What care tips worked for you?

Make lists of what works for the patient so he/she doesn't get overwhelmed with options - easier to pick what he/she wants

A welcoming visitor book.
It creates a useful record. You can leave your contact details for neighbours or relatives who you may have lost contact with (if your relative has no offspring) . You are able to create an informal picture of what has been provided until a more formal care package is provided.

Dosset boxes. Available at the pharmacists (Boots etc). Depending upon the persons ability the tablets can be sorted out in these boxes at the beginning of the week.

If you are getting shopping by public transport, 2 wheeled shopping trolleys can enable you to purchase a larger amount of shopping. A good tip for home helps.

Most of all we should get informed about the failings that can come with age related brain failure before relatives and ourselves reach that stage and plan ahead. Not one of us wants strangers intruding on our lives, least of all when we are frail. Obstruction is understandable. But when safety is repeatedly compromised we need to know what we are dealing with, and has this persons brain begun to fail.

Teepa Snow's talk "what is dementia" is an excellent online starting point. An understanding of brain failure, changes how you view these so called 'difficult' people. Instead of focusing on negative traits/behaviours caused by brain injury you can focus on what qualities/capacity remains.

Is the person deliberately refusing to listen to you or are your sentences too long/complex. Does your message need to be simplified / shortened to give them time to take on board what you have said. How well can they process language. Visiting a friend in a care home I listened to a young care worker give a very lengthy explanation as to why she was not to receive something (a shower? I can't recall) because she had been up all night and not done as she was told. My friend listened, nodded politely then came into the room and sat down in front of me and talked giberish for a few minutes. She had no idea what had been said to her. We sat together in silence for a moment then gradually I introduced in brief sentences things she might like to hear. She came too, and gradually we chatted like old times, but i was careful to keep my sentences brief and pace our conversation. She had capacity to process information if it was given to her correctly. The care worker was unaware of this.

When you are confronted with social services telling you nothing can be done to address relatives refusing care support because there is nothing wrong with them, don't accept this at face value. How do they know there is nothing wrong with them? They might be articulate and apparently coherent but can they perform an unfamiliar task for example (vascular dementia). If they continue putting themselves at risk have they been properly evaluated by a health professional? What indicators are there for various types of brain failure? As the health professionals would say: do they have insight? Do they truly grasp the consequences of their decisions (I don't want strangers in my home at any cost).

Who grasps the nettle? Who pays? How is it organised and on what political principles. But whilst this lurches on it would help if care professionals (like Teepa) could get us thinking about this stage in our lives to educate and mentor us.

Thank you Hithere, this would be helpful for those with more profound brain injury.

I fund it helpful to keep, as far as I could, a picture in my head of my mum when she was young and energetic. I know this doesn't work for some, but it helped especially when I had to deal with difficult decisions.
When she said 'I'm not going to get better am I?', I said 'no, but we love you and are going to look after you'. The carer who was present said that they were told not to say that. I said ' I know my mum always wanted honesty and to be sensible' and indeed, she nodded and hugged me.
Similarly, remembering how she handled us, and other children who were messing about, I knew she wanted ''come on, we're going to shower room' rather than 'do you want a shower?'

Yes, definitely keeping the better memories alive. My dad barely changed, but part of my aunt changed for the worse. I thought that she was showing me her true nature; how wrong I was.

Nannarose that hug must have meant so much. Coming from the person that loves them and knows them best, honesty is definitely the best policy. If it can be done it is a wonderful act of kindness and gives them reassurance that they don't have to guess what is coming next. This couldn't be done for my aunt because she was not very resilient. But I was direct with my father who really appreciated it. It helped that he guessed the chest doctors were spinning him a line at the first meeting (did you believe that?) and was ready with his decisions regarding cancer treatment when it was disclosed at his second meeting; all at the age of 90yrs. The NHS's guarded approach to disclosing bad news goes way back, but it is changing.

The shower advice is brilliant, taking decisions out of the equation when it has become a struggle.

Podiatry
I have just remembered something else. When I began taking my father to the Podiatrist I asked what tools were used (boots) and how they dealt with holding his sensitive feet (firmly) as he would never keep still for me. As the appointment dates took longer to come through I was able to step in and cut his toenails between appointments.

We had a king sized bed with king sized duvet. I moved to the spare room when my husband’s vivid dreams were keeping me awake. He often got tangled in the king size duvet acting out his dreams until I changed it for a double - such a small change but actually so much easier to manage.

Hello Thoro, did your husband have early onset dementia?

I like the whiteboard but I'd be bored by a determinedly cheerful companion.

To enable my mum to live independently with dementia, we used technology where possible. We had doorbell cameras, security cameras we could communicate through, Hive heating controls, call blockers and a WhatsApp group to keep in touch with carers. A lot of this was to protect mum from getting scammed, I’m convinced she was on a scanners list as she got so many phone calls and people at the door asking her to buy things or to give them money.

If this is a worry, scratch off the cvc numbers from the back of a credit or debit card so they cannot be used over the phone.

The other major thing to do is to get Power of Attorney set up as soon as possible.

thorns, no he was 75 when diagnosed- not old but not early onset - he’s 77 now.

Just realised I hadn’t put my husband was diagnosed with vascular dementia in 2020.

Teacheranne, Best advice was the credit card, we worried about this but in the end my fathers deafness prevented him being taken advantage of. I like the IT approach (I am still learning). We contacted the Telephone Preference Service to stop unsolicited phone calls for my father in law.

Thoro . Yes, I had to put my thinking cap on when I read vivid dreams .

"determinedly cheerful companion."

Caleo, is it being so cheerful that keeps you going?

The boredom works both ways. Determined through gritted teeth sometimes. Not so much Joyce Grenfell, Caleo, more kicking the record player to jump the needle (predictability and repetition). A bracing walk, nature, the architecture around us, what they are reading. I love history and had access to oral testimony starting from 1915: a WW1 childhood, working conditions in the Land Army, the challenges she had to deal with from farmers and family (no daughter of mine is going to wear trousers). My fathers' recollection of the 'Depression' on Tyneside, a WW2 childhood as well as tales from elders he knew including one relating to the Boer War. The majority of these memories were humorous and far more interesting than anything on tv. They were interesting people.

In both cases (my mother and my FiL) it was dementia, but what helped us early on was realising and accepting that no matter what we did or tried, neither of them was ever going to be able to remember anything. They might look at a notice in nice big clear print, but as soon as they’d turned their heads away, they’d have forgotten.

Ditto e.g. phoning to remind them to take medication.
As soon as they’d put the phone down, they’d have forgotten.

When FiL was living with us, he would ask the same question over and over and over - I once counted 35 times in one hour.

I’m not a particularly patient person, and the slightest show of irritation was apt to provoke a rage, so I had to learn to make a sort of separate compartment in my head, where I could go on answering nicely, but mechanically,

I’m still not sure how I managed it, but the alternative could well have been FiLicide!