Category Archives: General

Dementia: ‘Practice Makes Perfect’

General

Away days like yesterday are going to be a common feature of my life from now on.  However, there are certain things to be sorted out before I set out again in a couple of weeks-time:

  • An up to date Care Plan
  • Guidelines for carers and visitors
  • Basic information about our household

It is really important to avoid a repeat of yesterday.  Maureen needs to continue with her normal routines in my absence.  She needs a reasonable mix of stimulation and rest.  Her food needs to be of a good nutritional standard.  Medication needs to be offered and taken.

It is inevitable that there would be teething problems as we begin this new stage of our journey.  We all need to move on and as they say: ‘Practice Makes Perfect’.

 

 

Dementia: In The Dog House Again

General

I began writing this blog at 10.30 last night to start looking back on my away day in Coventry.  It had been a tiring day and I haven’t really pleased  my mum or my wife.

My journey began at 7.10am yesterday morning, and I returned home at 9.15pm.  It’s a round trip of 230 miles from Cleethorpes to Coventry and I travelled by travelled by coach, and local bus.  We made good time, and I was sitting beside mum in her Care Home by 11.40 am.

Her repetitive questioning about: ‘had I come in the car’ was a constant theme of the hour we spent together.  I soon gathered that she was angling to be taken out for a ride in the surrounding countryside.  My sisters report that mum often switches off, and goes to sleep when a short drive is not on the cards.

My idea of using music went well, and we sang along to some Festive tunes from my phone.  Mum tapped her feet and really enjoyed our little sing along.  She was reluctant to move from ‘her chair’ and that caused upset for one resident that a ‘man was in the house’.

As short as my visit was it gave mum a break from watching random TV that provides a meaningless backdrop to her life.  Staff seemed to be busy meeting the individual needs of residents, and gazing at the screen seemed to be the option for mum: little surprise she was dozing when I arrived.

I had a lovely lunch with several family members at a local pub.  Service was slow and that meant I didn’t manage to get to see my brother as his Nursing Home is the other side of the city.

I was not well received on my return home.  Maureen was confused by the events of the day, and had no recollection that her son has been here.  The cold shoulder was applied in a blatant fashion, and Maureen was reluctant to go to bed insisting on sleeping on the sofa.  I managed to persuade her upstairs at 11.30 pm but she didn’t want me in the same bed and I took my place in the Dog House – the spare bedroom.  I managed to join her in the marital bed  early in the morning when I could hear her moving next door, and I feigned a return from a visit to the bathroom.

It is fully understandable that I am in the Dog House.  My mum loves to go for a ride in the car: I didn’t take her.  Maureen had been left with strangers all day: I had deserted her and her normal routines had been disrupted.  What else can I expect when dementia means that my mum and wife now focus exclusively on their own needs?

 

 

 

 

 

 

 

 

 

Dementia: Tormented by Christmas Past and Fear of Christmas Future

General,

One of the things I’m continually trying to do is grasp what it is like for Maureen living with dementia.  I feel the: anger, frustration, fear, and anguish on a daily basis.  Maureen still says: ‘she lost her memory once’, and she has probably forgotten her diagnosis of vascular dementia.  Therefore, she doesn’t talk  about her fears and concerns.  So I try to understand what it might be like for her by reading accounts of those who write about their condition, and  Norrms put it like this:

‘TORMENTED
BY
CHRISTMAS PAST
AND FEAR OF
CHRISTMAS FUTURE

This time of year is such a confusing time of year, not just for myself, living with dementia, but also for others and their carer`s and loved ones. I try to look back and try to remember what’s happened this year, as I start to look into the mirror and take a cold hard look at myself, and this awful illness, the two are now linked forever unfortunately. I see staring back, a different man from 12 months ago, ( I think, it’s at this point I look at old photo`s ) Is it only me that can see that blankness creeping into my eyes, that disassociation draining from my pupils, or is that just my Illness? Is it ME looking back at ME? Or is it Lewy Body’s, smirking behind my smile, laughing at me, tormenting me, taunting me of what’s yet to come?

Thoughts come into my mind, happy thoughts, of things achieved, things completed and of things yet to come, until that is, Lewy Body`s walks into the same room in my mind and reminds me of the struggle it has been, the sleepless nights, The hallucinations, The Night terrors and the Horrors of What Lewy Body`s imposes on my family and I on a daily Basis.

It’s at this point the tears start to fall and the feeling of hopelessness envelopes my whole body and mind. As they subside and I wipe away the tears, thoughts turn to next year, well it’s only a couple of weeks away. I always like to say, one minute I was watching Space 1999 and the next I was transported into the year 2015, with not that much knowledge of what happened in-between!! And so to next year……………….

2016 WOW!! Just saying that sounds so very strange to me, dates, times and months don’t come that easy to me these days, but as we all know, time and tide waits for no man / woman, unfortunately, neither does Dementia. If I am very honest, I am dreading the 31st March!! Not the 19th as that’s WRAD World Rocks against dementia day, but what about after that? What about when I retire and try to fill my days with other things except the disease that has ruled my life for the last eight years and will end my life if no cure is found?? How do I fill that gap? Most worrying?

Yes of course I am looking forward to spending my time with my “Angel” Elaine, and yes I am so looking forward to spending more time fishing and gardening, with my kids and going on holiday, but at the end of the day, Lewy Body`s will always be there, chip chip chipping away at my family and I. So as you can see, the New Year can be such a confusing time for people like me and their families. So many family members out there must think exactly the same, have the same fears, the same worries, and so many out there with this disease must also think this, even if they cannot speak this.

All that comes to mind at the moment is
DAY BY DAY is all we can hope for, hope this helps

Norrms Mc Namara Diagnosed with dementia 8 years ago aged 50′

Dementia: Making The Most Of Monday

General

Today’s blog is much earlier than normal as I will be leaving for Coventry shortly.

There are several opportunities today that are too good to miss, both on the home front and in Coventry.  The home banker is that with Ian, Maureen’s son, here she will be more amenable on several fronts.

Maureen’s resistance to having a shower and her hair washed is likely to melt away, as she will want to look her best for her son.  It is also possible that her enthusiasm for trimming up for Christmas will return with her lad by her side.  Furthermore, the foot that has been too cold to go outside the door is likely to warm up as soon as she sees his face.  There is no point in getting irritated about this change of demeanour because dementia creates such a transformation in behaviour as outlined in this article.

Coventry offers me an opportunity to consider the life in a Residential Home.  Once my dad died my mum simply couldn’t cope home alone.  Her choice of a small Nursing Home for ladies is fully understandable, as is the loss of her mobility.  Chair bound for most of the day it isn’t surprising she is needing a frame to get around safely.  The other issue for her is that several of her fellow inmates have developed challenging behaviour and her environment is far from peaceful: she asked my sister to: ‘get me out of here’ on a recent visit.  However, mum’s residence is serene compared to what goes on a daily basis in John’s Nursing Home.

John ended up on Continuing Health Care after an unfortunate incident when he had been left at a Respite Centre.  His challenging behaviour led to a Section and a ‘chemical cosh’ so that staff could gain his compliance.  It is probable that John would have been in his own home for much longer if his wife had been given the support she needed.  Desperate for respite from his challenging behaviour she left him in unfamiliar surroundings and the rest is history.

Seeing my mum and brother in their Homes always makes me pensive.   I don’t find their surroundings an attractive prospect for either of us.  If at all possible we would want to remain together in our own home until death do us part.  That may well involve having substantial support in our current home or moving to some sort of sheltered living accommodation.

 

 

 

 

Dementia: ‘Baby Come Back’

General

Great news I did it: brought Maureen back into the here and now with music. I played Ali Campbells’s concert at the Royal Albert Hall and Pato Banton did the trick with Baby Come Back  .I think it brought back those wonderful memories of concerts at the National Exhibition Centre and Institute in Birmingham.

I had already plied her with Red Red Wine before Ali got to that number.  It’s not surprising that she has ben ‘time travelling’ back to the past when I think of all the old stuff we have been playing lately.  Ali and Pato rule here along with Oliver Sachs: never mind Elaine Paige.

Dementia: In Safe Hands

General,

It’s reassuring that Maureen will be with carers that she knows when I’m away tomorrow. 

Once again I need to praise Sue our social worker who is  aware of Maureen’s vulnerable state at the moment, and has requested that we have familiar faces on the scene.  This has meant that Chloe’s idea about writing a Care Plan for her colleagues is not needed tomorrow.

I chatted to Chloe on Friday about the guidance she would give her colleagues and it went something like this:

  • Introduce yourself as a friend of Chloe’s
  • Say you have just popped in to give a helping hand
  • Never say you are here so Paul can go out
  • Give Maureen plenty of space to do her own thing
  • Never try to force Maureen to do anything
  • Do not try to make Maureen have a shower or wash her hair
  • Take into account that Maureen has a 50% peripheral vision loss
  • Go out for a walk with Maureen if she is keen to take exercise
  • Understand that Maureen is still grieving for her daughter who died 3 years ago
  • Understand that Maureen may confuse Paul with her previous husband Eddie

I’m sure Chloe will add to her Handy Hints to colleagues.  It also seems likely that the idea will catch on and the Agency will adopt it as standard practice.  How fortunate we are to have such a committed carer as Chloe in our midst.

 

Dementia:’Houston We Have A Problem’

General, Uncategorized,

There is no doubt it: ‘we do have a problem at the moment’, and the worrying thing is it may be more than a temporary one. It’s becoming abundantly clear that the times when Maureen is unclear who I am are becoming more frequent.  Unfortunately, that problem is going to take on an even greater magnitude tomorrow when I am on a day trip to Coventry. Therefore I need to hurriedly put one or two things in place to attempt to reduce the potential for further distress.

The real problem arrives when Maureen thinks I am her previous husband.  So I am going to concentrate today on putting even more things around that are ours, and remind her of the ‘good old days’.  Perhaps looking at our wedding photos, and sorting out one or two albums of old haunts might help.  I can also talk about and put on music that reminds her of the happy times we have spent together.  However, I’m not quite sure what I can do about her son’s visit while I’m away.

In many ways it is unfortunate that Ian is coming tomorrow.  Maureen often becomes more confused than ever after his visits: unsure who her husband is.  After my holiday in Portugal last year she became convinced that his dad was returning, rather than me.  As he stood with her at the railway station she looked a pitiful sight, almost unrecognisable, until she saw it was me coming off the platform.  On another occasion she summoned the police because she said ‘there was a stranger in the house’ – it was me!

The Clinical Psychologist from the Stroke Team warned me to be very careful once Maureen began to confuse me with her previous husband.  Being aware of the abusive nature of Maureen’s previous marriage she urged me to be very cautious about my behaviour.  Therefore, I’m now being very careful about when I make physical contact with Maureen.  How sad that in the present circumstances I have to check who Maureen thinks I am before can give her reassuring hug:  if I get it wrong all I will do is cause further upset.

Dementia: ‘Please Don’t Leave Me Alone’

General, ,

I have just returned from a short trip to the shops to find Maureen very distressed.  When I found her in the bedroom she said: ‘I don’t know what I’m doing’.  She went on to tell me that she became very frightened as she: ‘felt useless that she couldn’t do anything to help, and I was doing all this running around’.  I have posted below an extract from an article by  Bob DeMarco, that appeared in the Alzheimer’s Reading Room, to remind me why I can’t leave Maureen alone at the moment:

‘The simple facts are that at a certain point in the development of dementia, a person really cannot be left alone.

The easiest way to understand this is that dementia patients do not “cope” well when left alone.

You could ask yourself this question. If the person who is left alone is angry when you return, how do you think they might have been feeling while you were gone?

Do they feel,

Confused? Afraid? Abandoned?

Alzheimer’s patients are very fragile. As the disease develops they don’t have any real concept of time. To a person who is deeply forgetful 30 minutes might seem like an entire day.

For example, I might go to the store for 30 minutes and leave Dotty alone at home. She would be angry when I returned.

Later that night she might say to my sister Joanne, I don’t know where he goes, he goes out all day long. She said this even though I was only gone for 30 minutes I and I went to the store.

Clearly she had no understanding or any memory of how long I was gone, and why I was gone.

Dotty might also say, I don’t know what he is up to. This was code for Dotty thinking or believing I was going to put her in a “home”.

Like any feelings or emotions in any of us, if you let these type of thoughts build up over time it is likely that you are going to “lose” the dementia patient.

When I say “lose” what I really mean is lose their trust.

If they don’t trust, or if they stop trusting you, you are really in for some very miserable times. If an Alzheimer’s patient does not trust you they will become angry, irritable, challenging, and hard to deal with.

When this happens you both suffer the burden.

The person who is deeply forget becomes confused, then angry, and then they “act out”. You on the other hand get left with an upset stomach (agita), and a very sore heart.

That is the way it felt to me.

Some caregivers complain that they can’t get a minutes peace. That the person who is deeply forgetful follows them around, or constantly calls out for them when they cannot see them. Dotty did this all the time.

Let’s reverse field. Instead of “venting” and complaining about the behavior of a person that is deeply forgetful, let’s instead ask ourselves, why do they follow us around, why do they call out when they cannot see us?

The simplest answer to this question is because we are their lifeline.

We are the person they trust (maybe the only person). We are the person that keeps them attached to the real world.

Like it or not, you become the one person in the world that a person who is deeply forgetful can rely on and trust. You are the only person that can keep them from becoming confused, angry, and just downright scared.

After a certain point in time a person who is deeply forgetful gets scared when left alone. This in turns leads to all kinds of negative behaviors’.

Dementia: Woken By Maureen Screaming In The Night Again

General,

It’s 4 am in the morning and I have decided that blogging may help me to sort a few things out.

There is a difference today as I know I haven’t woken myself up to blog.  Once again I have been woken up by Maureen screaming: yelling out in fear that there is a stranger around.  This time she was yelling to her dad that someone was walking down the passage.  She didn’t see it as a dream as she asked me if I had heard their footsteps.  It seems likely that there is far more to her current presentation than the infection that surfaced last week

In the last week or so Maureen’s levels of confusion have concerned those who see her on a regular basis.  Yesterday, Chloe one of our regular carers commented on how confused Maureen was at the moment.  It’s no longer just a question of Maureen asking Chloe the same questions time after time. There is far more to concern us than that.  Yesterday, Maureen became completely confused on my whereabouts on several occasions.  Unfortunately, her present levels of confusion are not being eased by the antibiotics, and no further treatment is required for her original infection.

I managed to have brief chat with Yvonna our chemist yesterday, and there are a number of possible explanations for Maureen’s increased level of confusion.  It is possible it is evidence of further decline caused by dementia.  On the other hand it could be explained by viral, or bacterial infections, or viruses.  I’m hoping that it is something within the realms of the latter explanation.  Only time will tell and a good diet along with the right amount of exercise and rest, are just what the doctor or chemist ordered.

I hope to catch up on some sleep later in the day.   Unless I can get more sleep there is little hope of my leg or shoulder pain being solved.  There is a price to be paid for concentrating on Maureen’s needs, and dementia may well mean that they are insatiable.  It is time to tough it out and prioritise my own needs.  If I don’t carer burn out is on the horizon, and that won’t help either of us.

My trip to Coventry on Monday offers some respite when I have a day to myself: albeit one with demands of its own; a tiring journey with an emotionally draining agenda.   Seeing your mum with vascular dementia and brother with Alzheimer’s is hardly a picnic.  However, the downward coach trip should offer some valuable thinking time: I need to have some sort of plan to break out of this Catch 22 situation I’m now in.  In a nutshell:  I can’t carry on like this!

 

Dementia: Talking Therapies Needed

General,

I have decided to change my plans on my second Blog of the day.   Rather than dealing with Christmas I need to focus on an issue that Maureen has to deal with day after day: low mood and grief.  She woke up this morning, once again, confused and grief stricken; even depressed.   Her thoughts had taken her into negative territory and by the time I had tea beside her in bed her mood was definitely low.

Some time ago I mentioned that the Memory Service had offered to keep her on their books if she admitted to low mood.  A Care Co-ordinator said she could understand if her mood was low, and if it was they could help her.  As the only reason they could keep Maureen on their books was to monitor medication, I think it is fairly safe to say that antidepressants were around the corner.  I am bemused here because Irving Kirsch was only across the Humber Bridge at Hull University when he proved that antidepressants were no better than a sugar coated pill for mild to moderate depression.  He used Freedom of Information to prove that drug companies had not disclosed details of tests that did not cast their medication in a positive light.

When you consider what Maureen has been through lately why would you prescribe tablets that are likely to give her side effects?   Her own G P is reluctant to prescribe medication unless it is essential because he knows that her body does not react well to tablets.  Why on earth is talking therapy not part of NICE Guidelines when someone is diagnosed with dementia?  Once again I’m back one of my hobby horse that we need to move dementia out of Mental Health: it is not an affective disorder it is brain injury.  This might just lead to an acceptance that talking about the potential of the condition to lower your mood might be helpful.  Wasting time and money on tablets that don’t work is crazy: talking therapies are needed!