Monday draws ever nearer and I’m getting really excited about seeing my mum and family in Coventry, after such a long time.   However, my excitement isn’t just about seeing family.  It is also because on Monday I will be a relative popping in to see a family member who has dementia.  This should help me to empathise with those relatives who pop in here.  It gives me an opportunity to think about how we can make their visits compatible with our approach to dementia.

In need to seek advice from those ‘on the ground’, my two sisters, to help me plan my visit to Coventry.  How long should I stay with mum; what is the best time of day to visit?  What is the best way for me to behave when I see her again and much more…?  When I’m on site I can also have a chat with her carers, and fit in with the way they go on.

It’s a similar story with my brother.  I hope his wife will join our little get together at lunch- time, so I can catch up with her.  She will be able to help me to get up to speed on what has been going on, and what to expect now John has moved rooms.  There have been changes in his Nursing Home and he has been moved upstairs into slightly better surroundings.

I also want to see if I can use music in any way during my visit.  Again I will seek advice from those on the ground before I play a few tunes.  It’s just a sneaky feeling that mum will tap her feet if I play some Sinatra.  John may well leap out of his chair to Bill Hayley – if only!  I will take advice before I wade in and disturb the status quo in the lives of mum and John.

It would be hypocritical of me to barge into my mum’s and John’s Homes without asking those on the ground how to go on.  How on earth can I expect our visitors us to take any notice of the ‘man on the ground’ here if I don’t take notice of those who know what is going on in Coventry?

With Christmas drawing closer we  needed something to help us sort out our plans and  a Web Site I discovered yesterday has come to our rescue.  I have copied a 12 point guide below from the unforgettable org  and made a note after each point to help our plans for the Festive Season:

‘If a loved one has dementia you might be worried about how they’ll cope during the festive season. Read our simple guide to help you make Christmas as enjoyable as possible – for everyone.

1. Have a plan

Taking a, ‘let’s see what happens’ approach to the festive season isn’t going to work when you’re caring for someone with dementia. Spontaneous visits can be stressful so make sure to contact anyone who usually drops by (and who your loved one will definitely want to see) and organise dates and times in advance.  Need to chase up potential visitors.

2. Trust your instinct

It’s not too late to change a plan you may have agreed to initially but which you’re now worried about. For example, if you’re dreading an overnight stay with Aunty Alice because you know your loved one won’t sleep and could become very unsettled, trust your instinct, confront it now and either cancel the trip or agree to a shorter visit which can be done in a day. Have to control numbers and length of visits

3. Always include them

Whether you’re trying to decide what to buy for the grandchildren or who to visit on Boxing Day, make sure you ask the person with dementia for their opinion, thoughts and ideas. Encourage them to help you too, with thinks like setting the table or writing Christmas cards which will provide a sense of purpose for them. Focus on what they can still do to help and feel part of the festivities (however small that may be) rather than what they can’t do. Began discussions yesterday: need to keep talking.

4. Share the care

The biggest mistake many carers make is trying to do too much, so remember you can’t do everything. Friends and relatives are often willing and able to help but they can’t read your mind and you may have to ask them directly for the sort of help you need. If you’re worried that they could struggle to cope with your loved one’s condition, ask for practical help instead. For example, maybe they could wrap your Christmas presents, do the shopping or tidy the house. Have to be realistic about cards and presents.

5. Eat and drink (and be merry)

Whilst your normal routine may be unworkable at Christmas, especially if you’ve got people staying, your loved one still needs to eat and drink regularly. The last thing you want is for them to develop a urinary tract infection so keep a constant eye on their fluid intake, or if you’re too busy nominate someone else for this role (see Rule 4 above). When it comes to mealtimes, it doesn’t matter if they can’t always use a dining room table – providing they feel comfortable and calm, a tray on their lap is fine.  Keep to normal. routines over food and drink.

6. Help them to relax

Stress is often the trigger for challenging, aggressive behaviour which can be really upsetting at Christmas. So it’s in everyone’s interests to keep the person with dementia feeling relaxed. During the day, encourage them to take a nap if they seem tired, or if the house is too noisy, give them some headphones and let them listen to soothing music. Siestas will continue over the Festive Period.

7. Get outside

You don’t have to be holed up indoors at Christmas, and going outside can bring many physical, psychological and social benefits. Try to get out every day even if it’s just for a ten minute walk in a local park – exploring nature can be a great mood booster. ‘Keep walking’ needs to continue as Maureen’s mantra.

8. Make sleep a priority

People with dementia often have trouble sleeping through the night and this can become even more of a problem at Christmas if there’s lots going on. Try to stick to a familiar bedtime routine wherever possible – whether it’s listening to Radio 4 in bed or drinking a hot chocolate – because it will help them feel safe and secure which is particularly important if they’re sleeping in an unfamiliar environment. Stick to normal bedtimes.

9. Make the most of grandchildren

Grandchildren can bring enormous pleasure to people living with dementia and best of all they’re usually non-judgemental. Find a simple activity they can enjoy together, whether it’s colouring in, doing a jigsaw, playing a game (not a noisy one though) or watching a movie, then sit back and enjoy!  Need to keep numbers manageable – 2 max.

10. Be kind to yourself

No matter how busy you are, it’s really important to make time for yourself over Christmas. If you’re physically and emotionally exhausted, you’re likely to become depressed, resentful or ill, all of which will affect your ability to care properly for a loved one. So put yourself first, even if it’s just for ten minutes each day. Build in some ‘me time’.

11. Stay positive

If despite all your best efforts something still goes wrong, don’t despair. Focus instead on what’s gone right, keep it in perspective and move on. For example, if Christmas Day went pretty well, apart from one angry outburst or upsetting moment, surely that means it was an overall success. Remind yourself that nobody’s perfect and you’re doing the best you can. Always look on the bright side.

12. Treasure each moment

When your memory is no longer reliable all you have left is the present moment. So instead of worrying or stressing about what might happen, try to see Christmas through the eyes of the person with dementia; appreciate and enjoy every single good moment, take photographs or videos to capture them and to remind yourself later what’s really important. Enjoy our time together’.

A phone call from our Care Agency has put me on Red Alert about support for Maureen when I go to Coventry for the day on Monday.  They phoned up late yesterday afternoon to advise me that it may not be possible for our regular carers to be here in my absence.  At least there is a little time to shut the barn door before the horse bolts i.e. Maureen ‘legs it’.

I have no intention of postponing my trip to Coventry again because adequate Care has fallen through. My mum is 94 and I need to see her even though she may be unsure who I am after all this time.  There are several other family members I need to see: including my brother who doesn’t know me any longer with the progression of his Alzheimer’s.  The trip takes on something of a Busman’s Holiday and is a stark reminder of life in a residential establishment: something I will go out of my way to avoid for Maureen.

As our Care Plan has not been revised since August 2014 it is important to get something current in place before my away day.  Fortunately, Chloe, our longest serving carer, made a suggestion yesterday that will really help.  She has plans to draft a summary of how she approaches caring for Maureen.  I have agreed to type Chloe’s draft and run it by Gail, our other regular. This means that any newcomer will have something to read before they launch into their own style of caring.

There is also something I can do to help: develop a Welcome Pack to working with us.  This will include some basic information about our household, and Maureen’s usual daily schedule.  It is important to keep this material short, as carers are in the thick of it once they have clocked in.  If we manage to get all of this in place for Monday I will travel to Coventry with a clear conscience that I have done all I can to prevent Maureen from wanting to ‘leg it’ again. .

In October I outlined my approach to being a Care Partner to Maureen.  Her recovery from stroke continues, as does improvement in her cognitive capacity -neuroplasticity in action.  I am now using  a numbered list to clarify the approach we are taking to life:

1. Maureen’s dementia is not a mental health condition.
2. The brain does find avenues to re route or repair: neuroplasticity.
3. Some recommended supplements are included in our diet: including coconut oil.
4. We take regular exercise:  Maureen has developed her own circuit in our garden.
5. We build cognitive stimulation, and lots of fun, into daily living.
6. We avoid activities that separate and label participants
7. I try to refrain from giving Maureen any bad news: others should do the same.
8. I need to ask relations to keep phone calls short, and never ask questions.
9. I try to avoid saying : ‘Do you remember?’ to Maureen.
10. I try to talk less and listen more.
11. I attempt to grasp Maureen’s reality at any particular moment in time.
12. We play music that has meaning for Maureen.
13. We are trying to simplify our lives and build in more routine.
14. Maureen tires easily and needs plenty of rest.

I am sure I have missed out one or two things from the above list:  after all our approach is a ‘work in progress’. Maureen continues to make excellent progress and we all need to sing from the same hymn sheet to make sure she maximises her recovery from stroke.

When our central heating boiler developed a fault a couple of weeks ago I had a number of conversations with the Heating Engineer.   Craig compared our heating system to: ‘flogging a dead horse’:  it’s nowhere near as efficient or cost effective as it could be with modern radiators to match our boiler.  There are parallels here with Maureen: there is little point in encouraging her to do anything when she is tired.

I now realise that she gets all the stimulation she needs on Monday, Wednesday, and Friday mornings.  When Chloe or Gail are here she is in full flow.  As I sat at the keyboard yesterday morning I could hear Chloe and Maureen catching up on their respective weekends.  Apart from the occasional bit of repetition Maureen was conversing eloquently.  It many ways it was a joy to overhear but part of me thought OMG she’s going to be worn out for the rest of the day.  Maureen rested her eyes as she put it for a couple of hours after lunch, worn out by her morning’s endeavours.

At various times of the day I try all sorts of things to lift Maureen’s mood or provide cognitive stimulation.  Cooking and music go hand in hand.  When the going is good my dance partner will appear and pull me away from a hot stove.  Later in the evening it is unusual if we aren’t singing along to someone or having fun with a crossword.  I have even eased her into using her new glasses, knowing they are still on trial.  All I need to do is: keep a watchful eye on Maureen’s energy levels, stay by her side or she might start ‘packing to go home’, or wander off on one of her walkabouts‘ .

It is easy for me to understand that Maureen tires easily and needs plenty of rest.  What she also does is frequently resort to the Hostess Mode to persuade professional staff and close family that all is well. This may mean that occasional visitors have no idea about how she really is, and often engage her well beyond her physical capacity.  It is difficult for them to understand how fragile she is, as they never see her sleeping for days, after she has kept herself going for their benefit.  One of my tasks is to try to help them understand that she needs periods of rest throughout the day, otherwise their visits lead to days of exhaustion that may well have a long term impact on her wellbeing.

There is already a Code of Conduct for Care Agencies, and Care Staff, with guidance for all interested parties.  I would hope that Hica (our Care Agency) are familiar with these documents.

In future if our regular carers: Chloe, Gail and Gemma and are not available then replacement staff need to have some information about us.  This needs to include details of:  Maureen’s current presentation, personal history, and how we run our household.  They also need to have had considerable experience of supporting clients who have dementia.

It was evident that the carer who arrived on Saturday morning knew nothing about us.  It is fortunate that I decided not to go to Coventry, and Maureen didn’t wake with a stranger in our house.  Maureen’s reaction to this well-meaning elderly lady was to go out for a walk because she is fed up with people she doesn’t know  ‘interfering in our lives’. As she often says: ‘the house is not our home any longer’. Her assertion is just another sign that when she has energy her ability to think rationally and logically is intact.

I made a wise decision to cancel my plans to go to Coventry on Saturday. We also had a very lucky break on the same day:  Maureen’s cousin spotted her heading into Cleethorpes; going in the opposite direction of home.  He pulled up in his car as she was attempting to cross a very busy road.  Terry described Maureen as: ‘looking very confused and exhausted’.  I’m not surprised by his description as she had been walking for well over an hour: ill clad on a very cold and windy day.  I had been out looking for her  around her usual haunts, and I was very relieved to see a note in our letter box saying that she was in his safe hands.

I will be rather reluctant to allow Maureen to run off again: even if it’s to escape from strangers who have been sent her to support her.  However, prevention is always better than a cure, and there is a simple solution to all of this!

As the majority of professional staff are not at work today I will deal with our experiences on Saturday morning tomorrow.   What I am intending to do is to suggest an interim Code of Conduct for Care Agencies and Carers. This will hopefully avoid a stranger arriving on our doorstep, ever again, without: any prior knowledge of Maureen; our set up; or training in dementia awareness.

Todays post is my tentative attempt to help family members be supportive over Christmas.   It is a copy of an Email that I sent yesterday  to clear up any misunderstanding over our capacity during the Festive period:

‘There have been significant changes in Maureen’s presentation in the last couple of weeks.  Periods of confusion are more frequent and intensive.  Maureen tires easily and sleeps a lot.  I disconnect the landline when she is resting.