‘Repeating Sentences’ – A Simple Solution

Many people with dementia often repeat sentences within minutes of saying something, and it’s tiring and frustrating for the family member or carer. Several years ago I did a presentation for 35 carers and asked them what their No.1 biggest frustration was caring for people with dementia?

Answer: “Residents repeating themselves”

I learnt early in our story that a person with dementia has a very, very short term memory. This didn’t mean a lot to me at the time until I worked out Dad was retaining information for only about 2-3 minutes before forgetting.

People would often ask me how do you put up with answering the same question over and over?

The best way I could think of to explain to others was to imagine the person with dementia has an etcha sketch for a brain. They use it for a few minutes, then it automatically erases the information every 3 minutes to a clean slate.

So how did this help??….I would expect Dad to forget what I had just said, and this totally helped me deal with it. I could then train myself to use short and simple sentences that saved my own voice and frustrations.

If you expect the repeated sentences to come, you don’t waste time and energy trying to reason or work out why the person is not understanding you.

Hope this is helpful for both family members and carers….

When You No Longer Have to Care… (But still want to)

It has been well over a month since Dad passed away and I had no idea how I would feel about my dementia advocacy. I have been so busy I have had very little time to grieve but I am pleased to say that I am still as passionate as ever. It is a strange feeling breaking daily routines and not having to care for someone.

I walked back into the nursing home yesterday to see how I felt about everything. I wanted to know if the residents remembered me? Straight away residents came up to me with their quirky ways and interacted. One lady came over and held my hand, others had deteriorated, and some had died.

It was nice to watch several residents’ faces ‘light up’ when they saw me, which tells me that they remember me as someone familiar. I bantered with the residents about their meals and had another “conversation about nothing”…which is what we do with dementia:-)

Dad’s former room is now occupied by another man from my Men’s Group and amazingly the room was setup almost identical to the way we had it for Dad. The man is tall, kind and gentle and has the same vibe as Dad, so I am really happy.

I miss the residents and I miss the staff and watch them rushing around during meal time…..they look stressed. One staff member said to me that many family members talk about coming back to volunteer in the nursing home after their loved one dies, but rarely do and was pleased to see me back.

So what’s next for me in 2017? Not sure….but the radio interview was a big challenge to overcome, and I recently helped with the design of a dementia friendly park in Mt Barker which was interesting, and I am now up for whatever comes next. Maybe our ‘DD’ members could give me some suggestions as to what I can do next to get ‘dementia on the agenda’ and help families and carers?

 

Another Way To Look At A Feared Dementia Milestone

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The significant event that most family members fear is when the person with dementia no longer remembers your name or who you are. Often by this stage the person with dementia has already experienced the following over many years:

• increased forgetfulness
• difficulty concentrating
• decreased work performance
• difficulties managing finances
• difficulty travelling alone to new places
• have trouble completing complex tasks
• may be in denial about their symptoms
• they may withdraw from family and friends
• socialization becomes difficult
• they need assistance to complete their daily activities
(eg bathing, dressing, preparing meals)
• significant memory loss (eg forget their address etc)

Imagine what it’s like to struggle with everything above, every single day & worry about why you are doing it, and have to experience the impact it has on your friends & family. People who used to come up to you and chat, now sidestep you because they don’t understand dementia and all that comes with it. The feeling of loneliness and fear is often felt years before the person forgets your name.

Below are some positive strategies that I personally found helpful as a family member:

  1. Acknowledge the dementia and embrace it.
  2. Every time I feel sorry for myself, I think about what it has been like for the person with dementia.
  3. Find new ways to keep the emotional connection (adapt to their decline).
  4. Spend time together (this will ease the fears)
  5. Simplify everything
  6. Set the person up for success by not asking questions all the time (eg what’s my name Dad?)
  7. Learn new ways to communicate (use body language).
  8. Have Fun…..Enjoy many Memorable Moments (no matter how small they might be)
  9. Keep Living Life…

A Fabulous Memento

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I just wanted to say ‘thank you’ to Jane Pickering & Briony Petch from Eldercare for the recent unexpected gift.

I did a small speech on behalf of the families at ‘The Lodge’ when Eldercare celebrated the opening of their latest re-development. It was an emotional time for me ( due to Dad passing away) and this gift is very special to me.

The lovely lady in the photo is Beryl Fenton who did a great speech on behalf of the residents. We are cutting the ribbon together in the photo.

Keeping The Connection

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I thought about what makes dementia care rewarding for me and I realized it is ‘keeping the connection’ with that person for as long as possible. The challenge with dementia is that the person may be in the later stages and not be able to tell you their passion. They also are a moving target and as the person declines we often accept that they can no longer do a certain skill anymore. eg a lady may no longer be able to knit.

In my mind, it is the role of the carer to adapt to the person with dementia’s current abilities and not just accept that a skill is gone, but be determined to find a way to make that passion or skill continue to have meaning to the resident. With the knitting example if the person can no longer knit, they may feel like a failure and lose confidence in themselves, and this may lead to depression. What sort of things could we do to make that knitting skill relevant to her???

I thought long and hard about this and I probably would obtain a whole bag of different coloured balls of wool and offer them to the resident to try and sort into colours. It doesn’t matter whether she is correct – it is whether the person is engaged in doing so that matters. Does she like holding the wool? Is she feeling the texture of the wool? Is she comforted by having wool on her lap? Can she still hold the knitting needles? I would bring in a knitted baby jacket and watch her reaction. Does she light up? Does it spark a conversation or feeling within her?

Maybe the resident is further along the journey and cannot respond in any way, so we have to become more creative. We could talk with the resident about knitting and what experiences we may have had with it. It may be a one sided conversation, but it is her eyes that are the gateway to what she is thinking. We could sit next to her and place the wool on her forearm and just stroke her skin with it to see if she has feeling. Does the warmth make her feel comforted? What happens when you place a knitted lap rug over her? Does she draw it towards herself?

I know nothing about knitting but it is a great opportunity for me to learn a new skill. If the person with dementia was still able to knit I would get her to teach me. Asking questions about what type of items she has knitted for her family members can spark an engaging conversation about a certain period in her life. Unlocking these passions again is what caring is about for me. The day to day tasks such as meals and tv and activities is mundane, but to tailor an activity around a passion of a resident and make them the ‘star/focal point’ for that day can make them feel really special and empower them for that moment.

I would like to see caring performed at a ‘deeper level’ in the future and if I was a team leader or supervisor I would like to actually ask the carers some questions to indicate their interactions with the resident eg. Tell me what what you learnt about Mrs Johnston this week? ….Was there anything you did this week with Mrs Johnston that you felt engaged her? Have you noticed any declines in her abilities?…How do you think we can deal with this?…Do you have any ideas with how we can bring out the best in this resident?

Our carers and nurses are so used to doing ‘tasks’ that the person with dementia’s feelings and self esteem is the element of caring that is being sacrificed when the resources are stretched. Most carers do what they do because they actually care about people. If you do not empower the carers to spend time making a difference to each person, they are actually bored as well and just doing tasks because they have to. If we lose this ‘person orientated’ focus, the residents will die of boredom. The light within them will go out and this will be really sad.

Something to think about……

Imagine You Have Dementia And This Happens………

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Your life is regimented, predictable, and probably pretty simple (and possibly boring). You are now living in a nursing home amongst the familiar faces of other much older residents, and you feel you don’t fit in. Then without warning you feel strange and show signs of agitation, depression, or some new ailment. The doctor is called and a new medication is administered to counter the new symptom. You were meant to get better, but you react badly to the medication and have exaggerated behaviours and become agitated  and start hitting out. You did not ask for a new tablet to try, you were made to take it and it makes you feel strange and behave in a different manner. Other residents are confused and startled by your unusual behaviour, they are rattled and start to yell at you. All of a sudden the whole place is in chaos …all because of you.

As a result an ambulance turns up with a person in a green jumpsuit (but you don’t see the ambulance). People are constantly talking at you, but it sounds like ‘white noise’ and they want you to be strapped into a bed like contraption. You refuse as you don’t know what is going on. People are scattering everywhere, fire doors are being locked and you are on one side of the clear doors and every other resident is on the other side. You start pulling at the doors trying to get to the familiar faces you can see through the window. You feel like a prisoner being put in isolation. You are now frightened and angry and have no idea what is going on – every move you make now has a consequence. The more you shake the doors the more people are yelling at you to calm down…you think to yourself “what is happening to me, I haven’t done anything wrong?”.

People are grabbing at you trying to settle you down, they tell you to go everywhere you don’t want to. The people send you to your bedroom. You think to yourself ? “I am not a child”…. but you are being constantly told to go. People stand in your way and block your exit, and you feel trapped. You are refusing to comply and along comes two more people in green suits. You are now cornered in your room and surrounded by 5 people telling you to calm down. Your mind is racing “How do I get out?”.

The green suits want to give you a needle but it is too dangerous. They opt for a nasal spray. Being blasted with spray up your nose is unpleasant, you need to be still and calm. You are told to lay down. You don’t want to, you sense something is bad about to happen. “HISSSSS” the spray is set off. You react really badly like a caged lion. Your mind is scrambled and you think again…. “Why are these people trying to hurt me?”. You are now in survival mode.

The green suit tries again to give you another spray, you hit her away. A heavy net blanket is thrown over you and you are pinned. They spray again, you struggle and are restrained. You thrash and bite as your arms and legs are pinned. You are placed in a strange tube like space and you are now moving. The ambulance races to the hospital and you start to calm down and are exhausted. You arrive at a very busy Emergency Department but you don’t understand this, there are stretcher beds with people on them all lined up. There are up to 10 green suits all walking around. Big muscle-bound men in navy uniforms are lurking nearby, you think to yourself “where am I?…What is going to happen next?..why are there so many people here?”. You are confused and lost, you are also angry and frustrated. The green suits are replaced by people in white outfits. Here comes another needle. You don’t want it…are they trying to drug you? ….Who are these people? You react by swiping at the person in white. You are then surrounded by 6 huge men. They are holding every limb down to the bed. An hour later you are still in the same position. More needles, More holding down, more fear. You are then given a new space to live in by yourself with beeping noises and constant badgering. The big white lights are turned on early each morning to annoy you. As you open your eyes the people in white put more tablets down your throat before breakfast. You are now in a very regimented prison like space, everyone is now the enemy. You think to yourself “Where am I, Who are these people? When will this nightmare end?…. All this turmoil because another damn symptom arrived…….This is extreme dementia.

NB – The above story has been written to help us as carers ,nurses and family members possibly understand how a person with dementia feels. When you lose insight as to how ambulances and hospitals work they become very scary places indeed. We need to show empathy as much as we can and limit the distress to the person with dementia as much as possible.

Dementia on the Radio – ABC 891 with Ali Clarke

Ali Clarke & Brett Partington – ABC 891 Studio

Radio certainly gets the heart pumping and adrenaline going. You go from 0-100 in a matter of seconds.

The studio is huge and there is a massive control booth.

Ali was absolutely lovely and steered me thru well. I certainly have massive respect for people on radio. It is not for the faint hearted.

All that aside – Even though I was really nervous I hopefully was able to communicate some key messages through and shed some light on dementia.

I ticked off everything I wanted to achieve:

1. Talk about the fabulous Dementia Downunder members.

2. Meet Ali , get a pic with her and survive the interview.

3. Explain why dementia is different and talk about the role of families.

4. Give some positives amongst a lot of doom and gloom.

Time for a really strong coffee ahhhhhhh….Another really big challenge overcome.

The podcast can be listened to by clicking the following link:

http://www.abc.net.au/radio/adelaide/programs/mornings/brett-partington-and-dementia-down-under/8338674

 

 

 

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