https://www.changing-places.org/

I wasn’t sure whether it was relevant to put this in the group or in Anything.

Ben Spencer , raising awareness of Ataxia

Maybe a carer of someone with Ataxia, or someone with it, may be interested.

https://www.bbc.co.uk/news/uk-england-london-64630642.amp

The Herbert Protocol is a national scheme that encourages carers, family and friends to provide and put together useful information, which can then be used in the event of a vulnerable person going missing.

Carers and/or relatives and friends can complete a form in advance, including important information about the missing individual such as the contact numbers, medication needed, and also a photograph can be provided.

The form can be easily sent or handed to the police in the event of a loved one going missing, reducing the time to gather this information.

More information here: https://bit.ly/3J5e0Fw

Just came across this website and thought it might be useful if someone has difficulty/needs help with dressing.

https://www.theablelabel.com/

♥️. If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.

1. If I get dementia, I want my friends and family to embrace my reality.
2. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.
4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
6. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
8. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
9. If I get dementia, ask me to tell you a story from my past.
10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
11. If I get dementia, treat me the way that you would want to be treated.
12. If I get dementia, make sure that there are plenty of snacks for me in the house. If I have dementia, I may have trouble explaining what I need.
13. If I get dementia, don’t talk about me as if I’m not in the room.
14. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you.
15. If I get dementia, and I live in a dementia care community, please visit me often.
16. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
17. If I get dementia, make sure I always have my favorite music playing within earshot.
18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
19. If I get dementia, don’t exclude me from parties and family gatherings.
20. If I get dementia, know that I still like receiving hugs or handshakes.
21. If I get dementia, remember that I am still the person you know and love.”

https://petition.parliament.uk/petitions/627740

Posting this here on behalf of another member not in this group

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

This sounds promising. I read about ghe Dutch homes quite a few years ago.

https://www.theguardian.com/society/2022/dec/30/dementia-village-in-warwick-is-a-pioneer-in-person-centred-care?

Let’s discuss this phenomenon, common in those that have a diagnosis of dementia.

My Mother, with vascular dementia, exhibited this almost every day. Starting around 4.30-5pm.

https://www.aarp.org/caregiving/health/info-2017/ways-to-manage-sundown-syndrome.html

We managed this in different ways, which could depend on the time of year, the weather and with various distraction techniques. As her dementia progressed it became more difficult to cope with without medication.

A friends husband would become very agitated . Moving and sometimes damaging furniture in their home.

Has anyone any experience of personal alarms. I am looking for a pendant watch type alarm that would make contact with various family mobiles in the event of a fall or need for assistance.
I know Age UK has such a service but think it goes through a call centre and has an involved set up system.
Am considering CPR Guardian III SOS Personal alarm watch and will be contacting them soon to discuss the product.
In the meantime, any views or comments from you knowledgeable folk?

Many years ago we had a BT landline for my mum with an emergency button—- plus pendant/watch to wear — that made contact with us via mobiles whenever assistance was required. We could talk to her via the phone without her ringing us when button pressed.
Obviously now things have moved on and alerts for falls or for moving out of a designated area are all programmed into a device. I want something simple but also competent to give me piece of mind when I leave my husband on his own .

Thanks everyone.

My husband is 92, virtually deaf, with mobility issues and has prostate cancer that has gone into his bones.
He had a fall at home when unattended and has shown a definite decline in speech, shakiness and urine output. We don’t think it was a stroke but he was very shaken with skin damage.
Having read that if standing becomes an issue with prostate cancer( compression) you need to get medical help quickly I emailed the surgery about our concerns.
The quick response team sent a nurse to log all the problems and she left, telling us we needed to get him to A @ E . It was the cattle market as usual there and after hauling him into a car we sat for 3 and a half hours getting nowhere in the system and hauled him back home again when he asked continuously to leave.
what does one do??

Maybe useful for carers to find independence aids for their cared for

https://www.completecareshop.co.uk/daily-living-aids/dressing-aids

From assisting with doing up buttons to non tilt trays !

After several years of me telling my sister to get a walker (she hates them), she's finally given in and bought one. Now she can get to the Marks in the garage just along the road and get a few things.

Of course, there's something wrong with it all - she has to go in the lift which she hates and she can't carry a basket and push the walker so she can't get much.

Arrrggghh!! I need wine and chocolate!!!

I am sure most members of this group
Are aware, and may already have a Power of Attorney for their loved one. But for anyone who hasn’t here is the link to the details and forms .
I would advise that anyone doing this download all the advice and information sheets before filling in either or both of the POA’s.
Most people used to do this through a solicitor but it can be very expensive and now it is all online, it is reasonably easy to
do. However it must be done in the Donors name (cared for) to record their wishes and choices for both health and finances .
The person named to take on the care of the donors wishes when required is called the ‘The Attorney’
Our ‘Donor’ was advised , and was happy, not to make their choices complicated , leaving most choices to the ‘Attorneys’ as she fully trusted us to only act in her best interests at all times .

https://www.gov.uk/power-of-attorney/choose

My daughter presented us with this second hand sturdy shower chair/commode to assist us. Unfortunately it is too wide to fit in our bath and my husband insists he will not use a commode!
It has removal back and arms.The chair has good wheels for moving it around but one break flap seems to be missing from one of the front wheels.
If it could be of use to anyone who can collect from the Coney Hall area, please reply to me and I will take some photos and take measurements.
It might help someone out?

Originally typed that one arm was loose but have edited that. I hadn’t screwed it in place properly!! It is fine and can be secured.

Has anyone else found finding a venue for this autumn Covid booster more difficult? Previous doses have been available at centres where disabled parking and wheelchair access was easy. This time on looking online for such requirements I am presented with mainly a list of small chemists on busy roads ( and none very local) where I feel nervous about finding an empty parking space with the possibility of having to wheel my husband across a main road.
In desperation I searched again for a place WITHOUT any requirements and found a centre I once attended for myself. You have to park in a multi-storey car park with a lift and come out near a Health Centre that has a ramp so have booked hoping the lifts are not broken. I just don’t understand why I was not offered this on my search with disability requirements!
As for the 119 phone line!!! Two attempts battling multiple choices and endless information recordings and then both times I was cut off whilst speaking with the assistant at the call centre! Life is stressful enough without this sort of experience.

Has anyone got experience they would like to share about encouraging their cared for to eat.

I found in the early days, My Mother was advised to eat healthily, supposedly to slow down her dementia! She was, as we all are, also advised to drink more as her brain was dehydrated! She ignored all of this advice even though we stickered almost every surface with reminders and when she did eat she did so with gusto. Later changed - she literally lost all motivation and forgot to eat. Struggled with holding cutlery

My advice would be (if your loved one is losing weight)
Don’t worry about set mealtimes
Offer snacks
Don’t remove food or take food away just because they say no initially.
Offer bright coloured food
Stop worrying about healthy food let them eat anything they fancy even if that’s Jaffa cakes or bacon for every meal. You can always give build up drinks or add vitamins in other ways.

Here’s an online shop , not one I have personally used, that have useful items and ideas for those who are finding they are having difficulty around the home or are carers.

Do any members have any recommendations for good online companies

https://www.essentialaids.com/kitchen-aids-feeding-aids/kettle-tippers-teapots.html

https://www.parkinsons.org.uk/news/everyone-active-offers-free-membership-people-parkinsons-and-their-carers

Never cook when tired.

Picked some rhubarb from the garden, chopped and washed it, place it in a saucepan with water, sugar and 2 cinnamon sticks, put on gas and promptly fell asleep.
Woke up to a burning smell!! (first picture)
After 1 hour separating lid from pan then scraping and cleaning the inside of pan and lid were passable. (2nd picture)
Got more rhubarb from garden and repeat with added brandy, (picture 3)
Finished product. (last picture)

I took my wife to our first meeting of the local Parkinson's support group, was quite interesting and informative although I struggled to stay awake during the speakers memories of being a policeman in the 60's.
Tea and cake were welcome and I got chatting to a few, plus we are booked on their coach trip next month with dinner on route.
Wife has stabilised a little, and my cooking skills have expanded to using an air fryer. (Amazon prime day offer)

This link was posted in another group after a discussion on whether benefits stopped during hospital stays and may also be useful for members of this group

https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/your-hospital-stay/

https://www.scooploop.com/thread/queens-theatre-hornchurch-memory-club-for

As a carer you may need to apply or assist your cared for to claim this allowance. Unless you already have power of attorney it is easier if the cared for can sign the form themselves . It is also easier if you have a recent copy of a medical assessment . Otherwise the authorities will contact the cared for’s GP or Consultant for evidence . This may take longer but the allowance will be backdated.
This allowance is for people who are pension age .

https://www.gov.uk/attendance-allowance

As time is running away for my husband I have a desire to get him to Eastbourne for a couple of days in September. I am just putting out a plea for any information or comments about accommodation that allows easy access for a wheelchair and that has showers with stool/seat that would be suitable for him in Eastbourne. I am googling hotels etc myself but if anyone has personal knowledge that might advise me I would love to hear. Thank you for reading.

Besides contacting Carers Uk or Carers Trust we found it more helpful to contact and register with the local organisation or group (if you have one) in your area.

They often provide clubs, may provide befrienders and respite, do assessments and assist with grants

You may also find that depending on the illness, disability or condition your loved one suffers from that there may be a further carers group within their organisation, such as Alzheimer’s and Dementia, Parkinson’s, Heart attack and Strokes. Some offer excellent training , support and even counselling sessions.

http://www.carerssupport.org/

This is a service I used with Dad when he had appointments but had become unable to walk to the bus stop. The cost is about the same as a taxi, and there is an extra cost if they wait for you then take you home.
When dad had hospital appointments that were going to take some time, we agreed with our "Daisy" that she didn't need to wait but we would call her mobile when we needed picking up. That worked well for all parties. She fitted in another job and although we had to wait half hour for her to come back for us, at least we weren't waiting all day for the dial a ride.
If the disabled or elderly person is on their own, the Daisy also acts as a companion.
https://drivingmissdaisy.co.uk/

Finding pushing my husband on anything but level ground rather hard work now I purchased a motor that clips underneath with battery pack which is very heavy and so has only partly solved the problem. Then saw this expensive model. The ypush wheelchair. I hope the link below works https://store.easylivingmobility.co.uk/shop/wheelchairs/powered-add-ons/ypush-wheelchair. Have any of you any experience of this model?

We have rapidly gone from a carefree couple disappointed that our planned cruise to the Caribbean was cancelled due to the outbreak of covid to a full-time carer for my wife diagnosed with vascular Parkinson's plus a severely curved spine topped off with a dropped head, she is wasting away in front of me as she is losing the ability to control her limbs to get out of a chair without help or shuffle slowly with her zimmer frame, now dementia is noticable caused by Parkinson's. I now dress, wash, feed and care for her most of the time.
My biggest gripe is that the lack of information from the hospital doctors or nurses, our GP and practice nurses on the available help and assistance that has cost me a lot of money buying equipment that could of been provided free of charge! Why is there not a pack explaining all this at first diagnosis?
We now have been supplied with a medical bed, commode, tilting chair, adjustable table and chair for eating and a bath lift, all items I'd purchased myself commercially, the supplied items are superior and better for her condition.
Fortunately I've always been a positive person and still in good health but I'm now starting to feel the strain as she becomes more demanding. I am aware that I have to look after myself and I will walk around the block when it gets on top of me, plus I have friends round each week for a bridge session, I manage a game of bowls on a Saturday morning whilst a neighbor visits and I still get a few longer walks in each week.
On top of all this at 77 from being a typical lazy guy that only took the bins out every week, I now completely run the house, shopping, cooking, laundry etc, I've hired a gardener and a cleaner and a hairdresser and chiropodist both come regularly.
Without realising it my wife frequently asks me to do things either whilst I'm doing something else or when I've just sat down for a break, because she can't raise her head her speech is muffled and quiet, she is also now hard of hearing even with new hearing aids so I speak louder if not in line of sight, I am then sometimes told not to shout and she'll get upset and cry! This is upsetting for both of us. Although she has a wheelchair she has no strength to manoeuvre it herself so I have to push it everywhere we go, I often offer to take her for a walk round the block or the local park but 95% of the time she declines preferring to stay at home. She does go to a craft class for 4hrs and knit and natter class for 2hrs each week which gives her the vital social interaction.
She says she is fine but she's frustrated because of all the things she can no longer do, I've tried smaller sized large piece jigsaws but I help as she can't seem to manage them now.
We have not been away since pre covid, but are planning to attend a wedding in October at Aylesbury and continuing on to Wiltshire and Somerset for a week staying with my sister who has a bungalow. A much needed break we're both looking forward to, I just hope she doesn't deteriate more before we go, she eats by lifting food up into her mouth, sucking from a spoon. She drops a lot, will be fun in the hotel restaurant and reception.


There is so much more but I'd better get to bed and get some sleep.

Have you got an emergency plan in place is, as a carer for someone, you become unwell or have an accident? Being the lone carer for someone means there isn't always someone to contact in an emergency.
This is why Carers UK encourage carers to have a written plan. For example, I you care for someone with Dementia and you suddenly become unwell, your loved one would probably have to be put Into respite care as a temp measure instead of someone contacting a trusted friend or family member.If you are unconscious you may not even be able to voice the fact you are the sole carer of a loved one.
The link below takes you through the steps of setting up an emergency plan, or your local Carers UK can help you

https://carersdigital.org/mybackup/

When caring for a loved one it is important and invaluable to find out whether there is assistance available to help you in your role.
This may include equipment such as handrails, bath seats, rising chairs or beds.

https://www.gov.uk/apply-needs-assessment-social-services

Can any member tell the group if a needs assessment was carried out and whether it was applied for or happened due to the cared for returning from a hospital stay.

What were the results and what help was offered or supplied after the assessment?

As the moderator of the group, I wish to welcome members and those who may be reading this to the creation and opening of this group.

I hope that this group will be calm, compassionate and that all members will be respectful of others at all times.

Hopefully it will be useful to current Carers, those who know that they will be taking on that role shortly and those who have had that role in the past. Also to those who wish to understand the role of a Carer and to those who are working with or have worked with Carers and the Cared for.

Useful information and availability of local support groups will be appreciated, as well as advice on applying for and gaining assistance.

I hope there will no disagreements and ask that members do not carry over an ill feeling with another member into this group.

Please always be aware that we are all different and our circumstances vary widely.

Be kind to each other
Thank you