Category Archives: Mixed Dementia

Dementia: A Pilgrimage To Paddington

Mixed Dementia

Image result for paddington station picture

After a great deal of thought, I have decided not to take Maureen with me on my ‘Pilgrimage to Paddington’ a week on Friday.  This has been a hard decision to take as  I wanted my wife to meet two people who have had a significant impact on my life.  Tom Schuller was my supervisor when I completed my dissertation for Master’s Degree at Warwick University and has recently developed ‘The Paula Principle’:

Irving Kirsch’s research was fundamental in helping me to understand that antidepressants were not the solution to my periods of depression:

When Irving’s train pulls in at Paddington Tom is likely to be nearby but Maureen will be in Ashgrove Care Home.  It has eventually been a ‘no brainer’ to leave her in Cleethorpes while I meet my two distinguished colleagues.  It would have been lovely to have had her by my side but the risks associated with a trip to London are insurmountable at this stage of her condition.  We have also made a similar judgement about organising 30 hours of continuous care in our own home with people who have never previously supported Maureen.  We are optimistic that 4 nights in Ashgrove is the kindest way forward and that her colleagues on the ‘Escape Committee’ will welcome her back with open arms.  It will also give me a much-needed opportunity to recharge my batteries.

This morning my pilgrimage is to CleeMedical Centre:

Map of Clee Medical Centre Grimsby Picture

There would have been little point understanding that ‘antidepressants are no better than a placebo for mild to moderate depression’ (Kirsch) unless CMC had a progressive approach to treating depression. Doctors monitored me after I stopped taking mirtazapine, even though a psychiatrist during a spell in a Psychiatric Unit  had advised I had a ‘chemical imbalance’ and needed medication for the rest of my life.  I was also referred to the Practice Counsellor and Paul Martin has helped me to think my way out of depression. My noon meeting with him today is part of a package of measures to keep me mentally well at a time when it would be understandable for depression, once again, to feature in my life.

There are mixed feelings about the visit of our Key Worker and a colleague this afternoon as it represents another milestone in the progression of Maureen’s condition. They will be progressing a DoLS application to deal with her safety in the community.   Initially, I had seen this as a retrograde step but now I understand depriving Maureen of her liberty is necessary to protect her Best Interests and enable her to remain in her own home. This afternoon’s meeting will also be an opportunity to review our Support Packages to ensure that they are meeting our needs.

Footnote: The whole idea that ‘chemical imbalance’ is causing depression has been called into question by Kirsch’s research.

 

Dementia: More In-Home Respite

Mixed Dementia

Image result for Respite Break Dementia Picture

Girl every other Saturday and Sunday put in two excellent shifts at the weekend. Maureen is always pleased to see her and happy to help her around the house.  When I returned from the Leisure Centre on Sunday my senses were aroused on two fronts. Firstly, by the aroma of Sunday Lunch well underway.  Secondly, Maureen looking good with a change of clothing and hair washed following a shower.  What a return from an investment of additional hours personal and domestic care over the weekend.  I’m confident that this afternoon will see even more value for money when Girl Tuesday afternoon puts in another shift.

I almost messed thing up last week by plunging the new kid on the block in at the deep end by mentioning new underwear to Maureen.  Thankfully, Nat King Cole rescued the situation and by the end of her shift, the two girls were good pals.  Her later start time this afternoon will hopefully set us off on an even better the track.

My sister has offered even more respite this coming Saturday.  She and her husband are renting a cottage a few miles away and will be popping into see us during the week. When she said that they will be coming on Saturday and not bother about lunch as they will be bringing it all with them I thought that is what you really call respite: good company and lunch into the bargain!

GREAT NEWS:  I began cognitive stimulation therapy in the community yesterday and as you will see <HERE> we got off to a flying start.  If I keep my nerve and listen to Maureen I’m confident that her progress will turn the heads of our Multi-Disciplinary Team and encourage them to consign Prescribed Disengagement (Swaffer) to the history book!

 

Dementia: Maureen’s Left Foot

Mixed Dementia,

Image result for My Left Foot PictureOur day didn’t go at all as we planned yesterday.  Rain stopped play as far as our trip to Louth was concerned then Maureen’s left foot led to us being housebound until early afternoon.

Maureen’s left foot rarely feels comfortable following her stroke.  It is frequently cold and yesterday’s remedy, two pairs of thermal socks, caused immediate problems.  She sat for quite some time trying to find a way of easing a foot that was probably size eight into a shoe that was size seven.  Eventually, she gave up on the idea suggesting that roller skates or a pushchair might solve the situation.  It is refreshing to hear that she can still think outside the box.

I was really relieved when Girl every other Saturday arrived at noon.  I had misread a letter from her Care Agency and expecting a  new kid on the block I had cancelled the call.  What I had missed was that this change is going to take place next week because the other weekender is no longer working for the Agency.  This is a real pity as we will be losing someone else who Maureen liked and will be facing another period of uncertainty.

Maureen’s problems with her foot faded once she was in the company of another woman.  She spent the next couple of hours chatting, joining in with preparations for lunch and tidying up the house.  How fortunate our Key Worker realised that I had got it wrong and did not cancel the call!

Our evening stroll took the normal circular route with me commenting on landmarks as we walked around what I hope is becoming familiar territory.  I didn’t let go of Maureen’s hand during our walk.  However,  I’m hoping I might be able to relax a little as we repeat the exercise.  I have to play this one very carefully as I have warned off engaging in any ‘positive risk taking in the community’.  It would be reckless for me to go down this road until I have cleared my strategy for giving Maureen an element of freedom with professional staff.

We finished the evening off with ‘The Great Parsnip Hunt’.  If they are not on the plate for Sunday Dinner the Resident Chef would be on a Final Warning.  As our local Spa Stores rarely stocks this precious vegetable we ventured into Cleethorpes to ensure that they will be on the menu today.  It was good to see that Maureen didn’t appear to feel out of place in the unfamiliar surroundings. of Cleethorpes Coop.

It’s a fairly bright start to the morning and we haven’t any fixed plans today.  If the going is good I might pop to the Leisure Centre and leave the girls to prepare vegetables for the return of the Resident Chef.  I just wonder if I could ever teach Maureen to Chef again but I think forgetting how to cook might just be a ‘Cunning Plan’ on her behalf!

Dementia: Fabulous Friday

Mixed Dementia,

Image result for fabulous friday pictures

Lots of good things happened yesterday hence Fabulous Friday:

  • Girl Friday put in another sterling performance engaging Maureen throughout her visit.  We will miss her when she goes on Maternity Leave.
  • Maureen’s Occupational Therapist called to offer support on cognitive stimulation.  She assured me that I was ‘doing all the right things’ and warmed to my ideas on community cognitive stimulation.  We have agreed to touch base at the end of next week to review progress on CCS.
  • Two Community Support Officers called following a chance meeting with their sergeant the previous evening.  They have us on their radar and will support us in all sorts of ways.
  • Maureen really came good in an evening visit to our local Spa Stores.  She reminded me that we needed sugar and looked very comfortable as we searched for bargains.

We had planned to go to Louth today as Maureen was keen to add to her wardrobe.  Unfortunately, after a beautiful sunrise rain has set in but the weather is not going to spoil our day.  If it remains wet we will call to see the friendly stallholder in Freeman Street Market.

Dementia: Rescued By The Police Again

Mixed Dementia,

Image result for Humberside police pictureAfter we had placed our cross on the ballot paper last night a local Police Officer became my hero once again. On a previous occasion, his team had found Maureen when she got lost on a nearby Holiday Camp.  This time, he helped to bring her down to earth after a period of chronic uncertainty after a visit by her son.  As soon as she heard his voice she remembered him and this shifted her reality from the confusion concerning events earlier in the day.  The added bonus was that he is going to arrange for one of his officers to help me process the Herbert Protocol.

Maureen’s presentation yesterday afternoon led me to the conclusion that family members who are only able to visit us occasionally are now on ‘Mission Impossible’. It must be difficult for busy visitors to grasp how to play it when Maureen puts herself in the Hostess Mode.  They are unlikely to see through her act and understand what it takes out of her to put on a special performance for their benefit.

Half an hour after her son left it became clear that Maureen had no idea who he was.  An hour later she had no recollection of having a visitor – her focus was on ‘a missing lady and catching a plane’.

I think there is no alternative than to run with what happens when visitors from a distance away visit.  It is becoming Mission Impossible to help them to understand the progression of Maureen’s condition and resist behaving as they always have.  Thank goodness you can always depend on the Boys in Blue when you need them!

Footnote: My Good Music page will give you a hint as to how we voted last night.

Dementia: Moving Ahead

Mixed Dementia

Pravs J - Keep Moving Ahead

I have decided not to tempt fate by calling yesterday ‘Wonderful Wednesday’ because as soon I sat on the physio’s table at 8.30 am I  knew that it was going to be a good day.  In capable hands once again, I realised that the sleepless nights because of severe pain in my right shoulder were coming to an end.  My destiny on that front is now in my own hands; do the exercises, pay for private treatment and all will be well.  A couple of hours later things became clearer and got even better.

Harrison House is across the road from St Hughs Hospital and the cafe was a sensible place to meet our Key Worker.  We often meet there as it gives me the opportunity to thank the staff who supported me during my darkest hour.  Yesterday, I had the pleasure of meeting a Psychiatric Doctor who had recently become a Consultant: he was genuinely pleased with my congratulations and my ongoing praise for his support.

As always, I  had a productive meeting with our Key Worker.  He helped me to see that my panic over the DoLS issue was understandable but rather misplaced.  Although Maureen’s liberty has to be restricted at this moment in time (see below) it is a means of her remaining safe in her own home.  We also discussed a number of other matters in relation to our Support Package which it would not be appropriate to outline here.

The cream on the cake came during late afternoon with the arrival of a builder to look at the plans for our Day Room.  He had been recommended by a tradesman that we trust and I immediately liked his style, especially with Maureen.   As soon as I explained our situation his empathy and understanding was clear: his personal experience obvious – his mother passed away following a period of dementia.  I hope it won’t be long before he’s ‘digging out’ to lay the foundations to improve the state of ‘Maureen’s Care Home’!

Footnote:  The current Occupational Therapy assessment is that Maureen is not safe in the community unless she is escorted.  I’ve had a successful career in the field of Lifelong Learning and we need to consider if it is possible for me to teach Maureen how to become safe in the community once again.

 

 

Dementia: The Shape Of Things To Come?

Mixed Dementia,

 

Image result for The Shape Of things To Come With Dementia Picture

I’m drafting this post at 11 ‘o’ clock at night hoping that Maureen will fall asleep while she is downstairs by herself.  It is pretty wild outside so it is not a good time to wander the streets with her as she tries to find her way home to her husband and children.  She is aware that I have locked her in and has accused me of ‘losing it’.  This is a rather disappointing end to a very pleasant evening listening to some of our favourite records.

Nat King Cole dug me out of a hole earlier in the day after Maureen reacted with hostility when I suggested that she might like to go shopping with a new carer.  She remonstrated with me strongly to that suggestion making it very clear that ‘I should stop trying to interfere in her life’.  Half an hour later she was singing and dancing with the new kid on the block as Nat serenaded them both.   Girl Tuesday afternoon will be back next week at a slightly later time.

I’m now on another steep learning curve of how to balance Maureen’s safety whilst minimising her distress.  I would still contend that it is premature for a DoLS application as that might well restrict my room to negotiate a pragmatic way forward.  This is one of the many issues I need to discuss with our Key Worker when we meet at 9.30 in the morning.

Update at 7 am:  The night passed relatively peacefully with Maureen eventually making her way upstairs.  She woke a couple of times in the night concerned about the welfare and whereabouts of her mum.

Maureen’s demanour this morning has me completely baffled.  She is trying to work out if we are married and if she has been down the aisle on a previous occasion.  Whilst her confusion on her marital status is paramount all underwear is in place for the first time in ages:  perhaps she has called time on being a member of Women’s Lib!

 

 

Dementia: Please Cut Us Some Slack On DoLS

Mixed Dementia, ,

Image result for deprivation of liberty safeguards picture

It was clearly not in Maureen’s Best Interests to let her walk by herself yesterday because the pavement was littered with preparation for the ‘Bin Men’s’ arrival this morning  So last night I stayed by her side during Circuit Training and commented on our route as we walked hand in hand.  I’m seeking to break down our route so that it becomes so familiar to Maureen that she will be able to walk around the block almost with her eyes closed.

I would assert that at this moment in time it is not in Maureen’s Best Interests to seek approval from the Court of Protection for DoLS within our home.   Professional staff who have to work within the confines of the Mental Capacity Act are seeking to move swiftly down that road.  I’m hoping to buy a little more time to see if Maureen can become safe in the community once again.

The Mental Capacity Act and DoLS are new territories for me.  I will be embarking on an eLearning exercise and seeking guidance from a number of quarters this morning. What I’m hoping is to discover is means of maintaining Maureen’s liberty for a while longer.

I have deliberately let our milk stocks run low this morning anticipating that Maureen will accompany me to our Spa Stores again shortly.   She was with me almost as they opened yesterday morning seemingly at home in the company of friendly faces.  If I encourage her to take ‘baby steps’ there is so much more to come from our early morning trips down the road.  Where better to seek cognitive stimulation than in the community? It would be hypocritical for me to see any other way forward after my lengthy professional career as a Community Educator.

I’m not convinced that Maureen’s presentation at the moment is just about the progression of dementia.  I think it is predominantly a reaction to her stay in Ashgrove.   She is terrified this morning of being left by herself. Yesterday, she was afraid that I would put her in the hospital again – her explanation for a recent stay in a Care Home.  I was tempted to tell her that I couldn’t afford to do that as they have overcharged us and still cannot find some missing items of clothing.  She has also told me she doesn’t want another baby: her description of the pain she endured following the work of District Nurses to cure her severe constipation.

Image result for superwoman pictures

There are possibilities for a really positive development this afternoon.  I have engaged a Private Carer for a couple of hours.  She is a Dementia Specialist and  I have tasked her with solving the great underwear crisis. This is not to persuade Maureen from dressing like Superwoman.  I solved that yesterday following advice from our Key Worker.  It is to help Maureen find underwear that she feels comfortable in.  I’m sure my models in M&S will miss me but all good things have to come to an end!

Dementia: Dealing With DOLs

Mixed Dementia,

Image result for Deprivation of Liberty Safeguards Picture

After Maureen’s Run Away Day professional staff are considering if they should apply for a DOLs order in her own home.  It can be argued that DOLs is the best way of keeping Maureen safe in the community but there are serious shortcomings of this approach.

While we were out walking yesterday evening Maureen thought we would be in trouble as she had got the impression that: ‘they thought she was stupid and should be locked in the house’.  She had told Girl Friday a similar story: ‘that her cousin had told her that she was no longer allowed out’.

I have decided to address the DOLs concerns with Circuit Training.  We started the programme last night with several walks around the block.  Maureen may not have remembered the route but her pleasant memories of walking hand in hand will remain: feeling matter (Sheard):

Our Training tonight training will be moved up a notch as I let go of her hand for short periods of time and encourage her to stroll around safe areas under her own steam i.e. set her off at one end of a Close and meet her at the other.

If Maureen believes she is ‘stupid’ then we are on the road to Prescribed Disengagement:

With luck ideas, concerning DOLs can remain where they are best kept: on the shelf!

Dementia: Following The Dementia Sherpa Pays Off

Mixed Dementia,

Image result for tHE dEMENTIA sHERPA pICTURE

I have never been fond of the concept of ‘going with the flow’ as an approach to being a Care Partner: it has always seemed too liberal for me.  When I read the Dementia Sherpa’s thinking it seemed more my style.  As we searched for Jamie yesterday afternoon I think Christy’s hand was close by and led me to the distraction that we needed.  Her guidance also helped me to fill in gaps about Maureen’s recent experience in Respite Care.

When Maureen became concerned that Jamie had gone missing again yesterday afternoon I suggested that we should go and look for him.  As we searched around our neighbourhood the little boy that Maureen believes she plays tag with was nowhere to be seen.  She assured me that he can’t run fast enough to catch her but he is great fun to play with.  I tried to reassure her that he was probably in the safe care of his mother but she didn’t think he would be able to find his way home.  Fortunately, as Maureen was becoming increasingly upset distraction arrived before our eyes with one of our neighbours walking with her daughter whilst pushing a pram.  When her daughter addressed Maureen by name I suddenly twigged: she had cared for Maureen when she had been in Ashgrove.

Maureen enjoyed admiring the baby and exchanging with her great grandmother but she clearly had no recollection of her daughter.  Despite several prompts, it soon became clear that Maureen had no recollection of being in Ashgrove less than a fortnight ago.   However, there were two important things that I  learned during our exchanges.  Firstly, Maureen had hardly slept while she had been she had been in Residential Care.  Secondly, there had been an exodus of staff from Ashgrove who have joined the previous Manager at a neighbouring Care Home.

I’m  clear that Fiblets are a part of my style as Maureen’s Care Partner: honesty is the best policy.  I don’t think it is too much to ask for Care Homes to open the books and let their clients know what is really going on in their neck of the woods.  Is it too much to ask that they provide a basic written report on how things have gone while a loved one has been in their care and that it doesn’t take so long for missing clothing to be returned to the owner?

Footnote: It’s rough terrain early doors as Maureen is on my case about her car and me taking it out and leaving her at home.  I might have to get on my bike today!