Category Archives: Mixed Dementia

Dementia: I’m Counting My Blessings

Mixed Dementia,

One week has passed since the Best Interest Meeting that considered Maureen’s future care and accommodation.  The decision for Maureen to stay at home was one that I welcomed and I doubt there was any dissension in the room.  Unfortunately, it is no simple matter to secure wall to wall care for 72 hours to give me long weekend breaks once a month.  I have now accepted that my plans to have three nights away in a weeks time are not going to happen so I will be seeking additional carer sits with known faces from next week.

Sorting out my long weekends is going to take some time but there have been some really positive developments this week:

  • Occupational Therapy involvement is going to be ongoing with a hand stair rail and aids to make bathing easier already on order.
  • My meeting with a Carer Support worker went well yesterday.  This emotional and practical support will now be ongoing.
  • This morning will be the first of fortnightly meetings with my Admiral Nurse to review how things have gone and plan ahead.

There is no doubt that our Multi-Disciplinary Team has been very thorough in attempting to provide support that is appropriate to Maureen’s current presentation.   We are very fortunate to live in an area of the country where there are genuine attempts to support carers and their loved ones.  Once again I count my blessings over our decision to move to North East Lincolnshire!

Dementia: Pie In The Sky

Mixed Dementia

Image result for Pie in the sky pictureIt’s beginning to dawn on me that the idea of having a long weekend break this month is pie in the sky.  None of our usual Care Agencies are going to be able to provide the 72 hours of consecutive support that Maureen would need.  It would be unwise to go further afield and leave Maureen at the mercy of unknown carers.

In my blog yesterday I explained my reluctance to go to the fallback position of putting Maureen in a Care Home. Unfortunately, her family made it known at the Best Interest Meeting last week that they are unable to lend a hand.  Therefore,  a couple of days away together in an adult only accommodation might be the only way of getting a break.  I will explore this possibility at the meetings that are scheduled to take place today and tomorrow.

Maureen eventually lost her patience with our visitors yesterday and reared up on the Occupational Therapist with a diatribe that didn’t quite make sense.  Her Care Coordinator sensibly called time on their visit at this point. This was a rather unfortunate end to be an initial exploration of our set-up here that convinces me the OT will be a force for good in out lives.

Maureen also reared up on me just before she turned in for the night; hurling blankets at me because she was frightened that ‘a boy was going to be in her bed again’.  She doesn’t appear to be frightened this morning but is holding onto a photo of a little girl along with her mum and dad.  If only the little girl (her daughter) was still alive Maureen would be a very different person trying to make sense of her dementia and the infrequent visits of the remaining members of her family.

Dementia: Deprivation of Liberty Safeguards

Mixed Dementia

Image result for deprivation of liberty safeguards picture

Musical beds took on a new dimension last night when I was ‘sent off’ – evicted from the bed in our spare room.  I had gone to bed before 10 pm as my leg pain was making it difficult to stand let alone walk.  Maureen joined me some later asking me if it was ok for us both to be in the same bed.  A conversation arose early in the morning and my contribution led to me being told to leave the bed and go into the spare room.  I beat a hasty retreat to the marital bedroom where I remained for the rest of the morning.

I’m looking forward to the arrival of Maureen’s Care Coordinator along with an Occupational Therapist this morning.  It is an opportunity to have discussions about how to make our home a safer and more stimulating place for Maureen.  The one cloud on the horizon is  DoLS and this sensitive issue will be on the agenda this morning.

I hadn’t realised that DoLS needs to be explored in the home environment.   When I reflect beyond my initial concern about such discussions I’m optimistic that it will be possible to consider how dementia has the potential to deprive us both of our liberty and how safeguarding can protect us both.  It is fortunate that I was able to obtain wise counsel on this matter from several sources yesterday and now see today as an opportunity rather than a further nail in the coffin of the independence that Maureen craves!

Dementia: Moving Forward

Mixed Dementia

This week is an opportunity to move forward following Thursday’s  Best Interest Meeting with three meetings already scheduled:

Related imageTuesday:  Maureen’s Care Coordinator is here with an Occupational Therapist to give us advice on how to make our home a safer and more stimulating environment.

Wednesday:  I have a meeting with a Carer Support Worker to explore how she might be able to make my load a little lighter.

Thursday: I have a meeting with my Admiral Nurse as the start of a schedule of fortnightly meetings to review my role as Maureen’s Care Partner.  These meetings will offer the support/supervision that I have been seeking.

It also seems likely that I will need to meet our Key Worker at some time during the week for a progress report on the arrangements for Maureen’s care during the first of my long weekend breaks.  The thought of a break in a couple of weeks will hopefully keep me going as Maureen’s presentation becomes even more challenging by the day!

Dementia: It’s Working

Mixed Dementia,

Image result for It's Working Dementia Picture

I’m now sleeping upstairs at night following the removal of the single bed from our lounge.  Maureen still plays Musical Beds generally spending some of her time in the marital bedroom after an earlier stint on the sofa.  I initially take to the spare room and only join her following invitation.

There was a real bonus yesterday when Maureen told me she ‘had a young man in her bed on Thursday morning’.  I thought it would have been reckless to have mentioned this at the Best Interest Meeting a few hours later as  I didn’t want to risk any further ideas about the need for a Capacity Assessment on this front.

It’s clearly Maureen’s emotional memory that allows her to recall the events of  Thursday morning.  To be called a young man at the age of 71 is rather reassuring!

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: Walking In The Sunshine

Mixed Dementia,

Image result for walking in the sunshine picture

Maureen excelled in the beautiful sunshine that we both enjoyed here in Cleethorpes yesterday afternoon.  I could hardly hold back the tears as I saw my lovely wife walking and talking in the streets of Humberston.

She was a little nervous as I encouraged her to walk around Royal Court alone.  I was able to watch her until the corner and shout words of encouragement as she hesitated at the sound of a barking dog but she looked back at me and walked on.  I stood rather nervously at the other end of the Court until she came into sight.  As soon as I saw her I shouted words of encouragement and was pleased when she returned my greeting.

There were lots of people out in their front gardens as we continued on our stroll.  We stopped and chatted as we ambled along and Maureen was keen to interact with the gardeners.  I think her enthusiasm was sparked by making new acquaintances: she hates it when she can’t remember who people are.

Towards the end of our walk, a gentleman recognised that I was wearing a Coventry City shirt and we stood for almost half an hour chatting to him about all sorts of things. Maureen loved talking to this man as she was able to contribute to the conversation about Coventry and coal mining.  He had been a surveyor in the mining industry something that surrounded Maureen in her childhood.

I’m not sure what the weather forecast is for today but it is another day when opportunity knocks as I have cancelled the carer sit as it would have been a newbie.  If the sun shines on us today who knows what we might get up to.  My money is on Maureen proving the doubters wrong as confidence may be the issue on some fronts rather than capacity.   If I’m patient and continue with positive risk taking my money is on the butterfly emerging from her chrysalis as spring moves into summer.

The only downside of yesterday was that Girl Monday/Friday was still on holiday.  This means that Maureen won’t hear her ‘good news’ until Friday but I understand she may be already be booked in for babysitting.  It also looks likely that our longest serving carer will not be at the Best Interest Meeting on Thursday and I have therefore suggested another postponement until she is available.  The way things are going she might even have to bring the baby to the meeting!

 

Dementia: Still Riding The Roller Coaster

Mixed Dementia,

Image result for Riding The roller coaster of dementia picture

Amazing Susan Macaulay never said a truer word than in her comment yesterday:

‘Such a roller coaster 😦‘.

I had one heck of a ride yesterday often finding it difficult to console Maureen when she was frightened out of her wits.  How on earth she coped when she was even unclear who the only person who was here to support her was I will never know.

Despite feeling exhausted I have decided to try to tough it out until the Best Interest Meeting on Thursday.  Although I have never been one for more than The Walzer’s I need to ‘stay on the ride’ until I can get together with our Multi-Disciplinary Team to discuss where we go from here.