £3.1k from a local disability specialist building company.
Her dementia is holding its own by her medication thankfully, our local Parkinson's group is running a voice course for 8 weeks and Jackie is signed up for it as she is very quietly spoken as she speaks into her chest, thankfully she's still aware and in good spirits.
I belong to a Parkinson's Facebook group for supporting carers, compared to other carers I've got it easy but some are at the end of their tether, one today ended up with the Samaritans others make you laugh or cry, it's a good outlet for frustration and anger.
You may remember I've had dogs for most of my life, when our last one passed 4 years ago Jackie didn't want another one because as we know now her instability was beginning to appear. Now it is not so much, or soon to be not an issue so I broached the idea of a rescue companion dog i.e. cavalier or bischon frisé sort as company for her when I'm out. After some yes, yes, maybe, no I've decided to get myself a nice one button fully automatic coffee machine instead 😜
Quite the accomplished cook now, I make old fashioned bread pudding that seems to go down well with all our family and even had to make one for Jackie's knit and natter group, all done in the ninja.

Have I posted this before? Can`t recall 🤣 Worth repetion! This is such a nice caring group,no disagreements, no trolls, very little judgement. Just sympathetic ears, some people who understand to have a rant with, information, others who are doing it and understand better how to do certain things you`ve never done before or tricks to help you cope. Allsorts and all positive.
https://www.facebook.com/groups/701216963312629?hoisted_section_header_type=recently_seen&multi_permalinks=5546548498779427
But boy are there some sad stories and so many carers getting isolated and exhausted.

Cancelled 😞
Was so looking forward to this weeks show

https://www.radiotimes.com/tv/entertainment/challenge-anneka-dropped-schedules-channel-5-newsupdate/

Let’s all keep a look out for when it does get rescheduled

Martin Lewis

https://vm.tiktok.com/ZMYVMnS1L/

Although we have discussed this before I hope you will find this explanation and advice helpful

Keeping hands busy can help those with dementia , to stop shaking, pulling, rubbing, gripping or even hitting themselves or others around them

There are toys and activities that can be used to help on this site

https://dailycaring.com/6-ways-to-help-seniors-with-alzheimers-keep-hands-busy/

For any of us who lose track of ‘what day of the week it is’ these clock by dayclox are ideal and a much more reasonable price than that offered on Amazon. They are battery operated and if you are buying for someone who has a disability there is a simple form to fill in to take off VAT

https://www.dayclox.com/dayclocks.html

Says wife of actor Bruce Willis

https://news.sky.com/story/bruce-williss-wife-asks-paparazzi-to-keep-your-space-and-not-yell-at-him-after-dementia-diagnosis-12827548