Category Archives: General

Dementia: Progress Thanks To Propolis

Image result for propolis picturesTwelve hours on since sounding the alarm this morning and things have moved on.  Propolis always seems to do the trick when I have an infection by reducing unpleasant symptoms very quickly.

I have managed to move a few things on today that should make our lives simpler and safer:

  •  My Lap Top has been fixed so I can stay by Maureen’ side when I’m blogging etc.
  • The mattress is now back in the lounge so I should get more refreshing rest at night.
  • My Carers Assessment will resume on Thursday morning.
  • I have made suggestions to our social worker about how to progress Day Care for Maureen.

Dementia: A Better Way Forward

I drafted this last night before the infection began to take me down.

As the bruises have faded and the pain in her back has eased, Maureen’s recollection of a few days in Ladysmith Care Home appear to have been erased from her memory.  In fact as far as I can see Maureen is back to her old self, and doesn’t appear to have sustained any long term damage from being placed in a setting that was totally unsuitable to her needs.  As I have said before my respite turned into her worst nightmare.  When time is on my side I will raise a number of concerns about Maureen’s experience in Ladysmith Road in appropriate circles..

It seems likely that there is an emerging consensus about what is in Maureen’s Best Interest regarding future care and accommodation.  My suggestions regarding Day Care and Respite at Royal Court Care Home have been well received.   I’m hoping that a Best Interest decision can be made as soon as possible so we can develop a strategy to bring those ideas into action with the minimum of distress.

 

Dementia: SOS

A very early morning post:

I feel unwell this morning and have already sent up distress flares to Focus Adult Social Care.  Our social worker will be alerted to my concerns as soon as he switches on his computer this morning.

Another night on the longe floor may not have helped as I feel unsteady on my feet this morning with flu like symptoms.  I should be able to hold the fort until Charlotte arrives at 10 am and then take to my bed to try to speed up my recovery.  This seems more than a cold and I took propolis (a natural remedy) last night and will have another does shortly.  We also have plenty of paracetamol in stock and that should help to bring my temperature down.

Maureen’s maternal instinct will want to come to my rescue this morning but danger lurks on several fronts.  She is no longer safe alone in the kitchen and electricity and water do not mix.  Her other shortcoming is that she may forget where I am when I’m lying in bed and go out looking for me.   Yesterday I had to usher away from number 29’s back door and entice her out of the porch the other side as she tried to return to our house after putting washing on the line.

 This could be an opportunity to introduce Maureen to Day Care at Royal Court Care Home.

 

Dementia: Left Alone

Maureen left me last night as I remained on the lounge floor after she had been sleeping on the sofa.  The good news is she went upstairs and got into bed.  Its early days but that photo on the bedroom door might just be the answer to Maureen knowing where to sleep at night.  Once she climbs into bed she gains comfort from a pillow case that she believes her mum embroidered and a quilt cover with a similar pattern.  I sleep a partition wall away in the spare bedroom and hope to share tea in Maureen’s bed in the morning.

Dianne our new Carer has been a breath of fresh air making such a difference to our weekend.  She has a wealth of relevant experience as she has previously worked in a Care Home where dementia was prominent.  Her rapport with Maureen has been excellent and entirely person-centred.  It didn’t take me long to realise that Maureen would be well looked after and I managed some time out on Saturday and Sunday.  I will be in contact with our social worker this morning to try to make sure Dianne becomes a regular in our team of carers.

It was good to catch up with so many ‘Coventry Kids’ yesterday.  Our phone was in constant use, while Maureen had an afternoon nap, with chat about the ‘Sky Blues’ first match (defeat) of the season and the state of the nation.  It’s reassuring that extremely busy folk with complications in their own lives still find time to chat whenever I make contact: sincere thanks to you all.

Chloe one of our regulars will be here at 10 am and that will create an opportunity to make it to the Leisure Centre this morning for a little exercise and to enjoy the warmth of the Spa and Sauna.  It’s a while since I’ve been down that way and it will be good to catch up with some old friends.  One of the things that I miss now Maureen has dementia is an opportunity to talk about current affairs and there is always lively chat in the Health Suite.

Maureen will be pleased to see Chloe this morning as she thought Dianne was here to check up on us to see if there was anything for the authorities to be concerned about.  I suppose it is natural to be suspicious about any new face when you have dementia and fear that everyone is conspiring to lock you away and throw away the key.  Her suspicions are hardly surprising after the events of the last couple of weeks.

It looks like it’s going to be another long day as Maureen has been up since 3.30 am.  I need to take advice to see if there is anything more I can do to regulate her sleep pattern, as these unsocial hours take some getting used to.  The positive thing today is that at 5.30 am Maureen is laughing at herself after waking up from a dream that she is late for an operation to remove her appendix.  She has also remembered that she doesn’t have to go to school today.  Who knows what she will be thinking about after she finishes putting washing on the line as I close this post.

Dementia: Independence v Safety

Maureen often walks around the garden and on her final stretch holds onto the washing line as she completes her circuit.  I have now stuck a copy of this photo onto the marital bedroom door to help her identify it as a safe place to sleep.

It is important to avoid her feeling that she is ever locked in so I have told her where we keep keys for the front and back doors.  Hopefully this will help her to retain a semblance of independence: it’s her house so she should have access to keys.  When she goes out by herself she is looking for me; which is fundamentally different to aimless wandering.  When I know I’m going to be out of sight I take two precautionary measures; switching on the Baby Monitor and leaving  details of my whereabouts on a whiteboard.

Just to be on the safe side I resumed camping  on the lounge floor last night.  My new system worked as I ushered Maureen up to her room at 1 am  and she clearly liked having her photograph on the bedroom door.

We have spent the last couple of hours listening to YouTube.  When I put on our Songbird

I saw the sadness in Maureen’s eyes: she misses Maeve as she is the only living contact with Denise, her departed daughter.  My mission today is to see if I can get Maeve to visit ASAP and also that ‘Top Dude’ nephew of mine.   Maureen often talks about the lovely time she had showing Tim around the place – she is his ‘Favourite Lady’ but he says that to all the girls!  Family contact is rather sparse at the moment but that seems to be par for the course when dementia is an unwelcome visitor.

I am hoping the progress we are making is a move in the direction of being taken out of Special Measures.  However I’m long enough in the tooth to know that one swallow doesn’t make a summer:  with vascular dementia you can only ever have a ‘Working Position’.

The ‘Newbie Carer’ was excellent yesterday and I haven’t heard Maureen laugh so much for ages.  Dianne and Maureen sat on a garden bench for a long time in fits of laughter; goodness knows what they were up to.  Dianne is back again at 10.30 am and I owe Gary, our replacement social worker, sincere thanks for sending such a cool carer our way.  If we can retain her on a regular basis we that will put a new perspective on weekends, as I will be able to pop out to have some further welcome time to myself.

Great News: the front door bell has just rang and Maureen is at the door.  She tells me she has just been out for a short walk around the block: Amazing Maureen!  She’s got the bug now and we are just off down to the beach…….

I hope to be able to revert to one post a day from now on.

Edit: The beach walk didn’t happen as Maureen decided she had already had a lot of exercise this morning.  Mike my neighbour tells me she has been walking up neighbours’ drives on her travels.  At 8 am she is asleep in bed: that photograph on the door seems to be helping!

 

Dementia: Seeking Wisdom

 

Last night I had the best sleep for months and it wasn’t a coincidence.  A number of things fell into place that can only help us on the next stage of this hazardous journey.  Some honest exchanges took place yesterday.  It was unfortunate that a rather important one, sparked by an overheard phone call, was only partially explored.  Several people have now encouraged me to reflect on how my approach to being a Care Partner had perhaps drifted in an unhelpful direction: hence the picture above.

Maureen has moderate to severe dementia and there is little I can do about the progression of the condition.  Had it been diagnosed 10 years ago when earlier vascular damage was taking place things might have been different.  That is now water under the bridge and I hope that those who manage to get an early diagnosis are fortunate enough to benefit from the work of Professor Bredesen.

Thank you Mel, my Admiral Nurse, for playing the devils advocate.  In future I will refrain from occasionally cancel carer sits: Maureen needs the routine and I need time to myself 

Once again I thank my lucky stars that I’m in North East Lincs where the mantra is ‘to look after your carers’.  The forthcoming Best Interest Meeting will be an opportunity to plan a way forward that takes into consideration all the variables.  How fortunate we decided to be beside the seaside here in Cleethorpes.

Sincere thanks to Kelsang Dorde who posted the picture above on his Facebook page and started this process of reflection..  I hope to be in his company again very soon and benefit from his morning meditation sessions.

Apologies for three posts already this morning – have to dash now to induct a new carer who will be here shortly!

Dementia: Top Tips For Living Well

“Our Top Tips” to Living Well with Dementia – Scottish Dementia Working Group @SDWG

During the summer of 2015 the Scottish Dementia Working Group (SDWG) and Lynsey Robertson-Flannigan the Alzheimer Scotland Occupational Therapy intern formed a ‘Top Tips’ subgroup. The aim of this group was to co-produce a peer to peer resource of tips and strategies for people living with dementia.

The SDWG members have over the years collected strategies and tips which they have found useful in helping them to live well and independently with dementia. Their desire was to share this knowledge, enabling others to maximise their quality of life by being ‘all they can be’ (Dementia Skilled Improving Practice 2016).

Image of the group hard at work sharing their ideas.

 

The outcome of the group was to develop a resource of all their ideas. After a few brain storming sessions, a booklet of “Top Tips” was developed and the tips were themed into these areas:

At Home: Kitchen – Moving about your home safely

Out and About:  Using buses, trains and taxis – Car parks – Keys –  Staying safe and asking for help

Medication: Taking medication – Being away from home

In this week’s blog we are delighted to share with you a preview of the “At Home” section.

Kitchen our top tips to living independently

  • A note on the cooker could prevent you from becoming distracted while cooking, for example: “Do not answer the door or phone when you are cooking.”
  • Blackboard stickers or signs on kitchen cabinets can be a reminder of what is inside.
  • A timer can remind you that food needs to be checked or that it is ready to eat. A portable timer can be carried to different rooms of the house.
  • Using blackboard stickers or signs on kitchen cabinets can be a reminder of what is inside.

pic 2

  • Timers can be used to remind you to turn off appliances, such as the oven or iron. This can prevent fire hazards.
  • Having transparent kitchen appliances could make it easy to see when the kettle is boiling or if the toast is ready.

Reminders for information, dates and appointments can be used around the home in a variety of ways:

  • Laminated reminders
  • Labels
  • Whiteboards
  • Notice boards
  • Magnetic boards
  • Recorded messages
  • Labels on drawers can be a reminder of what is inside.
  • Post-it notes
  • Having a checklist at the front door. For example:

Have you turned the gas off?

Have you turned off electrical appliances?

Do you have your car keys / purse / wallet?

Is the back door locked?

Are the windows shut?

Remember to lock front door?

  • Calendars with large boxes to record appointments or diaries which have clearly separated days.

Printed reminders should be interesting to look at so that they catch your attention. Using coloured card or photographs can help.

Photo from dementia circles ideas

Moving Around Your Home Safely

  • Some local authorities can provide useful services to promote safety in the home. These can include a wide range of community alarms or alarms which make a sound when you leave your house.
  • Trip hazards can be reduced by painting the last step in a contrasting colour. This can make it clearer where the stairs end.

pic 6

Being involved in the development of ‘Our Top Tips to Living Well with Dementia’ has been a real pleasure. We have almost completed the booklet and hope to have it available in the next three to four months.   We hope that the tips included within this leaflet will be of use to people with dementia now and for many years to come.

The Scottish Dementia Working Group are aware that these are the strategies that they have found to be of benefit although they may not work for everyone.

It would be great to hear from you on other effective “top tips” you use already? or have you seen any of these ‘Top Tips’ used and were they of benefit? and would you include any further sections?

pic 7

We need to say a thank you to all the members of the SDWG for their ideas and suggestions as well as to Lynsey Robertson-Flannigan, Susan Burn, Fiona Gordon and Rachael McMurchy for their support and advice.

Footnote: I’m beginning to think that my cyber friend Kate Swaffer is telepathic as she has posted the above on Linkedin and it is the very framework I need to help move out of self-imposed Special Measures.  That’s another hug I owe you Kate!

Dementia: Placed In Special Measures

After an incident this morning I have just placed this house in Special Measures.  Maureen woke up this morning and felt she was locked in and has been wandering around the house terrified whilst I have been upstairs unaware of her concerns. I need to review my approach to Maureen’s care and work out how to tread the tightrope of keeping her safe whilst attempting to preserve her independence.

I’m going to adapt the CQC Framework to try to get my act together.

It’s fortunate that I will have 6 months to get my act together!  In the mean time I’ll continue to post details of our daily lives whilst I try to seek improvement as I strive to get out of Special Measures.

 

 

Dementia: Shocking Short-term Memory

I have just had a rude awakening concerning Maureen’s short-term memory.  Ian her son has just left after being here from 11.30 am and she has just asked me who he was. She says she has never met him before and thinks his name is William.  I suppose I shouldn’t be shocked by this as very early this morning she told me in no uncertain terms that ‘wives slept with their husbands and I wasn’t hers’.

Sue our social worker is off sick and Gary her replacement is in the process of organising the Best Interest Meeting.  I have now asked an Advocate to represent me at the meeting and made it clear to all parties what I think is the best way forward.  I’m hoping that Day Care at Royal Court along with periods of respite will relieve the pressure on me as her Care Partner.  The irony in all of this is that Tracey an earlier social worker asked me to explore Royal Court for Day Care quite some time ago and I never darkened their door!

Dementia: 3 Ways to Redirect

More excellent advice from the Alzheimer’s Reading Room:

‘3 Ways to Redirect a Dementia Patient and Embrace Reality

 Some caregivers find it difficult to redirect Alzheimer’s patients – why not try these simple methods?
Caregivers find it difficult to redirect Alzheimer's patients, why not try these methods?

By Bob DeMarco
Alzheimer’s Reading Room

Learning how to redirect an Alzheimer’s patient is often difficult. The concept itself is difficult to grasp.

Learning how to embrace the reality of a dementia patient is also difficult.

Learning how to redirect a person living with dementia and how to embrace reality are essential components of effective caregiving.

Learning how to do this takes patience and a little practice.

When ever possible you should include these two nonverbal communication techniques before redirecting.

First, if close by take the person living with Alzheimer’s Hand. Second, make sure you have their attention and smile. Also, try to respond in a steady voice.

1. I’m hungry, I’m starving

My mother would utter those words over and over every day. In the beginning I would inform her that she had just eaten (often true), that she could not possibly be hungry, or she had already eaten 3 times that day.

What I failed to realize in the beginning was my mother: could not remember she had just eaten, could not remember what she had eaten that day, and that, in fact if she said she was hungry – she was hungry.

I failed over and over in the beginning to embrace my mother’s reality. If she said she was hungry – even right after she had eaten – then she was hungry. Who was I to determine how she was feeling? Aren’t we all entitled to our own feeling, or for that matter beliefs.

Whenever I chastised my mom and told her she couldn’t be hungry it usually ended in a horrible episode. My mom would go into her room and refuse to come out. I would be left alone feeling bad, and having a bad day.

Then one day I discovered the solution by accident. Dotty said, “I’m hungry, I’m starving.” I looked at her smiled and said, “okay, can you give me ten minutes to finish what I am doing and we will eat”. She smile back and said, ‘okay”. That was that.

She didn’t ask again and seem satisfied with my answer. I had embraced her reality, and that was what she really needed.

You might be able to use this form of redirection in any number of situation. Smile and embrace the reality. You might be able to get away with one word – okay.

How to Get Answers To Your Questions About Alzheimer’s and Dementia

2. The distant and no longer past as reality.

My mother did this one over an over with my sister but never with me – go figure?

My mother would tell my sister that she wanted to get Volkswagen (VW) fixed so she could start driving it.

The VW in question had not been around for 30 years. It no longer existed. On top of that, my mother was no longer driving and had not driven in many years.

My sister would smile and respond in her normal voice, “okay, let’s do it tomorrow”. Close enough to the 3 little words rule.

My mother would accept this with out question.

In this example my sister embraced my mother’s reality. That the VW actually existed, and she offered a solution. However, my sister would not address the issue of “driving”. She knew my mother was no longer driving, and, had learned it rarely works when you correct a person living with dementia.

In this example, a bit more complex there are 2 issue. A car that no longer existed and driving. My sister embraced the key issue, and resisted the urge to inform my mother she was no longer driving – she realized it really didn’t matter.

3. Use the Hook

Sometime my mother would do or say something that was not really conducive to redirection. In these cases I learned to use the “hook”.

I might say out of the clear blue sky, mom, why don’t we have some potato chips? This worked every time. My mother loved potato chips.

I had other hooks. For example, would you like some ice cream? Answer every time, yes.

And sometimes I would just change it up completely. Mom, let’s go to McDonald’s and get some french fries. I used examples like this one when my mother seemed to be getting – very negative. I wanted to get her of the house and into some bright light – or just plain out of the house for a change of mood and environment.

I learned over time how to listen to my mom. Once I made it to Alzheimer’s World I learned how to accept that what she was saying was true – it was true to her. I no longer had an incessant need to correct her.

It was no longer all about me, it was about her. Whatever was happening in her world was in fact reality. So even though it took me a long time to embrace her reality, once I did I felt a lot better. Calmer and happier.

Over time I learned how to keep it simple. It seems “simple” really works well in Alzheimer’s World.

Touch, Smile, be Patient, don’t be Judgmental and somehow, someway, life starts improving.

As I write and think about this I continue to be amazed that if you try real hard – it doesn’t work well. If you keep it simple and easy – it does work well.

It now seems to me that it should be easy to learn how to redirect, and how to embrace reality – it isn’t. But once you do, you can then look in the mirror and laugh at yourself. That is exactly what I did’.

I am about to Email this post to Maureen’s eldest son as he will be on his way to visit us soon.  I hope he finds the above helpful because her presentation has changed so much since he last saw her