Category Archives: General

Demantia: Decadence Sets In!

After a Friday night with a difference we have decided decadence is the only way forward.  We’ve just been listening to UB 40 in bed as we ate our porridge at 1.45 in the afternoon.  

You might be able to guess what Ali and Chrissie were singing.   Well we’ve got our excuses for staying in bed late after last night.

Maureen is still very pensive and keeps thinking about why she is having to stay in this ‘Care Home’.  She feels she is going to be kept here until the money runs out.  No matter what I say Maureen does not believe this is her home.  In her opinion she is here because her family don’t want her.

A post card arrived a short while ago from her son who has called in at Rome on a cruise.  She amazed me that she could read most of it without her glasses. I am hoping that her eye test on Monday will lead to new spectacles to replace those that have been missing for a couple of weeks.  This might mean that we can resume crosswords and other activities where she will need her glasses.

Who knows what the rest of the day will bring?  The sun is shining so I am hoping a short walk will blow away the cobwebs for both of us.

Dementia: An Amazing Conversation

In the time we have been together Maureen and I have many illuminating conversations where she has shared her intellect and compassion.   We were talking for a considerable period of time very early this morning and I could only describe our conversation as AMAZING.The Brain's Way of Healing : Remarkable Recoveries and Discoveries from the Frontiers of Neuroplasticity - Norman Doidge

The amazing thing was that Maureen demonstrated her intellect remains intact and she is beginning to use it to correct her faltering memory.   She is also beginning to understand that her brain is continuing to recover from stroke.

One of the most exciting points of her converstaion was when she corrected an element of her confusion.  She began to talk to me about ‘her husband Paul’ and then she laughed and corrected herself and said: ‘I mean you of course’.  I have heard her correct herself in retrospect before but never in the same breath.  The other thing that I found really exciting is her grasp of how tiredness means that she is sometimes not a full shilling.  We nearly fell out of bed laughing that when she is tired she is only ten old pennies.

Am I getting carried away: is all of this hopeful optimism trying to prove the pundits wrong?  The simple answer to that is I don’t think so and it is better to wake up with a smile on my face than a frown.    It is time for a detailed look at how the brain can heal itself and I hope to be reading what Norman Doidge has to say as soon as possible.

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: A Load of Barney

There is a simple way to lift Maureen when she is looking a bit sorry for herself.  All I have to do is put Barney McKenna on YouTube singing: I Wish I Had Someone To Love Me.  If you saw her in action  you would see what I mean.

As soon as the opening music comes on she is transformed.  Once she hears Barney’s voice her face lights up and she joins in; loving every minute of the song.

The interesting thing is that her recognition of Barney’s magic is from her short-term memory.  Until a couple of weeks ago she had never heard of Barney McKenna or his music.  So the stroke hasn’t completely destroyed her short-term memory or ability to recall.  Now there’s an interesting thought!

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.

Dementia: Still A Full Shilling!

Maureen proved the doubters wrong again yesterday.   She proved that she is ‘a full shilling’: something she suspects some of the medics and professionals doubt.  Her reaction to my concerns about her elevated blood pressure was spot on.

I thought she had overlooked the concern about her elevated blood pressure.    Our chemist had checked it twice on Tuesday as the first reading was 190/80.   The second reading was slighly lower at 180/90.  Maureen seemed to take the news in her stride, and  didn’t show any concern at the time.  However,just to be on the safe side  I contacted our G P and made an appointment for today.

During yesterday afternoon Maureen mentioned that the ‘lady around the corner’ had suggested she return for further monitoring of her blood pressure.  So we popped her back to the chemist and this time it was absolutely fine.

It is possible that Maureen’s poor short term memory isolated her from concern about the high reading on Tuesday. I somehow doubt this, and I think she was on the ball not to panick.  She may well have remembered that blood pressure can vary from day to day..  It is one of those occasions when I will never know if she just played it a bit better than her panicking husband

This is probably yet another occasion when Maureen has proved she is ‘a full shilling’.  When she has energy she remains a highly intelligent woman.  It’s only when she is tired that any diagnosis of dementia would seem valid.  All of this brings to mind a message that my statistics teacher used to drum into his students: ‘statistics don’t prove anything they only suggest’.  I think the same could be said about Memory Tests!

Dementia: The ‘Gale Force’ Approach to Caring

Yesterday I posted a suggested Code of Conduct for guiding our approach to Maureen.  Later in the day I realised there was something else that we needed to sign up to.  We need to ensure that our communication with Maureen is always  supportive to her reality.

As I watched our carer  in action yesterday I saw what was needed to go alongside a Code of Conduct.   All Gale’s communication with Maureen was compassionate and reflected her reality.  I could not fault her performance and I have shared aspects of it below.  I have tried to summarise the priciples behind how Gale interacts with Maureen as something that we all need to sign up to.

Maureen was still sorting her underwear out when Gale arrived, so I managed to update her on recent developments.  I then suggested that she popped upstairs to see if Maureen needed any help.  She asked Maureen if she  wanted anything adding to the shopping list that I had drawn up.  Maureen said she was quite happy to leave things to me, and sent Gale on her way to Lidl.

Gale returned with our food shop as I was about to leave for a hospital appointment.  As I was on the door step I heard her ask Maureen if she wanted to help her unpack the purchases.  Then she played her trump card by saying: ‘Shall I pop off after we have unpacked or shall we have a cup of coffee and a natter?’ Maureen happily accepted the latter.

When I returned from my physio appointment they were still chatting together in the lounge.  With the banter that came my way I knew that Gale had worked well – yet again.  She has the remarkable ability to work out what Maureen wants on the day and then respond appropriately.

After Gale had gone Maureen said how much she had enjoyed chatting to Gale.  When you think about how Gale approaches her work it is not surprising that Maureen enjoys her company.  We all need to do it the ‘Gale way’ and sign up to the following:

  • Focus on listening not talking
  • Give Maureen lots of space to do her own thing
  • Never give Maureen any bad news or negative information
  • Never contradict Maureen’s reality:  particularly over time or day
  • Let Maureen take the rest she feels she needs
  • See Maureen as a person: not someone with dementia
  • Follow the principles of’Compassionate Communication: including telling Love Lies

 

Dementia: A Code of Conduct

It is going to take Sue our social worker a while to review our Care Plan.  In the mean we all learn to sing from the same ‘hymn sheet’ and this Article from the latest edition of Alz Live is a helpful starting point.  I am therefore going to circulate this extract to family, friends and carers an interim Code of Conduct that we all need to sign up to:

‘Making the Most of Your Visit

by TARA HEATH

Not being known by someone who is the centre of your world.

Not being able to recognize the person you once idolized; seeing a completely new and strange person replace someone who was once so familiar to you – coping with the changes that the effects of Alzheimer’s can have on a loved one can be quite challenging.

Not only is it hard to accept the changes that you see happening before your very eyes, it is hard to understand how to deal with those changes. However, accept and understand you must, because at the end of the day, that person is still your grandparent, your parent, a dear friend, or someone else who you hold near and dear to your heart.

Part of the battle of successfully coping is understanding what to expect. You want to make the most of your time with this person, but feeling overwhelmed and unable to process the changed person that you see before you is natural.

In order to make the most of your visit with a loved one with Alzheimer’s, prepare yourself so that you can enjoy your time together as much as possible.

Be Knowledgeable

You have the image of your jovial grandfather in mind, but upon visiting him, you are startled to find how much he has changed. In order to avoid feeling overwhelmed, be knowledgeable about the changes that you will likely experience. He or she may not know who you are, may become easily upset, or may think you are someone else. Knowing to expect this type of experience can allow you to respond in a positive way, ensuring your visit is a successful one.

Offer a Greeting

If your mother has Alzheimer’s, you know that her not knowing or recognizing you is not abnormal. By offering a warm greeting and introducing yourself, you offer her the chance to place who you are and set the stage for a successful meeting. Those with Alzheimer’s tend to crave physical touch, so offer a warm hug or hold their hand as you sit together.

Be Courteous

Though your loved one may be forgetful and may even act childish in some ways, always treat him with respect. Never belittle or talk down to him. He is a person who has lived a full life and is battling a very difficult disease. Show your respect and be courteous – although they may not be able to show their appreciation, it’s very important.

Don’t Overwhelm

Sharing too much at one time with your loved one is often overwhelming for them. Pick and choose what you want to say, or talk about, and pay attention to their physical cues. When you notice them becoming tired or irritable, it’s okay to simply sit quietly.

Show Your Love and Support

Even if your loved one never gains a sense of who you are during your entire visit, show her your love and support anyway. Your loved one can sense your emotions, and those emotions will greatly impact her long after you leave. In fact, she may associate those emotions with you the next time you visit, so be sure to leave things on a calm and positive note.

Don’t Get Upset

Naturally, the changes Alzheimer’s brings to your loved one are difficult and hard to deal with. However, don’t let your frustrations get the best of you! This will make the visit more difficult for everyone, perhaps leading to more discouraging visits in the future.

Preparing yourself, knowing what to expect, and exhibiting the right attitude toward your loved one greatly impact the success of your visit, making your time together memorable and meaningful.

Tara Heath is a freelance writer in Southern California. As her grandma currently battles Alzheimer’s, she finds these tips practical and helpful for visiting her. She contributes health content to the Presidio Home Care blog.’

Dementia: Chain Reaction

Maureen didn’t feel up to having her hair done yesterday.  She thought she had spent too long tidying up the kitchen after breakfast and was too tired to face an afternoon in the hairdresser’s salon.  As we were eating a late lunch her Aunty arrived and that seemed to lift her.    She then spent an hour chatting and listening to Clarice.  We then popped out with for a short while and went round Clarice’s house for a cup of tea.

Our friendly chemists is across the road from Clarice’s house so I encouraged Mauren to have her blood pressure checked.  The top figure was much higher than it has been for quite some time, so further monitoring will be necessary over the next few days.  On return home Maureen’s son phoned to confirm his visit at the weekend.  Following his call confusion surfaced about; when he was coming, and who would be in the visiting party.

Today’s experience has set me wondering about why Maureen’s presentation can change so dramatically.  As an neo buddhist I am wedded to the law of cause an effect.  Therefore I find it difficult to accept that dementia has random ramifications.  I would speculate that Maureen’s presentation today has been the result of a set of events.  The downward spiral began on Monday when Maureen resented having a ‘baby sitting service’.   Tiredness has had a significant impact, yet again, on Maureen presentation: yesterday was far too busy.

I hope to be able to give Maureen some space over the next couple of days.  It’s time to stay close by and act as a gatekeeper and make sure other people don’t wear Maureen out.  That means making sure that carers have plenty to do and leave Maureen to rest.   I know I will get a day off on Sunday when I go to London to see my daughters.  My post a little later on this morning is an attempt to ensure Maureen has a supportvie time while I’m away.

Best leave it to Diana Ross to close this post: Chain Reaction.

Dementia: One A Day To Keep Exhaustion At Bay

It is possible that I have been encouraging Maureen to do so much that exhaustion is taking over.  So the simple solution is to back off for a while, and see how things go on the energy front.

Maureen has a hairdressing appointment this afternoon.  It has taken a fair amount of friendly persuasion to encourage her to arrange for Mark to work his magic.  This morning she is talking about going for the full works – restyling and colour. That could mean she could be in the chair for a couple of hours or so.  This will be an exhausting experience, as she pulls out all the stops to convince Mark her recovery from stroke is complete.  After such a performanc she is likley to  sleep for the remainder of the afternoon, and evening.

I also need to accept that when we have carer sits that is enough activity for one day.  Again, she will be on full throttle, determined to show her carers’ that she: ‘lost her memory once’.  I  have no problem in accepting her reality: it is an optimistic approach and shows Maureen’s determination to thrive in the face of adversity.

Let’s hope one a day keeps exhaustion at bay!