Many lives

As Dee believes we have many lives and we are often in different lifetimes with the same people but in different relationships she always says when someone dies “Better to die than to suffer!”
I agree with this wholeheartedly, however, it can be a very insensitive thing to say to someone who has just lost someone or is grieving.
I remember my friends dog dying, a dog that I spent many many days with as I worked for my friend and her dog would lay under my desk all day.  Mum was cleaning her teeth in the bathroom when I walked in in tears & told her that the dog had died.  She turned to me & said “Better to die than to suffer!” and turned back to the task in hand.  This was quite upsetting as mum used to be really sympathetic if you were upset, she still is if it’s something other than death lol

Laughter etc

One of mum’s favourite catch phrases is “Laughter is the best Medicine!” (she actually believes that she invented this one) or “If it makes you smile/laugh, it’s a winner!”

About going to her day centre & Singing For The Brain.  Mum doesn’t want to go (I think due to anxiety of not remembering what it looks like etc) but I remind her that she comes out saying “I feel 10 years younger & 6 foot tall!”

Repetition

One of the most frustrating symptoms of dementia for a carer, family member or friend to deal with is the repetition.  Mum has always been known for repeating stories, for as long as I can remember, (maybe it was actually early onset) but it’s not just the same stories over and over again.
Each morning I get asked 3 times within half an hour “Did you sleep well?”.  It makes no difference whether I repeat with the same answer or something completely different.
I’m asked what’s happening for the day & once she’s told, she’ll still keep asking roughly every hour.  Either the same question or “Where did you say we’re going?”  “Did you say our appointment’s at 2pm?” (For some reason most ‘times’ get moved by half an hour in her memory.  I’m asked every morning what my coffee is, what’s in my breakfast bowl & where is her memory board when I prompt her to go to it.
At the moment I’m asked each day when Easter is?  I tell her it was last weekend & she still has an Easter Egg to eat.  This is happy lost memory as she gets excited about her chocolate egg all over again!  However, questions like these are gutting because you can see in her eyes that she’s upset knowing that she must have known when it WAS Easter & so how does she now not know when it is?
When arriving home from somewhere I’m usually asked a few times if I had a nice time.  Occasionally if I keep the response the same, she will say “Oh yes you told me, sorry”.  Then she looks really upset because she knows it must be annoying.  I hope I’m improving with my facial expressions & tone of voice in not letting her know, at least too often, that I’m irritated or frustrated.  It’s so unfair that you can’t help it annoying you but she can’t help it!
The stories that mum shares are starting to change as she forgets details & gap fills with other things.  I used to correct her but soon understood that this only causes distress as in her head the memory is correct.  I’m desperately trying at the moment to get mum to fill in a Life Story Book to hold on to some of her memories.  I want her to get the stories in it before they change anymore.  I don’t want to write them myself because I feel that one day in the future she may be reading them & if they’re not in her own hand writing then she may be disbelieving of them being true.
I try to remind myself amongst the fairly constant repetitive questions & the constant humming, (I’ve not told you that mum hums constantly, literally-even while she’s eating-random tunes, normally just 2 bars and won’t change for about 6 months) that one day she won’t be able to repeat her stories, one day she won’t be able to ask questions, hum or make a any contribution to a conversation.  This thought is absolutely devastating as Dee has ALWAYS loved to talk!  She still does but her response to what you say is now often some random past memory that has nothing at all to do with the conversation you’re having.
The other thing that she still has, which can be the first thing for someone with Alzheimer’s Disease to lose, is her sense of humour.  Her jokes may often be inappropriate or simply make no sense at all, but she still mostly recognises a joke when you make one.  She also, of course, has a great laugh with me over her ‘Deeisms’.  I ask her permission to post them on Facebook to spread the laughter & she knows about my Blog, though I’m not sure she has the capacity any longer to understand what this means.  She does trust me implicitly though, thank god, so I don’t concern myself about this. She always says “Laughter is the best medicine!”
I hope more than anything/everything else, that her sense of humour is the last thing to go.
Clothes  that I am loathed to wear because of the writing they have on them that invoke the same questions or comments no matter how many times they are seen.
Adverts on TV that invoke the same thoughts, comments or questions every single day.  I find myself cringing because I know exactly what is about to be said & my response to it is neither recognised nor taken on board to alleviate any stressful emotions that may have incurred.
Repeats of TV shows (Yes Judge Judy mostly) that you know will bring certain comments, judgements & noises no matter how many times they are seen.  It IS fascinating that these things remain identical regardless of how many times they are repeated.

 

Making life easier for the dementia sufferer

Use names a lot, especially when in people’s presence.

Put fun signs on the doors of the house to identify rooms.

Put photos on cupboards of the contents inside.

Keep their routines structured.

Set certain places for things so they are easier to find.

Label items to identify them easily.

Allow them the time the need, don’t rush them & cause stress.

They are not able to change the way that they communicate, you are!  Ask yourself “What can I do in order to communicate better?”

Use phrases they understand (are used to using & hearing).

Initiating an action can be hard for them, you may need to start them off.

Remember they may not understand what you mean by “turn off the light switch” or to “Be careful not to slip.”

The most common object recognition to go first is utensils.  Start the action so they can continue.

Don’t do things for them they can do for themselves, ask yourself “Is this going to create a drama”?  If not then let them do it.

It’s hard for people living with Dementia to make decisions so try to only offer 2 choices.

Use all senses.  If verbal communication is hard, tap into other senses.

Remember when looking at symptoms that it is an illness.  Ask yourself “What can I do differently?”  Why are they doing certain things or behaving in certain ways.  Are they anxious, needing comfort etc.

Always ask yourself in all areas of caring for someone living with dementia “Why do I need control over that?”  “Does it matter?”  Be reflective.

Ask yourself as a carer, What do I need right now to be emotionally happy?  Try not to use negative coping strategies such as Avoidance, Emotion & Problem focused strategies.

Remember they still have a choice.  You have to ask their permission, give them the choice of whether you help them or not.

Cognitive Symptoms of Dementia

  • Agnosia:  The failure to recognise a familiar object.  e.g.: Faces
  • Aphasia:  The loss of ability to express or understand language or problems in communication
  • Expressive Language:  Ability to be understood
  • Receptive Language:  Ability to understand others.  White noise on & off.
  • Apraxia:  Difficulty carrying out motor functions – buttons, handwriting, utensils
  • Compensation:  Filling in gaps in stories is good because it shows a level of awareness.
  • Insight:  The ability to monitor what you’re doing & if it’s appropriate
  • Disorientation:  Where one is, who one is, and/or date & time of day
  • Distractibility:  Create the best environment.  Calm & happy to focus on what you say
  • Impulse Control:  Lost ability to relax & do it later.  Let them do it!
  • Initiation:  Initiation in actions get lost.  You may need to start an action
  • Perseveration:  The tendency to ‘get stuck’ to relieve stress or anxiety
  • Choosing:  Show them only 2 choices.  Decisions can be very challenging & they often only remember the last thing you said
  • Judgement:  It doesn’t matter what they wear but it matters that they are safe
  • Memory:  Stimulate their emotional memory & give constant reassurance
  • Registration:  Keep simple.  An activity that requires explanation will not work for someone with this symptom
  • Recall:  Unpredictable memory recall.  A few minutes ago, may be too long ago
  • Planning:  Break the steps down for them.  Let them continue to do the steps they can do & only do the steps they can’t
  • Sequencing:  Try to keep things in order for them.  How they dress, make a cup of tea or the order in which they wash
  • Postponing:  Telling them “in a minute” is likely to cause stress.  If they need the toilet, it’s likely that they can’t wait
  • Spatial Awareness:  The loss of ability to judge the space around you.  Falls become common as they misjudge where things like furniture are
  • Way Finding:  The loss of this ability occurs very early on in AD.  They may avoid going anywhere alone
  • Shorter attention span
  • Muddled thinking
  • Seeing or hearing things that aren’t there
  • Incontinence
  • Expressive & receptive dysphasia
  • Mood swings & personality changes
  • Social disinhibition
  • Becoming anxious or withdrawn
  • Losing capacity for self care REMEMBER
    Dementia affects each person differently, Personality, History, Circumstances & Physical Health all influence the affect.
    Some ‘symptoms’ of Dementia are often not direct results of the damage to the brain, but have social, environmental or physical causes.

A person with dementia not only has no concept of time but they lose the concept of what you are doing.  It doesn’t matter if I’m applying mascara, showering or going to the loo, if the bar of chocolate needs opening & they need your help to do it then it needs doing IMMEDIATELY!

Listen carefully if the request is to go to the toilet, it may mean that it is imminent & five minutes wait will be too long.

Contact Numbers, emails & Website Addresses

Admiral Nursing Direct:  08452579406

Age UK:  0800 169 6565

Alzheimer’s Research UK:  0300 111 5555 or email [email protected]

Alzheimer Scotland:  0808 808 3000

Alzheimer’s Society:  England & Wales:  0300 222 1122

Alzheimer’s Society:  Northern Ireland:  028 9066 4100

Carer Information Line:  0800 849 2349

Carers UK:  020 7378 4999 or www.carersuk.org

Dementia Helpline (24 Hour):   0845 120 4048

Dementia Research Infoline:  0300 111 5 111 or email [email protected] or visit www.joindementiaresearch.nihr.ac.uk
www.alzheimersresearchuk.org

Guideposts Trust:  0845 120 4048

NHS Carers Direct:  0300 123 1053

Promas Caring For People CIC:  Free courses for unpaid carers in Cornwall & Devon:  07775756454 or www.promas.co.uk or [email protected]

The Frontotemporal Dementia Support Group:  07592 540555

The Lewy Body Society:  0808 800 0303