Category Archives: General

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

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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’.

 

Dementia: On Red Alert

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A phone call from our Care Agency has put me on Red Alert about support for Maureen when I go to Coventry for the day on Monday.  They phoned up late yesterday afternoon to advise me that it may not be possible for our regular carers to be here in my absence.  At least there is a little time to shut the barn door before the horse bolts i.e. Maureen ‘legs it’.

I have no intention of postponing my trip to Coventry again because adequate Care has fallen through. My mum is 94 and I need to see her even though she may be unsure who I am after all this time.  There are several other family members I need to see: including my brother who doesn’t know me any longer with the progression of his Alzheimer’s.  The trip takes on something of a Busman’s Holiday and is a stark reminder of life in a residential establishment: something I will go out of my way to avoid for Maureen.

As our Care Plan has not been revised since August 2014 it is important to get something current in place before my away day.  Fortunately, Chloe, our longest serving carer, made a suggestion yesterday that will really help.  She has plans to draft a summary of how she approaches caring for Maureen.  I have agreed to type Chloe’s draft and run it by Gail, our other regular. This means that any newcomer will have something to read before they launch into their own style of caring.

There is also something I can do to help: develop a Welcome Pack to working with us.  This will include some basic information about our household, and Maureen’s usual daily schedule.  It is important to keep this material short, as carers are in the thick of it once they have clocked in.  If we manage to get all of this in place for Monday I will travel to Coventry with a clear conscience that I have done all I can to prevent Maureen from wanting to ‘leg it’ again. .

 

 

Dementia: Time To Pull Our Socks Up!

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Yesterday didn’t go to plan: Maureen’s reaction to me going to watch football was hostile, and the Sky Blues lost to Sheffield United.  

When I left to see my beloved Sky Blues shortly before noon Maureen went ‘off on one’.  As I was leaving she became verbally aggressive, making threats, and banging doors.  She ‘legged it’ as soon as I was out the door, and Sue, our carer, had to trail her around the streets for some time before she could cajole her back home.  

It is quite simple what caused Maureen to react with hostilty to my exit –FEAR.  Unfortunately Sue our carer had only met us once before, and that was months ago.  As I was hurriedly explaining Maureen’s current presentation to Sue, she became extremely agitated.  She complained about us whispering in the kitchen, and slammed the lounge door. What would anyone make of their husband whispering to a stranger before he was about to leave the house? 

Two issues created difficulties yesterday morning, and caused unnecessary distress for Maureen.   Firstly, our Care Plan is completely out of date and there is little point in carers reading it.  Secondly, carers don’t have time to read the notes of their colleagues before they start their shift.  This is completely unacceptable and has to stop!  Whispering in the kitchen is bad practise and likely to cause distress.

My addiction to the Sky Blues led me to leave Maureen with a stranger: I got what I deserved, on the pitch, and off.  Maureen didn’t: we all need to pull our socks up!

The other thing I need to do is stay in bed until it gets light in the morning.  This will give Maureen reassurance and my aching body chance to heal: my legs are troubling me once again.  I am going to try listening to a Buddhist meditation compact disk when I awake early.  This could well help on a number of fronts.  Several people are getting to me at the moment and learning to: ‘cherish others’ is something I need to work on!

Dementia: A Sky Blue Break

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Saturday went well with antibiotics being taken without too much difficulty.  I gave Maureen breakfast in bed, while playing  YouTube in the background.  I continued with the musical input once she was downstairs and we watched excerpts from a couple of musicals.

We made lunch together: with Maureen peeling and chopping the ingredients for vegetable soup.  I slipped in beside her on the clearing up duties, and eased her away from the sink.  Her efforts at washing up were pretty fruitless but drying up didn’t pose any problems.

Maureen took to the sofa for a couple of hours after lunch, and on waking made for bed. She remained for the rest of the day and night.  I have taken her drinks up periodically, and kept her on schedule with medication.

These frequent trips up, and down, stairs take me back 40 years to the time I was giving ‘Bromptons Cocktail’, to Annette my 29 year old wife. Whenever, I feel jaded I count my blessings that Maureen is expected to live well beyond ‘the roses coming into bloom’: the prognosis at that time for Annette.  I am hoping that infection is behind Maureen’s lack of energy, and confusion, rather than a permanent dip in her presentation: only time will tell.

This afternoon I have some special time out.  Our social worker has kindly arranged additional care so  I can go to a local Club to watch Coventry City play Sheffield United on Sky Sports.  I hope those Blue Boys don’t let me down: I need something to give me a lift at the moment!

 

Dementia: Infection Making Matters Worse

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It all makes sense now: why Maureen has been so tired and confused over the last few days – infection is dragging her down.  A course of antibiotics should do the trick, and things should improve fairly quickly.  It’s another one of those occasions where there is no going without pain.  The pain being the difficulty in getting Maureen to take an additional four tablets a day.

Maureen is confused about how she has got an infection.  Her questions have come thick and fast: seeking an explanation about what has caused the infection; when she has to take the antibiotics, and for how long?   Unfortunately, the infection is adding to her general confusion and all of this is difficult for her to absorb and understand.

At first Maureen was in despair over the news of the infection, and I encouraged her to try and sleep it off.  She awoke in the evening looking a little more sprightly, and I let the music play.  With Art Garfunkel to accompany her she gave a good rendition of a couple of numbers.  So then I went for the jugular and put on South Pacific and with her soup spoon in hand she once again: ‘Washed That Man Right Out of Her Hair’ – Get the Picture?

It is likely to be a challenging  few days until the antibiotics kick.  I need to be patient and yet again draw on the wisdom of Teepa Snow.  These  5 Tips for Care Partners are a useful reminder of where I need to focus my attention in the next few days:teepasnow

1) Step back first

Before you do anything, take stock of what’s going on in the environment, observe the person and their behaviour, be mindful of the moment in time – forget about what happened an hour ago or yesterday. The reality of a person with dementia can be extraordinarily dynamic. Ask yourself what is going on for them now, at this particular point in time, before you say or do anything. (See also: 1) the “B” in BANGS; and 2)  the “A” in BANGS)

2) Respond don’t react

It’s easy to get caught up in reacting to other people and in the process behave in ways that are unproductive. With the help of a counsellor as well as by teaching myself through experience, I learned to look at my own reactions to “problematic” responsive behaviours which I discovered I often provoked myself! That was an eye opener I can tell you.

Once I identified that I was part of the problem, I was able to respond in much more helpful ways and thus become part of the solution. (See also: the “A” in BANGS)

3) Have a plan

Yes, we need to fill the day with activities, meals, quiet time, etc. But, and it’s a BIG but, it’s critical to be flexible. The plan we have may not fit with the changing minute-to-minute wants, needs and desires of the person with dementia. Plans are good guidelines. They fail when we try to stick to them at all costs. Better to go with the flow. (See also: the “G” in BANGS)

4) Know about control

Remember you cannot control anyone else’s behaviour, especially someone with dementia whose ability to use reason and logic may be significantly reduced. The only person’s behaviour you can control is your own. Teach yourself to behave in ways that reduce anxiety for yourself and the person with dementia. (See also: the “A” in BANGS)

5) Stop doing what doesn’t work’

Teepa Snow expands on her tips in this short video clip.

 

 

Dementia:Musical Friday

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As I messed up earlier with a 5 am posting I have decided on a little more today.  I have already used a little music therapy to relax myself this morning.  Someone Like You has been booming out from my Tablet and Smart T V: I am a recent convert to that fabulous woman.

I am going to see if music can help to ground Maureen today.  What I have in mind is to put on those tunes that she used to sing along to 50 years ago whilst doing her housework.  There is no doubt that this is usually a mood lifter.  If things go well I will put on South Pacific and she will sing with gusto: ‘I’m going to wash that man right out of my hair’.  That always makes her feel good: those who know her will ‘get the picture’.

My final plan in this musical journey is to put on some Festive Music.  I want to see if Christmas can be moved into her mind set.  I have a sneaking feeling that there are some very happy memories there that we might just tap into.  In all of this I will proceed with caution because as my cyber friend Kate Swaffer  says; ‘gently, genty catchee monkey’.  That must be the Aussie in you Kate: Maureen always says ‘slowly’!