I  am requesting an urgent review of our Support Plan this morning after Maureen chose to run away yesterday, rather than have an Away Day.  She slipped off from a carer early afternoon and a couple of hours later declined a short car trip preferring to walk around the local area almost to the point of exhaustion.  Her behaviour during that time exceeded anything I had seen before: vitriol towards me was par for the course but trying to get into neighbour’s cars and homes were new territory.  Thankfully, even those we had never met before grasped that Maureen was unwell and reacted to her compassionately rather than summoning the Police.

It may have been a blessing that the Emergency Services were unable to respond to my request for assistance; their presence could have taken Maureen down an unhelpful path.  If she hadn’t turned round from her mission to walk towards Cleethorpes an ambulance crew were scheduled to intervene.  That may have led to a lengthy period of assessment that would merely have confirmed that her presentation had changed or her condition had progressed.

The night has been far from peaceful with Maureen waking around 2 am convinced that ‘they are trying to put her into a black box.’  She fails to understand ‘why they are trying to get her as she has no money.’

As soon as lines open I will seek a physical review of Maureen’s condition with her GP.  It is possible that infection is creating havoc with her presentation.  I’m also concerned that she appears to be losing weight, as yesterday’s carer was keen to point out.

I’m hoping that our Key Worker will be able to put in some additional support to see if we can help Maureen settle down.  Her Care Coordinator from the Memory Service will be here at 3.30 pm ‘to close the case and refer her back to her G P.’  I think a review of that decision would be appropriate the way things are going!

I just couldn’t resist this after yesterday:

The events of yesterday have left me wondering if I really had a Respite Break.  It was past midnight before we were able to get to bed after a horrendous day with Maureen in agony for much of the evening.  Rapid Response came to our rescue at 11 am and gave Maureen treatment that eventually brought an end to chronic constipation.  I have never witnessed or heard anyone in such pain until things started to move.

I’m hoping that our Care Agency has been able to respond to my request to recommence support a day earlier than planned.  Someone needs to be with Maureen as I begin the task of clearing up from yesterday.  The washing machine is already on and is in for a long shift today.

All the good work I did on my tired body last week has almost been undone with aches and pains widespread once again, the saving grace is Maureen is fast asleep as I type. This is another one of those occasions when there is no gain without pain.  As I begin what is likely to be another long day questions remain about how we handle future Respite Breaks.

We would have been in a bigger mess last night without the excellent support we received via Single Point of Access – my hotline to them gained us prompt access to hospital and community-based support.   Throughout our ordeal, we were always treated with dignity and respect by staff whose dementia awareness was first class.  Once again I’m extremely grateful for the quality of services that are available to us 24/7 to us in North East Lincolnshire.

On thing, I almost forgot – how fortunate the Second Great Escape was successful!

I often struggle with Maureen’s presentation during the late evening.  One possible explanation for her behaviour is ‘Sundowning’ and Tracey Maxfield directed me to this article yesterday after an exchange on Linkedin:  

This article is a publication of TogetherinThis.com and has been republished with their permission.”

Editor’s Note: The term “Sundowning” is sometimes used as a negative label which can be damaging to the care provided, and results in unjust stereotyping. This contributes to approaches to care that focus on weakness rather than strength, illness rather than wellness, and victims rather than whole persons. It’s important, as the author states, to look at any behaviors as a form of communication. This will help you discover, and hopefully, address the trigger that is negatively affecting your loved one. Learn More.

Contributing Writer:  Christy Turner, founder of Dementia Sherpa

Sundowning can be one of the scariest things you encounter as a dementia care partner. Everything seems to be going well, and then, seemingly out of the blue, your person goes into full meltdown mode.

What happened?

Depending on the time of day, it’s probably sundowning.

Sundowning refers to behaviors that occur late in the day; hence, the name. This can include any type of behavior. The common element is how difficult it is to “reach” your person, as they may seem inconsolable.

Keeping in mind that “behaviors” is just another word for “communication” can help make it a less scary experience.

Remember that for people living with dementia, it’s easier to understand our nonverbal cues and body language than our words, so do your best to stay calm throughout the experience.

Here’s what else to do:

1. Maintain visual supervision. Depending on the severity of the situation, you probably shouldn’t get inside their personal bubble. Safety is the first priority, so just do what you need to do to maintain that, without being intrusive.

2. Once sundowning has started, it’s very difficult to stop. If caught early enough, you can try distraction and redirection.

Understand that in order to fully stop it, you’ll need to be completely engaged with your person for the next few hours.

Using the television usually won’t work.

3. Turn on all the lights and cut off other stimulation. This decreases confusion both about the time of day, as well as helps with visual hallucinations and visual-spatial impairments. Cutting off overstimulation (TV, radio, people talking) is one of the smartest, most effective things you can do.

4. Match your tone and pitch to your person’s. This isn’t to say yell back, but if they’re throwing out a heavy-metal kind of energy, you bringing a Lawrence Welk vibe is just going to irritate.

5. Whip out the lavender or geranium essential oils. Either of these in a diffuser can be super useful in promoting calm. Also consider spraying some on a shirt collar.

6. Burn off the energy. Any type of physical activity will be helpful in using up the sundowning energy.

7. If it’s safe, offer physical affection. Hugs make everyone feel better, but if that’s not possible offer your hand (palm up, a sign of submission) to hold.

8. Synchronize your breathing. If it’s safe to get close enough, synchronize your breathing. Once synced, work toward deep breaths and long exhales.

9. Please don’t be a jerk! This only happens unintentionally, but it’s still not cool. Think of a time when you were angrier and more frustrated than you’ve ever been in your life.

Now, think of your parent or partner telling you to “just calm down” or “relax” or assuring you that “you’re fine” and “there’s no need to be so upset.”

Helpful? Nope! You probably felt your blood pressure go up even more, right? Same goes for people living with dementia. We all like to be taken seriously and have our feelings validated.

10. Be a hero. Remember, as scary as this is for you, it’s even more terrifying for a person living with dementia.

They don’t know why this is happening, they can’t verbally express their thoughts and feelings, and they’ve lost the ability to self-soothe.

You make it okay for them by stepping into their reality and offering reassurance: “I’m here for you. I love you. I’m going to keep you safe.

I’m not going to let anything bad happen to you. I will always protect you.”

About the Author: Christy Turner is the founder of Dementia Sherpa. She’s helped over 1100 through the rough terrain that is dementia.you can visit her site and learn more about her and her great resources at DementiaSherpa.com.

Footnote:  I’m meeting with Maureen’s Key Worker in three hours.  He planned to visit her yesterday afternoon in Ashgrove Care Home and I’m really looking forward to hearing how she is doing.