Any perusal of the literature about dementia would identify the need for Care Partners’ to secure arrangements for adequate respite.  The general view is that time off from being on call 24/7 is vital to avoid care burn out.  I want to argue that such an approach to respite is indicative of something Kate Swaffer calls Prescribed Disengagement.  It is also an approach that does not sit easily within our attempt to revert to our normal life following Maureen’s stroke.

A few weeks after Maureen came out of hospital I went on holiday with two of my daughters.  Because of proximity to stroke Maureen could not have taken up her place on the trip. Maureen’s family came to the rescue and stayed with her, while the three of us enjoyed a week on the Algarve.

I made a tactical error a couple of months ago and Maureen got the message that she had tired me out.  I lost the plot completely and said : ‘I needed to get away because I was tired’.  When I look back I don’t know what I was thinking of to convey such a message to someone with dementia.  What better than to convey to your wife that she had become such a heavy burden that you needed a break before you could resume your caring role.  In my defence I would want to argue that tiredness interferes with pragmatic thinking!  A morse constructive line might have been: ‘we could both do with a holiday’.

We are still in Nottingham staying with family.  What better place to take respite than Maureen’s birth place.  Who better to stay with than her brother and his wife.  So we lodge in a familiar place where Maureen knows she is loved and understood.  That understanding comes from Dianne and Barrie experiencing dementia within their own family.  They regaled us with stories of Dianne’s mums presentation for years.

I am not arguing that married couples should behave like siameses twins: joined at the hip until they are separated by the Grim Reaper.  Having separate interest is the glue that supports many a married couple.  What I am asserting is that the general approach to respite is counterproductive in our case at this point in time: we need to foster opportunities like this one for us both to find opportunities for respite breaks.  Now I face a dilemma on this front in ten days time.

I need to visit Coventry and London very shortly.  It would not be sensible for Maureen to accompany me on the whole tour.  What I need to attempt is a set of words that does not portray the need to escape from carer burnout but some time out to see my own family.  The real sticking point will be dementia can lead to all sorts of complications in thinking and I need to be very skillful in my presentation of my trip.  If my time out is seen as desertion or elevating the status of my own family then I am in for a rough ride.  Such discussion are made problematic when rational thought and logic are dominant when dementia takes hold.  Wish me luck with the discussions that are essential in the next few days.

Exceptional news to report: after 18 months we have ventured outside Lincolnshire.  We have made it to Nottingham, to visit Maureen’s brother and his wife.  Maureen is over the moon that she has at last travelled any distance after such a long time.  This is a significant achievement – team work has paid off at long last.

Tracey, our social worker, helped to pave the way on Tuesday. As Batman she helped,alongside Robin, set the wheels in motion.  Gale then followed up by playing a blinder; to almost push Maureen into our car shortly after noon yesterday.  Her contributions was immense, as she helped me to nurse Maureen along yesterday morning.

Gale has been along to our house on a couple of occasions. Her performance yesterday was outstanding.  As soon as she arrived she warmed to the theme of cajoling Maureen to go on a day trip to Nottingham.  She played her part exactly to the script: listening to Maureen’s tales of all sorts of things; whilst gently nudging her to make the journey south.

Gale’s compassion, understanding of dementia and ability to make appropriate interventions helped me to see we had another gem on our hands.  I took immediate action and contacted the Agency to request that Gale becomes our ‘Girl Wednesday’.  I left Michelle.at the Agency, in no doubt that this was far more than a request, when she replied that she would ‘do her best’ to accommodate my ‘demands’.

I have no idea how today will go.  It is possible that Maureen will need to ‘Sleep for England’ for a couple of days.  On the other hand we might be able to continue our travels a little further South.  It’s all a question of taking a ‘rain check’ with the umbrella of common sense in hand,  Whatever happens: Gold Medals are awarded to Tracey and Gale.  Platinum of course for Maureen.

Generally people, even family members, don’t know how to provide comfort once a diagnosis of dementia has been made.  You read all sorts of stories of family and friends not keeping touch, once dementia takes hold.  If they do ‘hang on in there’ they may be unsure what to say, or how to help.  I think the following suggestions from a book by Mara Botonis, ‘When Caring Takes Courage’,  are really helpful on this front:

1. A small gesture goes a long, long way. The gifts that matter most are the ones that help me save time and energy and are a treat that I can enjoy at home without arranging care. I don’t always have time to read a book or watch a movie, or take advantage of invites to restaurant meals or spa treatments, but these are things that I can and will enjoy. Dropping off a pre-made dinner, a CD with my favorite songs, a favorite dessert or snack, a photo album you made of pictures of us over the years, a soft cuddly blanket, fresh flowers or a selection of teas and coffees would be so welcome.
2. Please don’t make me feel guilty. I’m sorry I may be missing family gatherings, not remembering important events or not calling as often as I used to. Please try to understand my whole world is turned upside down right now.
3. Write me a note or an email. I can’t always talk on the phone or devote the time to an in-person visit. The times during the day when I’m “free” to socialize are usually only the hours when my loved one is sleeping and, even then, I keep watchful eyes and listening ears tuned into what’s going on around me. If you write to me, I can read it when I have time to truly enjoy it.
4. Be patient with me when we do connect. It may seem like I’m tired, cranky, consumed by everything Alzheimer’s- and dementia-related and almost incapable of summoning the social graces to make “small talk.” Just know that I care about you, I miss you, and I’m very interested in your life. I’m just really wiped out right now. As hard as this is for me, I wouldn’t change it. Love is about being there for the other person, especially when they need you most.
5. Reminisce with me. I willingly, loving and without hesitation put another person first for most parts of my every day. Sometimes I feel like big parts of me get “lost.” Please remind me of a time before Alzheimer’s and dementia entered our lives. You may be the only one in my life that I get to do this with.
6. If you think I’m doing a good job, please tell me. Most days I feel like I’m failing, trying to fight an incurable disease and the only witness to my efforts is often unable to let me know if I’m doing anything right.
7. Please don’t keep telling me about the latest miracle cure, research study or scientific article. I hate this disease as well, but right now, my focus is on the person I love that is currently living with it, not those in the future that may be positively impacted by these efforts decades from now.
8. You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes, and I’m here every day. We’ll get through this, you and I, together.
9. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying.

©2014, “When Caring Takes Courage.” by Mara Botonis

 One futher quote from Mara’s book:

‘even those who are are ‘swamped’ can find one thing on this list they can absorb or do’.

I think I may have mentioned before my addiction to following Coventry City – The Sky Blues.  Any fan of my age would remember the transformation of the Club under Jimmy Hill, the bearded gentleman in the picture below.  The sad news for all Coventry fans is that the ‘Bearded Wonder’, has Alzheimer’s, and is in a nursing home on the South Coast  as he is too ill to be looked after at home.

As a ‘Coventry Kid’ my loyalties to my team continue.  On most Saturday afternoons I am glued to Sky Blue Player listening  to every move of the match.  It remains very important to me that the Sky Blues do well.  I am optimistic that another Sky Blue revolution is underway and the fortunes of the Club are moving in a positive direction.

I accept that a similar revolution is required in my own approach to life in general: some ‘Blue Sky’  thinking.  If our journey with dementia is to find a good route, I need to reign in my impulsive nature.  Long lists of aspirations just won’t help.  They will only lead to frustration, and disappointment all round.  However, if I can discipline myself to take one day at a time, and one small aspiration, then there can be more blue sky ahead.

So my ‘cunning plan’ on the rumba front, as I mentioned in yesterday’s blog is to vary my routine when I take my wife in hold.  Instead of smooching in the kitchen: just add in the odd move from the rumba.  All I need to do is watch our DVD; rehearse a few moves, and we are on our way.  As Maureen always says: ‘Slowly Slowly Catchee Monkey’.

Today is a very sad day for me.  It is the last time I will see Heather, my Admiral Nurse.  She will  be emigrating to New Zealand in the next couple of weeks.

I could write volumes about the exceptional support she has given me in the last eighteen months. Surrounded by those who in my view offer services that are not fit for purpose; she stands out like a beacon of good practise.

Whenever I have contacted Heather she has always asked one simple question: ‘What can I do to help?’  It was reassuring to know I could always rely upon Heather.  She always did what she had agreed to do. Such a rarity on our a journey with dementia; where the only sensible way as I pointed out yesterday appears to be self help i.e. DIY.

Heather I know you may reach for the sick bucket on reading this.  That is the sort of person you are: professionalism personified.  I will really miss your support at this challenging time in our lives.

What a shame that so many others lack your knowledge of dementia, and compassion.

Good luck girl, you deserve it, and sincere thanks.