Tag Archives: Respite

Dementia: The Tablet Tinderbox

Mixed Dementia, ,

Image result for Dementia Medication Picture

Maureen and I have never been a couple who have taken any medication willingly.  We are great believers in ‘physician heal thyself’ and won’t even take painkillers unless the discomfort becomes unbearable.  Considering Maureen has had a stroke and has suffered from high blood pressures for years the medication she has to take is minimal:  one tablet in the morning and another in the evening.  She has refused to take a statin and her G P and I have given up on this battle.

Despite being told on numerous occasions that she is on her current medication for life Maureen still wages a campaign to be tablet free.  She took up the mantel again last night and refused her early evening medication – questioning if I had the authority to give her tablets.  Four hours later she woke me up from my slumbers worried that she had missed her tablets.  When I offered them to her she refused them once again as I was not a chemist or a Doctor.  Two hours later I heard her crying for her mum via the baby alarm.  When I made it downstairs she was terrified that she had missed her tablets and had put her life at risk.

Earlier in the evening, there had been shenanigans over cleaning her teeth.  Neither of the toothbrushes I presented belonged to her and were being used by others.  This is not an unusual series of events.  It is possible that not cleaning her teeth and finding it unpalatable to use a mouthwash are contributing to having a sore mouth and tongue: a condition that has now become chronic.

This morning a new challenge presented itself –  how to get out of the bath quickly to attend to my distressed wife.  Soaking in an Epson salts the bath is great but it is not easy to get in or our since my hip replacements.  I slipped and cursed at my first attempt: perhaps doing more harm than the good of the bath.  When I eventually arrived at Maureen’s side she was ‘wanting to go home to Nottingham to be with her family’.  She cannot understand ‘why she is being imprisoned here as she has done nothing wrong’. Today is a good day for distraction and redirection as a trip to Freeman Street Market is a fixed feast.

My first scheduled long weekend seems a very long two weeks away at the moment.  My accommodation at the Buddhist Meditation Centre in Pocklington is booked, as it is for the remainder of the year but home-based care for Maureen is not yet in place.   Her challenging presentation shows no sign of letting up and leaves me wondering whether I should have stuck to my guns on Thursday.  My wavering on the need for the immediate respite continues to put me at risk of Carer Burnout and was certainly not in my Best Interest!

 

Dementia: It Has To Be Gentle Persuasion

Mixed Dementia,

Image result for Gentle Persuasion Picture

The Best Interest Meeting to discuss Maureen’s future care and accommodation is now hours way.  It is an opportunity for family members to get together with the Multi-Disciplinary Team to discuss the best way forward.

This morning Maureen has returned her theme that she doesn’t live here.  Yesterday morning she was talking about going back to Nottingham to live with her sister.  During the afternoon she was telling her aunt that she would like to go back to Coventry where she has lots of friends.

I am never clear who Maureen thinks I am.  On occasions I’m her husband, at other times I am her dad, grandad, ex-husband, or manager of this Care Home.

Maureen no longer knows what time, day or season it is.  She has been worrying this morning that she has no clothes that will be warm enough for this time of year.  Whenever she wakes up from sleeping it is time for breakfast, even after a late evening nap.

This morning’s meeting is an opportunity for all parties to put their cards on the table and for the Decision Maker to determine Maureen’s future care and accommodation.  I’m pretty tired at the moment and my immediate priority is to get a break from my caring responsibilities.  Holmfield House is primed to receive Maureen this afternoon and subject to assessment could accommodate her for a week.  However, I do not think it is in our Best Interests for me to trick her into a week in a Care Home: I’m quite clear about that!  What I still have a nagging doubt about is whether a holiday in an Adult Only Hotel would be a better option for sustaining our close relationship.  Once again the problem remains on how we shift Maureen from the sofa.  Whichever option is decided upon: gentle persuasion has to be in our Best Interest rather than trickery!

You will gather that there is uncertainty about where Maureen will sleep tonight.  We often play Musical Beds here and last night we slept well together in the marital bedroom: taking the single bed out of the lounge may have worked!

 

Dementia: ‘I’m Not Lost!’

Mixed Dementia, ,

Image result for I'm not lost Picture

Maureen has thrown down the gauntlet about being allowed to be out on her own.  She was reluctant to accompany me to the corner shop yesterday afternoon and when I returned she had gone out.  When I went to find her she said ‘why are you looking for me I’m not lost?’ The interesting thing is that she was walking around the Court that I had encouraged her to follow the previous afternoon.  I think I now have to pluck up the courage to let her go off by herself and wait in the house until she returns.  I’m wondering if it is a good time to suggest using the Digital Tracker that I bought some time ago and Maureen declined to use.  I also have a similar dilemma over changing our sleeping arrangements’

I’m not sure if sleeping on a single bed in the lounge is achieving anything.  What it may be doing is encouraging Maureen to sleep on the sofa rather than retiring to a bedroom. My inclination is to take the bed back upstairs – yet again – and see what happens.

Maureen may not feel that she is lost when she is walking out by herself but I often feel spoiled for choice in how to respond to her presentation.  My Admiral Nurse is on holiday at the moment and I have chatted to one of her colleagues a couple of times already this week.  She has suggested reframing my suggestion that we need a holiday.  If Maureen takes up the bait it would be interesting to see how we cope with a couple of days in new surroundings.  The plan is to be on holiday close to the family members in the Midlands who Maureen is crying out for more contact with: predominantly her granddaughter.   What a shame it will not be possible to meet her parents: I’m sure ‘Union Jack’ and I would have had lots to talk about and I would have loved to have met his ‘Diamond Lill’.

While I’m on the subject of holidays we will need a World Cruise to thank all the people who support us via this blog.  I’m particularly grateful to Di Brooks this morning as she suggested taking an Epson salts bath which has been so refreshing.  I would recommend anyone to read her Blog where she shared her experience of being a Care Partner to her late husband so openly.

It is my six weekly appointment with my Counsellor this morning.  Ironically it is exactly 24 hours away from the Best Interest Meeting.  How fortunate I am to be able to chat over the challenges in my life with someone who has such an extensive understanding of dementia.

 

Dementia: It’s Good News Week

minimising distress, , ,
  • Maureen will be overjoyed this morning with good news from Girl Monday.
  • The Best Interest Meeting is now only days away.
  • Spring is here and Maureen wants to be out in the fresh air.
  • Maureen went for a walk on Saturday and Sunday and found her way back home.
  • The repainted green doors are helping Maureen find her own way to the bathroom.
  • Reorganising our bookcase is providing another creative outlet for Maureen.
  • Professional advice is pending to make our house, even more, dementia friendly.
  • I am learning to sleep when Maureen rests thereby easing my sleep deficit.
  • I have found a Care Home that may be suitable for a Respite Break.
  • Family members are reviewing their availability for providing additional support.

I had a great day yesterday watching the Sky Blues win the Checkatrade Trophy on TV. Coventry is often seen as the Phoenix rising from the ashes.  Perhaps dementia has been our blitz and we can find a way to rebuild our lives.  How fortunate that Thursday offers an opportunity for such discussions.

Oh, I nearly forgot about the Roller Coaster:  it had a day off yesterday!

Dementia: Lost, Confused and Bewildered

Mixed Dementia,

Image result for Lost and Bewildered picture

We are both struggling this morning.  Maureen clearly doesn’t know where she or who I am.  A short while ago she told me that lots of men were telling her they were her husband.  She also keeps asking me if we are going to go home today.  These themes are not new but she appears to be more frightened than I have ever seen her as she tries to deal with her confusion.

I’m also bewildered this morning by two things that appear to be lost.  I have spent ages looking for one of Maureen’s favourite slippers.   They are particularly precious to her as she bought them with some money her sister sent her shortly after her stroke.  I have hunted high and low in all the normal hidey-hole’s and they are nowhere to be seen.  I’m also similarly mystified where a plastic container with all the remedies for Maureen’s sore mouth and tongue has gone.

Maureen is now spending an increasingly amount of time being lost.  Her ability to recall is minimal – on rising this morning she became very distressed that she couldn’t find her way back to where she had been sleeping.  She continues to struggle to find her belongings and the accusations about people stealing her things is now a daily occurrence.  These aspects of her current presentation would hardly be helped by moving her out of her current surroundings into a Care Home so that her Care Partner can have a much-needed rest: home based care remains the safest option!

Dementia: Compassionate Company

Mixed Dementia,

Image result for Compassionate Company Picture

Although yesterday was a little disappointing we both had the pleasure of enjoying some compassionate company.   Wayne our chauffeur, like all of the staff of Airport Travel, treated Maureen with dignity and respect.   From the time of our arrival at Madyhamaka to our departure lots of people went out of their way to make our short stay as comfortable as possible.  It was refreshing to see Maureen treated as a person rather than someone who has dementia.  What a lovely change from the approach of many who darken our door and under the guise of a person-centred-approach cannot see beyond her diagnosis.

 

Dementia: As Blind As A Bat?

General, ,

Image result for Blind As A Bat pictureYesterday’s  visit to Madyhamaka failed to get me the respite I was seeking.  Maureen didn’t like it in a strange place – particularly as she was thinking that we were going to visit her mother.  The whole experience has left us both worn out and put Maureen on red alert about my motivation for doing anything.

When I reflect on my aspirations yesterday they were a clear indication of myopia: a short-sighted approach to the real issues here. The issue isn’t  about seeking some form of a Respite Break it is concerned with getting more rest from my role as a Care Partner.  It is fortunate that I’m due to meet our Key Worker this morning.  Unfortunately, his agenda is preparation for the Best Interest Meeting; while mine is how to increase my opportunities for rest until we gather on the 6th of April.

As Maureen thought I ‘tricked her’ again yesterday I think it would be unwise to carry out our ‘cunning plan’ on Friday.  Care Homes and Maureen do not mix and to con her that she is just going out for a meal and then leave her at Homefield House would lead to accusations that I had gone completely ‘batty’!

Dementia: Seeking Respite At Madyhamaka

Mixed Dementia,

I will try and persuade Maureen to accompany me to the Buddhist Meditation Centre at Pocklington today.  Airport Travel is on hand to chauffeur us for the short break that we both desperately need.  The thought of being served wonderful food along with compassionate people in beautiful countryside lifts my spirits and eases the pain in my aching body.

Maureen was reluctant to go anywhere yesterday: she appeared to greet my suggestions for a day out with suspicion.  What she doesn’t understand is that time is running out for us to demonstrate that there are there are ways of me recharging my batteries without putting her in a Care Home.

My discussion with the staff at Homefield House went well yesterday and we have a plan to introduce Maureen on Friday that aims to minimise her distress.  It is very different to similar facilities I have seen in the area.  As our Key Worker implied it is akin to a place where Ladies Lunch with waitress service and sherry served with meals.  Despite its many positives, it is a Care Home and I anticipate that Maureen may see what it is and react accordingly.  I am also unclear whether the level of stimulation that Maureen needs will be available from fellow residents.   All we can do is stick to our ‘cunning plan’ and react accordingly.

If I am unable to persuade Maureen to take a break at Madyhamaka we are likely to face the one size fits all approach to dementia – Respite in a Care Home.  The Best Interest Meeting is likely to remind me ‘that I’m not a robot’, as our Care Coordinator pointed out the other day, and want to ensure specific arrangements are in place so that I continue to have the energy to look after Maureen in our own home.

Dementia: Procrastination and Patience

Mixed Dementia

Image result for Procrastination and Patience Picture

We have slept together in the marital bedroom for most of the last 8 hours.  It wasn’t a bad night as Maureen only woke a couple of times.  When she woke the second time, convinced she had lost Maeve from sleeping beside her, it took over half an hour before she accepted she had been dreaming.  It wasn’t surprising she had been thinking about her ‘missing’ granddaughter as there had been lots of chat about her during Sunday afternoon.  Her dream is a prime example of her inability to recall as was her distress just before we turned in when I was out of sight for a few minutes and she said she hadn’t seen me for hours.

Within a couple of hours of their departure, Maureen had no recollection of her visitors on Mother’s Day.  In fact, she asked me if her son had been as she couldn’t remember seeing him.  How sad that she had no recollection of the couple of hours she had spent with her son, his wife and their four children.  Her focus on Maeve had arisen because our visitors were on their way back home from her 18th Birthday Party.  It is also sad because Maeve used to be a regular visitor when her mother was alive and she hasn’t been here for some time.

Maureen is still at home because the Care Home I have in mind for a Resite Break was understandably unable to carry out an assessment yesterday.  I have an appointment to meet the manager at 11 am to discuss how we can encourage Maureen to take up temporary residence with the minimum of distress.  Procrastination is indeed the thief of time but patience has to be paramount if I am to get the break I so dearly need!

Dementia: Seeking Immediate Respite

Mixed Dementia,

Image result for Preventing Care Burnout Picture

This is a live feed at 4 am as Maureen onslaught of the last few days shows no sign of running out of steam.  She ‘doesn’t want to be here has no trust in me’ and continues to list my shortcomings.  I am exhausted and there are questions about my ability to keep her safe and protect my own welfare: something has to give and today may be a good time to seek a temporary resolution.

I am reluctant to give detail after previous false starts but I think I have found a Care Home that can meet Maureen’s needs.  The problems associated with getting her there could be resolved today with the support of one of her sons.  He will be arriving with his family later this morning and it is possible that we will be able to move Maureen into a place where her needs can be met with a minimum of distress.