Category Archives: General

Dementia: Bad Hair Day With Excellent Late Night Show

General

Yesterday was a game of two halves, to use a football analogy.  Maureen didn’t find it easy early doors but came into her own, as the match went on.

Shortly after kick off, things seemed to be going well.  Maureen arrived downstairs as Gail our carer arrived.  She greeted her like a long lost friend that she hadn’t seen for ages.  Obviously no recollection of the previous week when she was telling Gail we didn’t need carers any longer.

Following my ‘cunning plan’ Gail went out on a shopping mission.  Maureen and I had  breakfast together and things seemed to be on schedule.  When Gail returned Maureen helped with putting the shopping away.

Lunch went ahead as normal, with Maureen displaying a healthy appetite.  She sang along to Christmas Carols as she munched away on another one of my Italian creations.  Once again I scored well for my efforts: particularly on a rather delicious sweet; with ice cream of course.   Following lunch we moved into siesta mode with Maureen managing an hour on the sofa.  When she awoke there was a hint that the hairdressing appointment was a bridge too far.

After around half an hour of upset I encourage Maureen to abandon the trip to let Mark shorten her hair.  The prospect of sitting in a hairdresser’s chair just wasn’t palatable for Maureen on this occasion.  At my suggestion she took to her bed with the only clothes that felt comfortable – her P J’s.  Once again all clothing was too tight and causing distress.

Maureen’s performance in the evening would have got her a ‘Woman of the Match’ award.  Once she had slept for an hour or so in bed, a different player emerged from the tunnel.  She was great company at the tea table singing along, once again, to anything the resident D J put on the deck.  Following tea she accompanied me on a short trip around Tesco and coped well.  On our return she held her own in conversation with two sets of neighbours in the street.

As the match (evening) was drawing to a close she put in a sterling performance.  She searched for her new specs and eventually seemed settled with using her distance glasses to watch T V – quite amazing after the difficulties at the opticians on Monday.

What will today bring?  I have no idea!  Maureen has woken early with a heavy cold.  She may go to see her G P: she may not.  All I can do is try to minimise distress and capitalise upon opportunities for cognitive stimulation.  It makes for an interesting life!

 

 

 

 

 

Dementia: Opportunity Knocks Again

General

If I’m careful today could be a platform for moving forward on this hazardous journey.  It is one of those occasions where I have to take note of nitram a colleague from Talking Point  who asserts: ‘fail to plan – plan to fail’.

The good news is that the new glasses are in the bag: no they are in the drawer.  Not that we are over the rapids just yet, as concern remains about the prescription and frames.  SpecSavers have excelled in their support to Maureen and thanks will be duly recorded by E Mail.  If I can nudge the wearing of glasses then all sorts of possibilities open up, as Maureen will be able to read again.  I must remember to go slowly on this one otherwise I will blow it.

If my luck holds today Maureen may just go through with allowing Mark to work his magic on her hair.  It is longer than I have ever seen it: even in photographs before we met.  Mark is excellent with Maureen as he is very dementia aware.  My problem may well be getting her through his door as tiredness may become an added reason not to have a cut and blow dry: even a few highlights.

I have a ‘cunning plan’ to improve the chances of Maureen making it to 4 pm without being on the brink of collapse.  If I can encourage her to take a couple of naps in the day the odds move in her favour.  Gail is due at 10 am and she always cooperates in our plans.  Some shopping is needed, and Gail will be happy to help us out while I nurse Maureen through the morning.

We will try to have one of those ‘easy days’ that we keep talking about.  If I prepare a leisurely lunch, followed by a  siesta  we have a fighting chance of Maureen being up for a couple of hours with Mark.  My guess is if I get her through the door she will go in for the full works, and opt for a few highlights.

Planning is always difficult when dementia is around.  Perhaps you can only ever give it a go and improvise as the day unfolds.  You will note I continue to struggle with ‘go with the flow’ – it just seems too passive for me.

 

Dementia: A Beautiful Moment

General

With so much going on here I nearly forgot a beautiful moment on Sunday evening.  We were about to go out for a short walk when Maureen spotted a neighbour across the road in her drive.  Maureen knew that Pat had been in hospital, and went across to see how she was.  Pat asked us into her place to continue the conversation that was taking place in the cold.

Once inside Pat’s bungalow we continued chatting, and Maureen offered to help Pat in a number of ways.  Knowing that Pat lived alone she said if ever she needed anything not to hesitate to ask.  Grasping that Pat was unsteady on her feet and had been advised that she should not go out by herself she said that Pat could walk with us whenever she fancied a stroll.

I had bumped into one of Pat’s relatives earlier in the week and sought an update on Pat’s condition.  In common with Maureen she has ‘memory issues’ and has been discouraged from going out by herself.  Pat looked puzzled when Maureen asked if she had enjoyed Christmas.  When we were leaving she had to redirect Maureen out of her bungalow, several times, before she could find her way out.  I can’t remember if she is aware that Maureen has dementia but she looked puzzled by Maureen’s behaviour: particularly her tendency to ask the same question several times.

What stands out for me in all this is the beautiful woman that dementia has not stolen completely from us.  Beneath her fear and confusion Maureen’s compassion still glows in the dark.  I miss Maureen’s warmth and compassion as it  not always on offer to that ‘strange man‘  who is often on duty in her ‘Care Home’.

 

 

Dementia: It’s The Environment Stupid!

General,

They are some relatively simple things that have been overlooked in the hurricane that strikes once the consequences of  diagnosis hit home .  Particularly when it is vascular dementia and you are discharged from the Memory Service and  left to seek care in the community.

Then it gets worse when you are at the receiving end of poor treatment from social services.  Our Care Plan has not been reviewed for over a year. No Carers’ assessment has been undertaken. Respite has been hard to come by in that time.  Things have only started to move in a positive direction since I made a real fuss about our shoddy treatment.  This has led to our social worker  being replaced with a Dementai Specialist.  I am now optimistic that we can put some of the dreadful events of the last year behind us and move forward.

It is easy when you are a Care Partner to sit back and blame others when the going gets rought.  I only have myself to blame for the events of yesterday morning.  Maureen joined me at the keyboard in the spare bedroom at 4.30 am absolutely terrified, as she had woken wondering if it was true that her daughter had died.  Once again I had got up early: not surprising as we had gone to bed at 7.30pm the night before.  Maureen had been tired and frightened and the only solution had been to join her in bed: knowing the consequence would be that I would be up early the next morning.

A couple of hours later confusion arose once again.  Maureen didn’t know who I was as I took her a cup of tea in bed at 8.30 am: she said I looked different.  In fact she then said if she’d known I was coming she would have sorted out some decent clothes so we could go out together.

It seems as if I am between a rock and a hard place in terms of supporting Maureen when she is tired.  Perhaps the following check list might help:

  1. Set bed time lights out by 10 pm.
  2. Siestas in the lounge.
  3. Not getting up until it is light.
  4. Work in spare bedroom if Maureen stays in bed.
  5. Make our bedroom less utilitarian.
  6. Be patient as all changes will take time to have an impact.

 

 

 

 

 

Dementia: Exercise May Help To Reverse Neurodegeneration

General

Maureen has always enjoyed walking: in fact she loves being outside in the fresh air.  Following stroke her G P advised her that: ‘she should keep walking’.  She took his advice so seriously that she often uses his words as one of her mantras.  Unfortunately, Maureen is so tired at the moment that she has only managed a couple of walks around the garden in the last few days.  She has also had periods of abject confusion, with fear being an additional component of her presentation.  I will have to monitor things very closely in the next day opr so and seek medical advice if things don’t improve soon.  The cold weather isn’t helping and Maureen often wants to stay under the duvet.

If the cold weather remains a deterrent to taking exercise then we are in trouble.  Recent research is suggesting that exercise can help the brain to regenerate:

‘Exercise may help reverse neurodegeneration in older adults, according to research published in the Journal of International Neuropsychological Society.

Carson Smith, PhD, an associate professor of kinesiology from the University of Maryland of Public Health and colleagues found that both healthy older adults and older adults with mild cognitive impairment (MCI) who improved their cardiorespiratory fitness through a moderate intensity exercise program increased the thickness of their brain’s cortex, the outer layer of the brain that typically atrophies with Alzheimer’s disease’.

“Exercise may help to reverse neurodegeneration and the trend of brain shrinkage that we see in those with MCI and Alzheimer’s,” said Dr. Smith. “Many people think it is too late to intervene with exercise once a person shows symptoms of memory loss, but our data suggest that exercise may have a benefit in this early stage of cognitive decline.”

If this cold spell continues it might be a goosd idea to consider seeking some Winter Sun.  All this talking about renewing passports need to result in action.  We don’t want to leave any stoned unturned as we use every possible strategy to maximise Maureen’s recovery from stroke.

Some postive news: I began work on reproducing dad’s notebook of the missons he flew on during the Second World War.  I think I have found a format that will make our copies of his notebook look authentic.  More work on this front is in hand and I am hoping to have some proofs to take to Coventry when I go down to see family on Saturday.

Dementia: ‘Something For The Weekend?’

General,

Maureen’s tiredness continues.   We had a rest at 4pm yesterday afternoon and she has remained in bed for the last 15 hours. I have woken my exhausted wife a couple of times for drinks, to make sure she doesn’t get dehydrated.

It is likely that her sore throat and runny nose are taking their toll.   This would also explain her increased levels of confusion.  Her behaviour yesterday on my return from a physio appointment, and a shopping mission, was untypical.  She mentioned that a lady had been in and given her some security advice, and that was why she had a collection of keys in her pocket.  Unusually, no tidying up had taken place in my absence, and it looked as if she had been completely thrown by being left to her own devices.

I think I need to stay close by for the next few days and see if I can help her to shift this cold virus with some dietary supplements. Fortunately, I have a little something to keep me busy for the weekend:   a small project that I have been procrastinating on for quite some time.

My dad was a ‘Tail End Charlie’ during the Second World War.  Some time ago Jill, one of my sisters, lent me his RAF logbook and  note book of  raids he went on.  I also have a number of photographs of dad when with his Lancaster Bomber Crew.   I am going to make a booklet of his life in the RAF.  This will mean we all have a memento of a very brave father: scanning and printing beckon.   His log book and personal diary could then be offered to an RAF Museum

This small project might help me to stop thinking about dementia almost every waking moment.  I need to find things to focus on that help me to become far more than a Care Partner.   There couldn’t be a better starting point than ‘Jack’s Joint’:  dad’s name was John but he was fondly known as Jack by members of his Crew.

 

Dementia: ‘Duvet Day’

General,

Maureen slept for most of yesterday.  I gathered early on, with her reluctance to get out of bed, that it could be another Duvet Days: one of those days following stroke that the brain is so tired that the owner has to rest.  Maureen eventually surfaced around noon and had me in stitches with her performance in the garden.

Seeking some fresh air she decided to stroll around the garden in her PJ trousers and a cardigan.  After a couple of circuits she suddenly burst out laughing with an anticipated comment from neighbours: ‘ I see she’s no better then.’

We had a late breakfast and an even later lunch.  Maureen busied herself in between ‘packing to go home’.  Fortunately, my rearrangements earlier in the day meant it was easier for her to pack, and much quicker for me to put things back.  I have now put her prized possessions in boxes and trays: so now she gets them out and I can put them back.  It is easier and quicker for both of us.  All I have to do is keep to Maureen’s mantra of everything in its place and all will be well I hope!

The amount Maureen is sleeping at the moment I am beginning to wonder if she has a viral infection?  She has been complaining of a sore mouth and throat for a few days.  I am hoping that the amount of garlic I put in the evening snack will kill off anything nasty: it will certainly keep the vampires at bay!

Maureen tidied or packed once again during the evening.  She felt hot after her exploits, and walked around the garden again under cover of darkness.  Following her stroll I called up YouTube on the television in an effort to keep her awake, and we sang along to a number of our old favourites.  I put our Songbird, Maeve on for a while and Maureen clearly enjoyed seeing her grandaughter hold forth.  I wondered if that would spark an interest in a trip to Coventry to seek Maeve but unfortunately it didn’t.

At Maureen’s behest Chloe, our carer, is cancelled today but she has probably forgotten her concerns about ‘all these people in the house’ now.  I fully expect her to ask if Chloe is coming today when she wakes this morning – she did yesterday.  Perhaps, I’ve got to learn to listen and nod rather than act on Maureen’s impulses.  I may well regret that I am a ‘lone wolf’ again today: you win some, you lose some.

Dementia: Tiredness Takes Its Toll

General,

Maureen had a really good day yesterday until she tired.  She was up bright and early: so breakfast was over before Gail our carer arrived.  We had been chatting about our care needs as we ate, and I left Maureen to carry on the conversation with Gail when she arrived.

Gail fully understood Maureen’s point that ‘she wanted her life back’.  She explained very clearly that if others were doing the household tasks there would be little for her to do.  As Gail said ‘it is your home and life and it’s all up to you’.  Maureen was so careful to explain to Gail that it wasn’t anything personal, and she wanted to regain her independence.  We explained that as our social worker was coming next week we would continue these discussions on Tuesday.

Once we had explained our thinking to Gail we let her go early so we could get on with our plans.  This gave us time to pop into Cleethorpes so Maureen could choose some new spectacles.  It didn’t take her very long to choose what was needed with a minimal support from me and an assistant.

After the opticians I headed in the direction of Maureen’s hairdressers.  Once again Maureen confidently sorted out an appointment for next week when Mark would be back from holiday.  Following calling in at a supermarket we made our way home for lunch.

Maureen busied herself tidying up in the bedroom while I prepared lunch.  Following one of my Italian creations we decided to have a siesta.  Unfortunately, the window cleaner interrupted our plans, and neither of us had the rest that we needed.  This led to a period of confusion for Maureen as she thought it was time to visit a relative: something we had planned for Thursday.  As she couldn’t find her handbag the trip was postponed until another day.  It is interesting to note that until this point in the day Maureen’s presentation had been extremely good.  Unfortunately, the missing handbag sent her into a loop about ‘things going missing’.

We had tea a little earlier than normal as Maureen said she was hungry.  Following tea  I made a mistake by leaving Maureen to tidy up the kitchen while I typed away upstairs.  This led to a period of distress and confusion.  I heard her crying that she wanted to go to bed but didn’t know how to secure the house.  As I helped her with her night-time routine at 7pm she explained she wanted the bed to herself as she preferred to sleep alone.

I ventured into ‘Maureen’s bedroom’ about 6 am this morning.  She had no recollection of asking me to sleep in the spare room so I went along with her thoughts that I had slept beside her.  As always she has been thinking about a number of things as she lay there in bed.  This has opened up a number of possibilities for activity today.  With luck Maureen will send a couple of post cards to family and we might even venture to see her Aunty Ethel.

One thing for sure the window cleaner won’t interrupt out afternoon nap today.  It will be interesting to see how Maureen copes if we have our siesta this afternoon.

 

Dementia: Two Good Women

General,

Yesterday proved to be a difficult day.  Maureen got up much earlier than normal, and struggled for most of the day.  At times it was obvious she wasn’t sure who I was, and I was at a loss to know the best way to respond to her presentation.

She dozed for part of the morning and had another nap after lunch.  When she woke she tried to get outside via the patio door and then wondered where her car had gone.  Once she had seen that the car was still on the drive she retired to bed and closed the bedroom door .

I managed to have brief chat with Mel my Admiral Nurse during the afternoon.  I needed advice about the stash of things that Maureen had packed to go home.  My hunch about putting things back was supported and I duly unpacked.  As our conversation was interrupted by Maureen waking Mel left me a message later in the day encouraging me to take more rest

I had also had an EMail from Sue our Social worker earlier in the day in response to some concerns.   Sue’s response was very informative and supportive.  She also advised me to take more rest.

When I read of colleagues experience on Talking Point, the Alzheimer’s Society Web Site, I realise that I am very fortunate with the level of support I receive as a Care Partner.  Some poor souls have no access to an Admiral Nurse, and have very limited contact with social services.  This is just another occasion when I count my blessings that we live in an area where the services are well set up to help Maureen and I as we continue on our journey.

Footnote:  I intend to heed the advice of Mel and Sue to take more rest.  Today I have managed to stay in bed beyong 8 am: something I need to replicate on a daily basis.  I also think that one blog a day should suffice for any Care Partner: even me!

 

 

 

Dementia: Sweet Dreams

General

 

Maureen woke up early this morning and told me she had been dreaming about her Auntie Annie and Uncle Eric.  Apparently, they were deaf and dumb, and Maureen has very fond memories of a very jovial couple.  She reaclls when she first went to the High School in Nottingham that she used to walk to their house for lunch.  As she recalled her memories of them and their children I listened and pushed the conversation in a certain direction.

I hope that I have shown my optimism for visiting old haunts in Nottingham.  If my ‘cunning plan’ is successful it opens up all sorts of doors for further cognitive stimulation.  Maureen is keem to learn more about why people are born deaf and dumb.  She might also want to try her hand ay signing again.  With a bit of luck I will see if I can get her to map out her journeys to school and her Aunty’s house.  So lots of possibilities to cajole her to make another trip to Nottingham.  She has forgotten that we were in her home city a couple of months ago but that doesn’t matter.

Nottingham is also a place that holds dear memories for me.  I would like to spend some time in the area, and revisit a University I attended over 30 years ago.  The last time we were that way I couldn’t even locate the building in which I attended lectures!   The other advantage is that Coventry is only an hour or so away and if I could get Maureen that far it would be a real achievement.

EmmyLou Harris has something to say on this subject: Sweet Dreams

Footnote: All of this could be wishful thinking as Maureen seems really quiet this morning.  She may well have forgotten her dream and my aspirations could turn out to be Pie in the Sky!