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’

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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!

Dementia: Time For Caution

General

Time is not on my side to encourage Maureen to make it clear the amount of care she feels is needed when I go to Coventry on Monday.  It is possible that she would say that she doesn’t need carers with her until her son arrives and after he goes.  It’s one of those occasions where a cautious decision has been made to ensure she has some form of company while I am away from home.

Yesterday morning Maureen couldn’t seem to get it together at all.  I had to cajole her to eat breakfast in bed with some musical accompaniment from YouTube.  Then she struggled for ages trying to find some comfortable clothing and eventually went back to bed exhausted by her struggles.  It is so distressing to watch on one of these days and they come along quite often.

Maureen’s tiredness continued into the afternoon and evening.  It was one of those days when she seemed lost.  Elaine Paige gave her some respite and she sang along to songs from several musicals.  Towards the end of the evening Maureen spent a long time examining her new glasses.  She was convinced that neither pair were hers: they were the wrong colour; prescription or they smelled of perfume.  On reflection it just seemed one of those days when there was little I could do to ease her distress.  Hang on a minute I’ve just remembered something else.

At several times during the day Maureen was looking for missing people particularly children.  In the afternoon she checked: ‘if there were any drinks for the kids’.  Later on she was wondering: ‘where the others had all gone’.  During the evening she commented that: ‘it wasn’t the same any more at Christmas’.   Following her comments I suggested that we ‘trim up for Christmas’ but once gain she wanted to leave it until tomorrow.

An ongoing contentious issue arose as we were going to bed.  As Maureen struggled to find her toothpaste I said she could get a new tube tomorrow; to which she replied: ‘how can I haven’t any money’.  It wasn’t the time to go into this issue but now I have found one of her missing handbags it might be opportune to fill up her purse a little.  However, I don’t think we will ever make any real headway on this issue as Maureen anticipates that her money will continue to be taken out of her control and thieves will keep taking her clothes.  If only one of them would return her missing boots I could call off the search party.  On the money front to put more than small change in her purse is courting disaster.  Based on previous behaviour it will either go missing or ironically be returned to me for safe keeping.

I am not sure of the best approach to today.  It would be lovely if I could do something to solve the clothes issue but I don’t want to get caught up in the mayhem of Christmas shopping, for what could well be another fruitless journey.

Maureen has just woken up and I have taken her a cup of tea.  She has just asked me: ‘Has Paul my husband gone away?’  Following my reassurance that I am with her she has gone on to ask if her mum and dad are still alive.  We have talked about several things and agreed that I will try to solve the underwear crisis with an early morning trip to Tesco.  Once again I have not helped this early morning confusion by getting up early: I have to solve this early morning wakening.

I think I need to stay close by this morning and see what we can do together in preparation for what is going to be a Christmas with a difference; more on that later.

 

Dementia: Helpful Tips For Paid Carers

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Sue our social worker has sent me a draft Support Plan.  She has done really well in the short time she has been working with us to gain a pretty clear understanding of us and our lives.  I am going to suggest that we now produce a summary document that new carers can be given before they visit here for the first time.  I need to include our regular carers in this exercise, so we end up with some Helpful Tips for their colleagues.

There are two things that would help when there are ‘new kids are on the block’. Firstly, that they arrive at our door knowing something about us. Secondly, that they don’t need to spend the first part of their call ploughing through loads of paperwork.

I am hoping to have something in place as soon as possible, in case our regular carers are not available on Monday when I go to Coventry.    It is unlikely that Maureen will accompany on my day trip, and it would be helpful for any newcomers to have some Helpful Tips to help them provide sensitive support.

Dementia: Time To Put My Money Where My Mouth Is

General

As Monday, and my trip to Coventry nears, it is time to ‘put my money where my mouth is’.  I need to have the courage of my convictions and support Maureen in having the care, if any, she wants in my absence.  Anything else would be hypocritical, and a step down the slippery slope of Prescribed Disengagement.   All I have to decide is when to raise the issue of my trip to Coventry, as too much notice only causes distress.

I need to chat to Maureen about going to see mum as soon as possible.   If she suggests accompanying me, I have to try to make that happen   If she doesn’t feel up to travelling south I have to make sure she has the support she feels she needs.  We mustn’t give Maureen the message that she can’t cope on her own: because she can. The most important thing about any arrangements is that Maureen feels in control of whatever is put in place while I’m not on the scene: along with her safety and welfare of course.

Dementia: Franklin Is The Man!

General

Monday draws ever nearer and I’m getting really excited about seeing my mum and family in Coventry, after such a long time.   However, my excitement isn’t just about seeing family.  It is also because on Monday I will be a relative popping in to see a family member who has dementia.  This should help me to empathise with those relatives who pop in here.  It gives me an opportunity to think about how we can make their visits compatible with our approach to dementia.

In need to seek advice from those ‘on the ground’, my two sisters, to help me plan my visit to Coventry.  How long should I stay with mum; what is the best time of day to visit?  What is the best way for me to behave when I see her again and much more…?  When I’m on site I can also have a chat with her carers, and fit in with the way they go on.

It’s a similar story with my brother.  I hope his wife will join our little get together at lunch- time, so I can catch up with her.  She will be able to help me to get up to speed on what has been going on, and what to expect now John has moved rooms.  There have been changes in his Nursing Home and he has been moved upstairs into slightly better surroundings.

I also want to see if I can use music in any way during my visit.  Again I will seek advice from those on the ground before I play a few tunes.  It’s just a sneaky feeling that mum will tap her feet if I play some Sinatra.  John may well leap out of his chair to Bill Hayley – if only!  I will take advice before I wade in and disturb the status quo in the lives of mum and John.

It would be hypocritical of me to barge into my mum’s and John’s Homes without asking those on the ground how to go on.  How on earth can I expect our visitors us to take any notice of the ‘man on the ground’ here if I don’t take notice of those who know what is going on in Coventry?

Dementia: 12 Point Plan For Christmas

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With Christmas drawing closer we  needed something to help us sort out our plans and  a Web Site I discovered yesterday has come to our rescue.  I have copied a 12 point guide below from the unforgettable org  and made a note after each point to help our plans for the Festive Season:

‘If a loved one has dementia you might be worried about how they’ll cope during the festive season. Read our simple guide to help you make Christmas as enjoyable as possible – for everyone.

1. Have a plan

Taking a, ‘let’s see what happens’ approach to the festive season isn’t going to work when you’re caring for someone with dementia. Spontaneous visits can be stressful so make sure to contact anyone who usually drops by (and who your loved one will definitely want to see) and organise dates and times in advance.  Need to chase up potential visitors.

2. Trust your instinct

It’s not too late to change a plan you may have agreed to initially but which you’re now worried about. For example, if you’re dreading an overnight stay with Aunty Alice because you know your loved one won’t sleep and could become very unsettled, trust your instinct, confront it now and either cancel the trip or agree to a shorter visit which can be done in a day. Have to control numbers and length of visits

3. Always include them

Whether you’re trying to decide what to buy for the grandchildren or who to visit on Boxing Day, make sure you ask the person with dementia for their opinion, thoughts and ideas. Encourage them to help you too, with thinks like setting the table or writing Christmas cards which will provide a sense of purpose for them. Focus on what they can still do to help and feel part of the festivities (however small that may be) rather than what they can’t do. Began discussions yesterday: need to keep talking.

4. Share the care

The biggest mistake many carers make is trying to do too much, so remember you can’t do everything. Friends and relatives are often willing and able to help but they can’t read your mind and you may have to ask them directly for the sort of help you need. If you’re worried that they could struggle to cope with your loved one’s condition, ask for practical help instead. For example, maybe they could wrap your Christmas presents, do the shopping or tidy the house. Have to be realistic about cards and presents.

5. Eat and drink (and be merry)

Whilst your normal routine may be unworkable at Christmas, especially if you’ve got people staying, your loved one still needs to eat and drink regularly. The last thing you want is for them to develop a urinary tract infection so keep a constant eye on their fluid intake, or if you’re too busy nominate someone else for this role (see Rule 4 above). When it comes to mealtimes, it doesn’t matter if they can’t always use a dining room table – providing they feel comfortable and calm, a tray on their lap is fine.  Keep to normal. routines over food and drink.

6. Help them to relax

Stress is often the trigger for challenging, aggressive behaviour which can be really upsetting at Christmas. So it’s in everyone’s interests to keep the person with dementia feeling relaxed. During the day, encourage them to take a nap if they seem tired, or if the house is too noisy, give them some headphones and let them listen to soothing music. Siestas will continue over the Festive Period.

7. Get outside

You don’t have to be holed up indoors at Christmas, and going outside can bring many physical, psychological and social benefits. Try to get out every day even if it’s just for a ten minute walk in a local park – exploring nature can be a great mood booster. ‘Keep walking’ needs to continue as Maureen’s mantra.

8. Make sleep a priority

People with dementia often have trouble sleeping through the night and this can become even more of a problem at Christmas if there’s lots going on. Try to stick to a familiar bedtime routine wherever possible – whether it’s listening to Radio 4 in bed or drinking a hot chocolate – because it will help them feel safe and secure which is particularly important if they’re sleeping in an unfamiliar environment. Stick to normal bedtimes.

9. Make the most of grandchildren

Grandchildren can bring enormous pleasure to people living with dementia and best of all they’re usually non-judgemental. Find a simple activity they can enjoy together, whether it’s colouring in, doing a jigsaw, playing a game (not a noisy one though) or watching a movie, then sit back and enjoy!  Need to keep numbers manageable – 2 max.

10. Be kind to yourself

No matter how busy you are, it’s really important to make time for yourself over Christmas. If you’re physically and emotionally exhausted, you’re likely to become depressed, resentful or ill, all of which will affect your ability to care properly for a loved one. So put yourself first, even if it’s just for ten minutes each day. Build in some ‘me time’.

11. Stay positive

If despite all your best efforts something still goes wrong, don’t despair. Focus instead on what’s gone right, keep it in perspective and move on. For example, if Christmas Day went pretty well, apart from one angry outburst or upsetting moment, surely that means it was an overall success. Remind yourself that nobody’s perfect and you’re doing the best you can. Always look on the bright side.

12. Treasure each moment

When your memory is no longer reliable all you have left is the present moment. So instead of worrying or stressing about what might happen, try to see Christmas through the eyes of the person with dementia; appreciate and enjoy every single good moment, take photographs or videos to capture them and to remind yourself later what’s really important. Enjoy our time together’.