Sunday, 18 January 2015

In the midst of life, death ~ a baby dies

~ Article updated on 9th August 2015 ~

The line which divides life from death is so slender, and particularly so at birth.  Most often all is well and another little human enters the world alive and kicking.  But things can go wrong, sometimes when least expected.  People whose business it is to make all-important decisions sometimes make mistakes.  

And so it was that a new little person, a new and perfect little daughter, longed for by her parents, her arrival eagerly awaited by her extended family, struggled unobserved against impossible odds and died just a few hours before her expected delivery.  In a stark reversal her death preceded her birth, a shocking and devastating loss.  

She was and is, however, a much loved part of that extended family - named, loved, admired, her likeness drawn by her grieving father, and the little brother who had looked forward to having a new little sister.  

Those assembled to be present at the joyful arrival became a funeral party, with no detail overlooked.  Relatives and friends brought around their own babies and little ones, who were passed around, admired and treasured.  

The love that illuminates the connections between ourselves and those we truly love, sometimes with those we have never even properly met, endures despite physical loss and separation.  As this little girl's uncle says of her, "She is a part of us, and always will be."  

And so I have chosen Dido's song "White Flag" as my tribute.  Although the song is about the songwriter's love for a man, it describes the enduring quality of true love, and acknowledges the imperfect world in which we live - and the shadows of the might-have-beens.  This dear little girl should be here with us now, and she isn't.

I am reminded to appreciate the little things: the taste and heat of a good cup of tea; the quality of my own breath and heartbeat which keep on keeping on; and the capacity to spend time with those dear to me who are here now; also the ability to crawl around in my garden trimming, weeding, cosseting my plants, observing the insects and spiders as they go about their business, aware of the birds chattering in the trees overhead.  Arguments and grievances both large and small are still there but not the main thing.  I am here now, and I have what I have, to make the best of, so I had better get on with it.

God speed, little one.

The more this subject is talked about the more it becomes apparant that infant death occurs much more often than one would expect.

Maori singer and entertainer Stan Walker has the name of a daughter he lost through miscarriage tattooed on the side of his neck, "Ataahua", meaning 'beautiful'.  I am a big fan of Stan's.

Here is musician Ed Sheeran singing about loss of a child through miscarriage.  Although this loss was experienced by a close friend rather than himself he sings about it as if he were the parent.  It's beautiful.

For those seeking information and support the links below may be worth a look.  Both organisations recommend making memories of the baby, taking photographs, keeping mementos, and so on.  While it may be hard at the time this makes total sense.  The opportunity to do so is of such short duration.
  • Sands New Zealand - an organisation which supports those whose babies have died at any stage of gestation or early infancy.
  • Now I lay me down to sleep (NILMDTS) - a serivce for the photographing of the infant - precious memories for family.  The video shown below is published by their site.  It's definitely worth watching - very sensitive and helpful: loving parents...

Thursday, 1 January 2015

Elderly and dependent ~ introduction to the series ~ finding the way forward

Kowhai flowers
for cheer
and encouragement
The decline into disability and infirmity in old age presents big challenges, to those who are elderly and also to family and friends.  In this series of articles I want to share what I have learnt from personal experience in the hope that it will be helpful to others.

When my mother suffered a bad fall nearly a year ago the effect was shattering: it was clear that she could no longer live in her own home.  Not only was it shattering for her with physical pain and the distressful uprooting of her whole way of life, but also for us, her family, as we scrambled to cope with her care and take over management of her affairs. 

For many of us the territory is uncharted and there is no overview: the services and facilities are there, but we may not know how they function, and although some explanations are forthcoming large areas are likely to be completely unknown.  I am still working some things out.  If I had known better what to expect and what was expected of me things would have been a great deal easier.

I well aware that not everyone has family to assist them, and also that elderly people will want to gain their own understanding and consider their futures for themselves.  For this reason, although I write as a daughter, I am writing for the elderly as well as for those who care for them.  It all helps.  Preparation, both practical and psychological, is important and for those who do not have family this is all the more valuable.

It's a huge area, which I won't attempt to cover in full.  I do hope however, that readers will find a good range of information and ideas which provide a helpful background and useful reference points.

The bulk of content relates to elder care in general: 
  • preparation and ground work
  • identifying and attending to a raft of personal care issues and working out who will handle them 
  • lots of practical ideas about how to go about these
  • the importance of establishing solid relationships with the medical practitioners of our choice
  • legal protection 
  • having good routines for paying bills and handling paperwork
  • and above all addressing family ties and obligations, and if there are none, of supportive friendships 
These issues are common to us all, wherever we live.

A portion of content is specific to the New Zealand context, the details of which will no doubt change over time.  For this reason I have not attempted to dwell on technicalities, but leave these for the further investigation of readers. 

In my mother's situation much of the responsibility and workload fell to me, but I have not done it alone.  There has been support from other members of the family and good professional relationships have been established over time.  It has taken a long time for my mother's life to be established in a new pattern and in a completely different place.  The length of time was one thing I had no idea of but will come as no surprise to those of similar experience.

As the series is based on directly on my experiences and my mother's I have altered some details and identifying features to maintain her privacy.  I refer to my mother as 'Ellen'.  

I wish all readers health, strength, and above all, the energy to keep on keeping on!  If we keep our eyes open and our wits about us we can do it; good solutions can be found.  I have chosen the yellow Kowhai flower as an emblem for this series for cheer and encouragement.

Given the scope of the subject I will be writing about it from time to time and not necessarily in a logical sequence.  For this reason I have established a list of articles on a page of their own and will add links to it as I publish new articles:  

Click on the link below to find a complete list of articles in this series:

Elderly and dependent ~ preparation, an overview to finding the way forward ~

Increasing frailty in old age can be frightening and the power of choice seem to rapidly diminish.  However, there are a number of straightforward steps that can be taken at any stage which can make the transition from independent living to dependent care a whole lot easier and increase the range of choice.

This article is particularly directed to elderly readers who are considering plans for the future, but is just as relevant to those likely to be helping them.

I expect to write about these topics individually, but want first to give an overview of useful points:
  • The labelling of clothing and other personal items that you may wish to have with you either in hospital or in a rest home: if the need for these seems remote consider the cost of labels as a small investment against furture need, and a likely preventative of future worry.  Start with basic items such as underclothes and nightwear.  I have already written further about this:
  • Get things straight with your doctor / General Practitioner: it may be helpful to have a consultation with him or her to go over contingency plans and to establish what choices are available for additional care in your own home as well as finding out the criteria for rest home care.  Ones choice of doctor is very personal and some doctors will suit some people and not others.  If you have any doubts as to the compatibility of yourself and your present doctor you could ask around for recommendations for a different one.  
    • In New Zealand your GP is the king pin in refering you to health service providers as funded by the government; he or she also is the authority in deciding whether or not you are still mentally capable of making your own decisions, so it's very important that your relationship is one of mutual trust and respect.
  • Establish adequate legal protection for yourself and your property: here again, your solicitor / lawyer may play a very large part in keeping you safe and ensuring that your wishes are carried out.  As with your doctor, be sure that your relationship with this person is one of mutual trust and respect.  If you are not entirely comfortable with them, consider switching to someone who suits you better.
    • Make sure you have a will and that it is up to date, reflects your circumstances and future contingencies.  Does it include the possibility of changed circumstances, such as marrying again, or having sold your home and living in a rest home?  However remote these possibilities may seem, they can happen all of a sudden and if we are incapacitated (or die!) we may not be able to alter them suitably.
    • Set up Power of Attorney authorities to act for you in the event of not being able to handle your own affairs.  In New Zealand there are two levels of these: one relating to property and the other relating to personal care.  When considering who to place in these roles it is vitally important to look carefully at such matters as individual suitability, family dynamics, and the responsibilities that individuals are already commited to elsewhere.  Once a Power of Attorney is activated it is likely to lead directly to a lot of work for those holding this role, as well as being a relationship requiring a huge level of trust so consider it very carefully before commiting to it.  Talk to your solicitor / lawyer about it, discuss it with friends and ask for their opinions, and above all talk to the people you are considering asking to act on your behalf in this capacity.  You can change those named, but it is fairly costly to do so, and if, through illness or infirmity your doctor judges you to have lost the capability to make your own decisions these cannot be revoked except through court order, requiring lengthy and no doubt costly proceedings.  Once you have these established keep 'Certified True' copies on file, on paper as well as in electronic format if you have this facility.  
    • You can find my article about acting in this capacity here: 
  • Check funeral insurance or other arrangements for your funeral and costs: this is a purely practical matter and can best be treated as just another piece of paperwork, such as ensuring one has other forms of adequate insurance or budgeted funds set aside for the purpose.  This website may be useful:
  • Organise paperwork, payments and filing systems - or get someone else to do it, so that they are orderly and can be handled by others.  Bear in mind that once the power of attorney authorities are activated service providers will need copies of Power or Attorney documents on file, usually in electronic format. 
  • Update address lists - personal, professional and medical: in setting up Ellen's I included customer / client and policy and other reference numbers, etc, which has made business dealings much easier.
  • Look at rest homes in your area as well as others that are further away: you may or may not need to make an appointment.  Ask to be shown over the complex.  I suggest you allow up to an hour: if you rapidly decide the place is unsuitable you won't need it, but if it seems a possibility it may be sensible to spend time going into financial requirements and finding exactly what level of accommodation can be expected.  Although standard rates apply to rest home residency in New Zealand I was staggered to discover that this does not in the least mean that the same standard of accommodation is offered.  For example, there may be an additional daily charge in having an adjacent toilet / ensuite.  
    • A GP offered this advice about choosing a rest home: if you like the room and don't like the manager, don't even consider the room.  I agree wholeheartedly as in my observation the personality and attitude of the manager / proprietor has a great influence on the whole establishment.
    • Take friends and or family with you and give yourself time to consider the facts and reflect on how you feel about each place.
  • Look into every subsidy and concesssion available for your care.  You may have plenty of funds and assets at present but once you require substantial levels of care these are likely to be rapidly eroded.  In New Zealand you may be eligible for some or all of the following; there will no doubt be others:
    • Community Services Card - from WINZ
    • Disability Allowance - funding towards itemised health costs, paid for by WINZ
    • Taxi / mobility vouchers, subsidised taxi fares - funded by local authorities in conjunction with central government but applied for through your doctor
    • Mobility parking cards, which allow free parking in Disabled Parking areas - these are personal to the disabled person and very helpful to whoever is driving
    • High Use Health Cards - usually applied for by one's doctor / GP, which gives the medical practice additional funding for the delivery of their services.  They may or may not use it to subsidise individual consultations.
Above all, discuss these things with your family and friends and see what they have to say about them.

Working through these points before substantial change becomes necessary will hopefully alleviate fears about the future, allowing you time to do the groundwork at your own pace while you have the leisure to do so, and to stay as much in charge as possible as circumstances alter.

Click on the link below to find a complete list of articles in this series:

Name tags and labels for the elderly and dependent ~ a top priority

The labelling of clothing and other personal items is one very simple way to prepare for the possibility of hospitalisation and / or rest home care, one which I rate as a top priority.  It does require time and effort but can be quite a pleasant task; I unexpectedly found I rather enjoyed labelling Ellen's things once I got into the swing of it even though I didn't have the leisure of doing it ahead of time.

Get a good supply and start sewing them in - or get someone else to do them for you, but one way or another, get them in.  Do it before you need to, as keeping track of unnamed clothing in both hospitals and resthomes takes time and considerable nervous energy, and some of it is likely be lost forever.  Institutional laundries handle vast quantities of clothing and staff can't be expected to keep track of unidentified individual items. 

How many is enough?  The rest home Ellen moved into advised that the usual order was for two hundred.  Yes, that's right, 200.  I raised my eyebrows over what seemed like a high number, but accepted that the administrators there were likely to know best, and they were quite right.  Think about pairs of socks, undergarments, coats, hats, gloves, scarves, nightwear, slippers, as well as all the other garments, plus such things as personal bed linen.  Even if you end up with more than you need it's far simpler to have some left over than not to have enough.  When sewing in Ellen I used them all up, so now carefully remove and re-use labels from any garments once they are no longer wanted.

Name tags are vastly preferable to marking pencil, which is permanent and can be untidy.  Permanent marking also makes it harder to pass on clothes once they are finished with. 

Cotton tape factory-printed labels with the first initial followed by the family name have proved more than adequate: they are easy to sew on and comfortable to wear.  The ones I got came in a continuous roll.  If yours come like this leave enough blank tape on either side of the name to turn the raw ends under and stitch the label flat.  

I have no experience with iron-on ones and if these appeal suggest that enquiry be made as to how long they are expected to remain secure and how easy they are to remove once no longer needed.

Cost: we paid less than $40 for the batch of 200 cloth tape ones described above.  Prices vary from one provider to another, as do styles and types of labels.

Where to put them: I was instructed to sew them inside the centre back, near the top edge of all clothing.  In tops this means just below the collar (if put inside the collar itself it may show when worn), and in pants, in the back of the waistband.  This makes labels easy to see and speads up handling by staff, and once I got into the way of managing Ellen's clothes I could see the sense of this: I can easily see what is hers and spot any items belonging to other residents that have been incorrectly put in with her things.

What colour of thread to use: This depends on one's personal colour scheme.  I most often used white, cream, grey and black, but also mid green, pale blue and brown, colours which Ellen wears a lot.

Other items which require different sorts of labels, such as shoes, phones and glasswear I labelled with paper stick-on labels covered with strips of clear packing tape which protect them from water.  On a few items I even used elastoplast tape marked with ballpoint pen.    

I can't overstate the value of getting things labelled: 
Ellen was hospitalised without warning in the middle of the night and we were quite unprepared in this respect with the result that some garments were lost and others had her name untidily marked in with ugly permanent marker pencil by staff.

Personal laundry bags prominently positioned and clearly marked with the name of the resident or patient and stating that family will do all washing are unlikely to prevent the loss of items.  Staff are looking after lots of people and will tend to go about their duties according to their usual routine and may automatically put things into the communal laundry.

Even when institutional laundries set aside unlabelled clothing in Lost Property boxes it is difficult to know one set of socks and underwear from another.  Furthermore, unless you know that things have gone missing they may sit in such boxes unclaimed until otherwise disposed of; and, from a hastily packed suitcase of clothes, you may never realise that some things have disappeared.  I know all this first hand. 

For those not expecting to go into rest home care in the near future, if ever, the value of name tags is still worth considering: unexpected accidents and illness can happen to any of us at any time.  Even if only underwear, socks and nightwear are labelled, that will give you and your family and friends a chance to get the remainder stitched in to less urgently needed clothing.  And remember a tag for your suitcase and another to keep in your handbag.

Click on the link below to find a complete list of articles in this series: