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Monday, 22 May 2017

Frustrations for People with Dementia Related Illnesses



Sometimes I get really frustrated especially when I can’t remember words and have to resort to either using an incorrect word or describing what it is I am trying to say, this results in people with limited understanding of my condition thinking I’m angry or rude.

an elephant never forgets
I’m neither, I’m frustrated, but at myself not anyone else.

MCI can be challenging and, at times, overwhelming. Frustration is a normal and valid emotional response.

Frustration can cause stress and anxiety which may negatively impact your physical health or cause you to be physically or verbally aggressive towards those around you.

I try to limit my frustrations by trying to recognise what is and what isn’t within my power to change.

I find when I am over tied I can be more frustrated and forgetful, in turn this makes me appear slower in my speech and thought process.

I can’t offer answers on how to deal with your frustrations, but I can explain how I try to recognise mine and deal with them.

I’ve tried to recognise the warning signs of when I am becoming frustrated, and relearn ways to calm myself down this can reduce the stress I feel but it isn’t always guaranteed.

My personal warning signs are
·         I smoke more than normal – whereby normally I can go hours before I feel the need to smoke, when frustrated I can smoke every 20minutes or so.
·         My patience is extremely lacking
·         I start to feel hot and bothered which causes headaches for me
·         And I get this urge to smack someone, usually the person nearest me. I have yet to be physically violent but I recognise the potential is there.

When I feel, myself becoming frustrated I try changing my activity to reduce the frustrations.  The first few I have found have very little effect on me but I’m including them as you might that they work for you.

·         Counting from 1-10
·         Breathing more slowly and taking deep breaths
·         Having a quick walk about to gather yourself

·         Ring a friend someone you can chat about normal things with
·         Singing, sing like there is no one watching or listening
·         Listen to music
·         Taking a relaxing bath

Try experimenting, find out what works best for you, some people find meditating or praying works for them.  The best combination I’ve found is listening to music whilst in a warm bath, but sometimes this really isn’t possible.

Saturday, 20 May 2017

Aide memoire: For Mild Cognitive Impairment (MCI)



The term Mild Cognitive Impairment (MCI) emerged in the 1990s in succession to a previous series of diagnostic entities dating back to the 1960’s which has included such terms as Benign Senescent Forgetfulness and Age Associated Memory Impairment.

With the increase of cognitive impairment and dementia, there is increasing interest in the role and scope of memory clinics or memory assessment services in the early assessment, diagnosis and management of all subtypes of dementia.

Memory clinics generally attempt to provide a multidisciplinary approach to the diagnosis and treatment of memory impairment and dementia. However, little consensus exists about the profile or complement of staff that would constitute an ideal memory clinic, and services vary widely in terms of their organisation, remit and functioning.

This article is set to outline some useful “aide memoires” to help those living with MCI as either a sufferer, relative or friends of someone with MCI.  I’ve based this solely on my own experiences and anxieties, but you might find some useful resources or ideas.

It is important to understand the different types of memory storage because a person with severe or progressive memory loss may have one kind of memory loss and not another. For example, people with brain damage on their left side (the left hemisphere holds verbal or word memory) may not be able to remember a shopping list. Or they may not be able to remember the words in a conversation. However, they may be able to use their visual skills (the right hemisphere stores nonverbal memories). For example, they may remember the faces of people they meet at the store.

A person with a great deal of damage on the right side of the brain may not be able to remember and follow directions to a friend's house but may be able to remember conversations.

Document your memories
Even before I had my children I documented my memories by pictures, every year I would collate my photos into an album that I still thumb through even now to remember some of the amazing things I have done and achieved.

In my albums, I document holidays I’ve been on – like my holiday to Rome and my honeymoon to New Mexico.
Being a Gladiator in Rome
Being a Gladiator in Rome
Chipmunk Avenue
New Mexico
Since the Blogger Babies came along I document almost daily their achievements, this year alone I’ve taken over 600 pictures.

I don’t own a sophisticated camera I use my phone which is currently an iPhone 5s which is 8 megapixals on the camera (I’m sure that means something to the more technical out there)

Stay Healthy
Keep up your physical health. Eat a balanced diet. Get enough rest and sleep. Be as active as possible but use common sense and stop before you become worn out. General health is important to good memory function.

Daily reminders and Alarms
Daily I use reminders, I have little check sheets and alarms, that help me through the day.  I have my daily routine written down such as what time to start getting breakfast ready, and alarms which tell me to take my medications.  Establish Routines - Set up a routine time for demanding activities, such as paying monthly bills the same days of the month or filing important papers every Thursday. Organise - Keep items that are alike in the same place. For example, keep all keys on one ring.

Repetitive tasking also known as Same time same
The Same Place - Make a list of items that tend to get lost and decide where to keep them. Once you decide where you are going to put items, keep them in the same place. Keep shoes by the side door or in the bed-room closet. Wear your eyeglasses or keep them on your bureau top. If you can afford a second pair of eyeglasses, keep one pair for home use and the other pair in your purse or jacket for outside activities.
The Same Time - Do a particular activity at the same time each day. For example, awaken and get out of bed the same time each morning. Brush or clean your teeth at the same times each day. Take your medicine at the same time each day. Try to set aside a particular day each week for special tasks, like shopping for food on Thursdays.

Attach Meaning
Usually people remember events that are important and meaningful. It helps to think about why an event, person, or object is important and how important it is to remember. For example, going to visit a friend to celebrate the birth of a first child gives more meaning to the activity when you schedule it and you are more likely to remember to attend.

Labels
Word labels or picture labels help people find things. To find items easily in a closet, label the closet doors with a “coat” label high on the door and the "slippers" label near the bottom of the door.  If you open my cupboards in the kitchen behind every door is the label diagram – it tells me what should be in there and where I usually put it.  I also have a diagram of clothes in the Blogger Babies wardrobe so that I can easily find the right top for the right child.

Music
People with memory problems usually remember events that happened long ago. Family heirlooms, old photos or old songs from their teen years may be comforting to them and should be kept handy. I have many memories linked to Prince and Purple Rain and Yazz and The Only Way is up.  When I hear these I can recall memories from my childhood like they happened yesterday.

Sometimes these mementos remind you of fun times and friends. These memories can calm down a restless or angry person. The person becomes caught up in the happy mood of the memento and stays that way for a while. When an old photo or song creates sadness or anger, distract the person immediately with a new activity- go to a different room, get a drink of juice, or go for a walk (indoors or outdoors)

I also have a shopping list chart and monthly menu planner.
Daily Planner

And when all else fails I ask people to remind me, I’ll argue it didn’t happen like that or that I never said something but usually people reminding me is really useful.

Mental Capacity Act Conference Newsletter



On the 30 March 2017, The Edith Ellen Foundation with Leigh Day Solicitors held The Mental Capacity Act Conference – What’s Right & What’s Wrong.  A decade after the Mental Capacity Act came into force across the United Kingdom it is very much back in the public domain with open discussions across the Professional span, the conference was a review of the Mental Capacity Act and the Deprivation of Liberty Safeguards (DoLS).

In March 2014, a House of Lords Select Committee published a detailed report concluding that the DoLS were “not fit for purpose” and recommended that they be replaced.  DoLS have been criticised since they were introduced for being overly complex and excessively bureaucratic.

Below is The Edith Ellen Foundation Newsletter from the day, please feel free to download and share across your network of colleagues, friends & families