Tag Archives: Vascular Dementia

Dementia: Refusing To Go Into A Care Home

Image result for I WANT TO STAY IN MY HOME DEMENTIA PICTUREMaureen asserted throughout yesterday her right to remain at home.  Despite various attempts to ease her into Ashgrove Care Home, she was adamant that she wanted to stay in her own home.  As she said: ‘I’ve done nothing wrong, I’m not a criminal: you can’t make me go anywhere’.  She also said that if I was struggling to sleep, I was the one who needed help and should move out to allow her own family to look after her.

There is no doubt that Maureen remains a very intelligent woman, able to use logic and rational thought.  Her arguments for staying in her own home were perfectly  understandable considering her experience of Care Homes.  I had to remove her from Ladysmith Road bruised and broken on her birthday.  She escaped from Royal Court and Ashgrove as she hates being locked in anywhere.  Her faltering short-term memory means that she can’t remember the details of her incarceration but the scars are there in her emotional memory.

Maureen was afraid to go into a deep sleep last night for fear of being taken away.  She is now worried if I’m out of sight.  Therefore, we have to be very careful this morning to ensure that our next moves don’t push her over the edge.  Despite being exhausted I intend to help Maureen hold the line on staying in her own home.  There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.

Although I’m exhausted and would love to be enjoying planned respite, I intend to help Maureen hold the line on staying in her own home.  There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.

Gary our social worker will be here this morning.  It is his turn to try to move things forward.   Sue from the Home Treatment Team could get no change out of Maureen yesterday, despite her success a few weeks ago.  After more than half an hour she recommended backing off to avoid further distress. As Sue left, she commented how much Maureen had deteriorated  since her last visit: don’t I know it!

Dementia: What A Relief

We have another new carer on duty today and I think she is going to be just the ticket.  Maureen has just woken from dozing on the sofa and they seem to be hitting it off.  That is great news because Jo is going to be our regular Girl Tuesday if things continue to go well.  What a relief if we are back to three regular carers and also have Evelyn in reserve to cover  in emergencies .

This little number came up at random on YouTube this morning:

Maureen remembered it from yesterday’s early morning session and sang along.  I wonder if I could get it into the songbook at Singing For The Brain so that you know who would feel at home at the Memorial Hall in a couple of weeks time.

Looks like I’d better get downstairs pronto: there is a danger that Jo might talk Maureen to death.  it must be so difficult for carers to get it right on the first few visits – particularly with protective husbands like me around!

Dementia: ‘Help Me: Please’

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As the Baby Alarm came alive at 4.30 am this morning I responded promptly to Maureen’s plea for help.  She had woken earlier at 3 am needing a drink and I had gone upstairs to read a novel: my latest solution to inducing further sleep.

It is disappointing that after two nights of good sleep we are back on familiar territory. Yesterday’s assessment by our social worker has triggered another night of disturbed sleep. Maureen found Gary’s assessment disturbing; worrying that they are going to put her in a Care Home again.

I sat in for the majority of the assessment.  My conclusion is that the process may serve the needs of social services but it inevitably causes distress for the subject.  In my opinion the assessment is relatively pointless: a snapshot infected by inevitable confabulation.

No wonder Maureen is scared this morning: feeling that an authority figure is conspiring to lock her way again !  It is disappointing that my priority to minimise Maureen’s distress is being undermined by a bureaucratic need to carry out meaningless assessments.



Dementia: Understanding Sensory Clues

I have often sang the praises of Teepa Snow on this blog, and I want to spend time this weekend staying close to Maureen and thinking about her presentaion from the perspective of this article:

Dementia and Sensory Cues: Reading the 5 Senses to Understand People with Dementia
A Clinical Pearl by Teepa Snow, MS, OTR/L, FAOTA

Over the last ten years, I have done a lot of research, direct care, and education in dementia. I have learned a great deal about how people living with dementia navigate their world when challenged by the effects of a changing brain. The sensory system – what we see, hear, feel, smell, and taste – continuously takes in, processes, and uses data to help us understand and interact with the world. The challenges you might be experiencing with dementia patients are often a breakdown in the sensory system. So how can we help? Below, you will find a few lessons I’ve learned about observing the “cues” available to us that can improve our work as professional Care Partners.

Notice and Acknowledge

The first and most important step is to notice and acknowledge. If you take the time to observe, you can often discover the abilities a person living with dementia is actually working with at any given moment. If we understand more fully what someone can do, we can choose to support and care for them in a way that meets their needs. This begins with observations, not assumptions about what is happening.

Look for Sensory Cues

All human beings give clues and information about their ability through their interaction with others and the environment. Take an inventory for yourself by honestly observing and respecting how your patients are relating to the world through the five senses.

Visual cues

Observe: What is a person focused on? What do they see that might be different from what you are able to see?

“Visual cues” are a great tool. Vision is the preferred way for human beings to receive information. We like to see. Over time, dementia affects the brain’s occipital lobe impacting a person’s visual field and depth perception. As a result, a person literally may not know you are sitting next to them. They can’t see you, even though you can see them. If you are aware of this, you can move yourself into a person’s visual field before attempting to communicate or care for them.

Auditory cues

Observe: What do they respond to when you speak? Do they respond at all? A lack of response can also be a “cue” about ability in a particular moment.

Do they hear you? Did they actually process what you said? Are they giving you a response that suggests they understood? What is happening in their body that might tell you? Set your client and yourself up for success and look for a “cue” from them to confirm that what you think transpired actually did.

Consider other “cues” that may be helpful. What needs might someone be attempting to meet in their behavior? What are they saying or communicating with their actions?

Dementia affects all 5 senses

It’s important to understand and be aware that over time all 5 senses will change for a person living with dementia: visual abilities, auditory processing and comprehension ability (and please don’t confuse this with the hearing of sound as these are two different things), feeling ability (including touch sensation and the ability associated with motor skills), and the ability to smell and taste.

Everything changes experientially for a person living with dementia and this impacts their behavior, communication, and relationship with others. If we truly understand and are willing to observe their abilities and stretch ourselves by looking at what’s happening through the lens of curiosity, we can further understand and choose to support and care for others in ways that make more sense. These changes in perspective will improve relationships, set realistic goals for Care Partner interactions, and give the person living with dementia a greater sense of personal dignity and worth about their life.

Dementia: Organising Our Days

This post has been lifted from a helpful Web Site and edited slightly.  I intend to use it as a guideline for planning our days, as I encourage others to help us review how our journey is progressing.  It is particularly pertinent after a rather challenging week:

Organising Your Day

Remember to make time for yourself, or include the person with dementia in activities that you enjoy – for example, taking a daily walk.

A person with dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust.

Before making a plan, consider:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or sundowning)

Make sure to allow for flexibility within your daily routine for spontaneous activities.

As dementia progresses, the abilities of a person concerned will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Checklist of Daily Activities to Consider

  • Household chores
  • Mealtimes
  • Personal care
  • Creative activities (music, art, crafts)
  • Intellectual (reading, puzzles)
  • Physical
  • Social
  • Spiritual

When thinking about how to organize the day, consider:

  • What activities work best? Which don’t? Why? (Keep in mind that the success of an activity can vary from day-to-day.)
  • Are there times when there is too much going on or too little to do?
  • Are spontaneous activities enjoyable and easily completed?

Don’t be concerned about filling every minute with an activity. The person with dementia needs a balance of activity and rest, and may need more frequent breaks and varied tasks.

Read more: http://www.alz.org/care/dementia-creating-a-plan.asp#ixzz3qh6gPwps


Dementia: Myopic Mayhem

It’s really surprising after one day off from being a Care Partner how difficult it has been to get back into the swing of things.  After a day of mixing with people in control of their thinking, and reasoning, it has not been easy to cope with  someone who does not always have the luxury of such qualities.  A trip to the opticians yesterday afternoon put the issue into focus – if you will pardon the pun.

We have not been able to find Maureen’s spectacles for a couple of weeks.  We have hunted high and low for them without success.  Last week we missed an appointment with the opticians and were fortunate to be able to retook for yesterday afternoon. Things went well as I managed to get us to Specsavers more or less on time, and testing took place on schedule.

Following Maureen’s test the optician called me over and explained an old pair of glasses of hers that I had found  were varifocals and needed to be thrown away. They were promptly despatched into the charity box, and we went on our way. The test had worn Maureen out, so she decided to leave  choosing new glasses until another time.

When we got home Maureen complained that she was feeling dizzy without her spectacles on.  She claimed that she normally wore her distance glasses, and doubted that they had been missing for a couple of weeks.  In retrospect it was probably a mistake to let the optician dispose of the old varifocals, as this may have added to Maureen’s confusion.

One thing for sure we have an answer to Maureen’s dilemma of not knowing how she is going to spend her day.  On most days she simply can’t remember how she used to fill her time.  Well we’ve got a starter for today:  either find her old glasses, or choose some new ones.  One problem solved but I’m sure others may arise as the day unfolds.

Postscript:  We went to bed together at 9.30 pm last night.   I have been up since around 6 am this morning.  Maureen is convinced I didn’t sleep in the same bed her as last night.  Her eyesight is obviously worse than I thought!

Dementai: Dealing With The Fallout

After my day in London yesterday was a bit like coming home after a holiday: things had changed.  I had to tidy up a little and return one or two things to their normal places.  Maureen’s presentation had also changed; she was quiet and exhausted.   The puzzling thing was that she didn’t mention anything about Sunday and made no reference to her son’s visit.

I am not surprised Maureen was tired.  She will have been in ‘hostess mode’ all day: attempting  to show her recovery from stroke is well underway.  What requires some speculation is why she has not spoken about how she spent her day or asked me about mine.

I would guess that she has dealt with Sunday in the way that she continues to deal with bad experiences.  Her experience of being dumped at a Day Centre is typical of her approach to life: she has never spoken of it again.  So why would she mention Sunday when all it held was disappointment?  What she experienced was disruption in her usual routines; with none of the luxuries of a normal Sunday.  Therefore, it is not surprising that she has not mentioned a day with poor substitutes on the food front, and a lack of the company of her loving husband.  Maureen has spent a life-time burying bad news, and her brain is hard wired to deal with disappointment in that way.

My reading on neuroplasicity, whilst in transit to, and from, London, gives me room for optimism in all of this.  Brains can rewire: the circuits are not in place forever.  In addition there are many who suggest that the protocol of  Prescribed Disengagement is ill conceived and unhelpful to those with a diagnosis of dementia.

It might have  been Monday yesterday but Sunday Roast was administered.  This chef will only ever offer a menu to Maureen that involves Living Beyond Dementia.

Dementia: ‘I Feel Like A Prisoner’

I am posting earlier this morning as I will be leaving for London in an hour.

It is a sobering experience listening to your wife telling you that: ‘she feels like a prisoner in her own home’.  Yesterday morning Maureen was at pains to explain to me how she felt: ‘locked in and no longer able to come and go as she pleased’. I fully accept her feelings on this matter and am trying to address her concerns in a number of ways.vector illustration of a female convict behind bars....... bars are contained in clipping mask - stock vector

My intial response has been to explain the caution that has been applied to her recovery from stroke.  How we have all been very concerned to minimise risks, as she moved from feeling her way around, to finding her way around.  I also admitted that my anxious behavior had not always helped: panicking and calling the police on a couple of occasions has been a little over the top. Later in the day I tried another approach to attempt to help ‘the prisoner relinquish her bonds’.

Have to break off from posting this blog as I can hear shouts from upstairs.  Thankfully all is well but Maureen has been dreaming that she is being chased by an Alsatian.  I may not have mentioned before that she is frightened of dogs, as she remembers one attacking her mum when she was a small child.  So back to the prisoner issue ……

As the sun was shining yesterday afternoon I suggested that Maureen might go out for a while by herself.  I said I would leave her to go off for a while by herself.  I reassured her that if I thought she had been gone for too long I would come and find her.  For whatever reason she decided that she didn’t want to go out at that particular time.

I know that some of my colleagues on Talking Point will shake their heads at my approach to Maureen’s concerns.  I can fully understand their response to what might be seen as a reckless approach to Maureen’s welfare.  However , I would contend that my proposal is the next logical step in Maureen’s recovery from stroke.  She clearly needs to see that ‘my money is where my mouth is’.  I cannot keep saying: ‘she is making an incredible recovery from stroke’ and keep the chains in place.  Every day, and in every way, I have to keep repeating my message that she is not ill she is recovering from stroke.  Prescribed Disengagement will never be the way forward in this household.

Dementia: Oh! What A Night

At 5.30 pm yesterday evening Maureen decided she was tired and it was time to turn in for the night.  I joined her for a while to help her settle down.  Once she was asleep I went downstairs.  She  joined me  a couple of hours later and lay on the sofa while I was watching football on the television.  After about half an hour she said she wanted to go back to bed for more sleep.

After a short while she came downstairs looking very distressed about getting lost upstairs and not being able to find her way around.  I guessed she was nervous about being upstairs alone, and as it was approaching 9 pm, I joined her in bed.

Maureen awoke around midnight and went to the bathroom.   On her return she seemed very confused; not knowing where she normally slept.  She went downstairs to get a drink and eventually found her way back to our bedroom.   She was clearly unhappy about me being in a bed along with her special  pillow and blanket.  So I made my excuses and removed myself to the spare bedroom.  It seemed one of those occasions when Maureen didn’t know who I was or expect us to share her bed.

A short while afterwards I tentatively entered ‘her bedroom’ as I could here her moving around.   I tried to settle her down again and tidied up her bedding.  She was worried about how to turn the lighting of so I asked her ‘where her torch was?’ and she  said: ‘the trouble with this place is there a no locks on the door and things go missing’. Once she was  was settled in bed I turned off the light. we said: ‘night night’ and  left her too it.

Around 3 am I heard Maureen on the prowl again so I delberately coughed and joined her on the landing.  She asked me if I had found my cough medicine and I realised she knew I was her husband this time.  So quickly going into role as her Tea Boy I kept the ‘door open’ to rejoining her in the marital bed.  Once I appeared with the magic brew I slipped into bed and we had the most amazing conversation which I will relay later, shortly before 10 am.

Dementia: Nervous About Away Day

It’s been a long time coming but on Sunday I will visit London to see my daughter.  I’m really looking forward to seeing Anna, as we haven’t had any quality time together for a long time.  Yet I am nervous about how things will be handled at the home base while I’m away.

My biggest fear is that Maureen will wear herself out.  It is likely she will be in ‘hostess mode’ for practically the whole time I’m away.  She will want to show her caers that she is in fine fettle, and the consequences from stroke are a thing of the past.  Her greatest peiod of vulnerability is when her son is here for a couple of hours. They will both be so keen to catch up that his visit alone will be exhausting.

The other concern is that Maureen, as she tires, will become confused by my absence.  In the past despite reassurance from those around her she has thought I have left her.  I sincerely hope there is not a repetition of previous experiences, and she gets confused about which husband is coming back.

It is always difficult to predict with dementia, and trying to anticipate risk is problematic.  What I hope is that those who are looking after Maureen, listen rather than talk, and are compassionate in their communication. Not a lot to wish for but the aftermath will not be good for either of us unless those who are here are very careful.  It’s a real shame that the there hasn’t been time to embed the  Code of Conduct and  the The ‘Gale Force’ Approach To Caring  into the psyche of all who enter our household.