Guest Post: Living with Dementia (my story)

A guest post from John Stringer:

This is my Mum, aged 75.  She has advanced alzheimers (dementia). Her memory is about 5 seconds long. She does not know who I am, who she is, where she is, yet we still have a meaningful and loving relationship. My youngest sister and I have just won Joint-Guardianship and Administration of her with the support of the WA Government and Attorney’s Office.  If you’re living with dementia, or about to confront it, read more below the photo. This is our story.

My Mum and I have always been close.  We had long and intelligent conversations about life, God, the world and people. We wrote to each other a lot about literature and history. We’re both melancholic personalities which leads one to pondering life’s deep waters. But that is all changed now.  Mum is gone, and someone else is in her body.  Her personality is different.  Her memory is staccato, but otherwise she is in perfect health, walks, and is very sociable.  She is also very loving.

Sometimes she thinks I’m her father.  She asks constantly if I have a girlfriend or a wife?  She has no idea she lives in Perth, Australia; thinks she is in Christchurch, NZ, where she lived most of her life and raised her family of four children. She has no idea she had children or was married.  I still travel the 5000 km to see her and my youngest sister, when I can, because it’s so worth it.

Y’see, it’s not about me.  It’s about her; honouring her memory and her integrity now as a person.  It doesn’t matter that she can’t remember me.  I am caring for her now, like she did for me and my twin sister and siblings when we were mewling, puking and needed our nappies changed. Her love was unconditional then, mine is now. This is the transaction of life for the unselfish.

If you can do this, and accept dementia as simply a wearing out of the body, like eyesight, or mobility, and adapt philosophically to change, you can cope with alzheimers.  Love conquers all. It’s possible to maintain a loving and rich relationship with your demented parent.

One of the tricks to being with dementia sufferers is “white lies.”  Dementia patients are deluded and their minds live in fantasies and incongruities (that they are eight, that they are going home to a long-dead mother).  It is best to play along, because establishing “the facts” is inappropriate to their worn out brain and causes them distress and confusion. In conversation with my Mother I play along, “Oh yes, I am married, we have seven children,”  ”yes, I have a girlfriend…several [laughter],”  ”I have a proper job,”  ’I’m a pilot,” “I’m a doctor,” “yes, we are in New Zealand, not Australia,”  ’We’ll go home after lunch,” etc.  As a Christian I have no moral dilemma with this.  My mother always had a sophisticated sense of humour and multi-levelled conversations.

Dementia sufferers regress.  They progressively become 60, 40, 10 etc.  and memories before these ages disappear as their memory banks progressively erode.  After a while they are “too young to be married, “are eight living with their parents,” until eventually they become babies again.  This is what alzheimers does.  So I live in the past with my mother, within memories my mother still has: old places and people she knew, school, favourite holidays, an old bach, her parents, etc.

I can talk for hours with my mother in this way.  We laugh and joke,  She scolds me, or cracks puns.  We do jigsaws, play cards, we frequently hold hands and hug.  She gets lots of kisses, because regardless of what she does or doesn’t remember, and who she is now, she still deserves to be loved by me, now.  And I will do everything I can to make this five second moment happy for her.  It is of no consequence that she will forget it within a breath, and have no memory of me after I leave her, happily tucking into lunch.

Alzheimers patients suffer from a special syndrome called “the sundowner effect.”  This occurs between 4 – 7pm when the sun starts to wain.  They become anxious and want to pack up and go home, so they can feel secure.  It is a common emotion in children, who were perhaps collected late from school by a parent or from Cubs as it started to get dark.  It relates to a threat of abandonment and not being loved.  This time period requires daily attention, and this is where families are needed, to assist staff in homes who cannot necessarily cope with everyone one-on-one.  We rostered family to converge their visits to my mother at this time, to lessen effects.  Sometimes they can be violent and become very agitated.  This is where you can draw in old friends (of theirs) or of yours who had connections with your parent.  Short sweet visits are best (so its not too onerous for them) and they feel able to come reasonably frequently. A 15 minute visit once a week is better than none at all.

If you’re not a talker, like me, there are other things you can do.  Sing songs with them, take them for a drive (they enjoy looking at things).  Take them to a weekly church service, for a walk to the shops, bring them while you get your groceries.  Just include your parent in daily activities.  Home for a Sunday lunch is a simple idea, but avoid busy children and noise as this can distress dementia patients who struggle to make sense of it all.

Other things we’ve done, is laminate ‘photo trees’ of her family with big captions on her wall.  ”My son John.” These create great circular talking points. Also put up big photos of older familiar places with captions.  “My home at Tuam Street” (when she was a child).  Mum remembers these (for now) and the familiarity is reassuring to her.  Have  a TV with dvds of favourite programmes (Coronation St) that can loop in their room. Picture books are good, they like flipping through and exercising their mind trying to work out “whale,” “pussy cat,” etc and this can prompt conversation between you.

A fish tank in their room can be good, they can look at the fish for ages. Pets are excellent. A cat or stroking a communal dog brings great joy.

Security is a big issue.  While my mother remembers little, she still had the presence of mind to memorize the exterior door pad code, and escape.  This led to several very dangerous physical incidents for my mother and to something of a crisis in our family.  She eventually got to a home which is now so secure she can never get out, unless we take her. My mother had seven homes in seven years and this was extremely dislocating for her condition.  She was also taking her heritage jewelry off (ie rings or brooches owned by her mother) and these can disappear (sometimes pilfered by other visitors or staff).  So, we took many of these away for safe-keeping or repatriated them to members of the family to whom they were significant.  This is better than having them lost or stolen.

As well as taking off their jewelry, sometimes patients will take off their clothes. That’s why it’s important to check the quality and personality of the staff in the home you select for your parent, if they are no longer able to live with you at home (which many attempt).  Does the home have an imbalance of immigrant staff on low wages (and therefore perhaps on low wages)?  are the professional staff balanced with a  variety of older men and women with senior qualifications? What is the ratio to staff and residents (my Mum is in a unit with 5 others, in a village of five other units, a total of 25).  This provides good one-on-one care.  Visit several times and get to know the nurses, cleaning staff, cook.  Observe their interaction with residents.  Visit several times before committing. Are they loving compassionate generous people? This is your parent you’re choosing for, so be thorough.

We first noticed Mum’s alzheimers when she asked if we wanted a cup of tea and forgot to make it, then asked us again. She has had the disease now for seven years. It is not only an old person’s condition; people in their forties get it.

As she began to progress, I gave my mother a hardbound ‘Notebook’ of her own, to diary her journey for her grandchildren, before her memory was too far gone,  This gave us a valuable final epistle from the mother we were losing, before we gained a new one, lost in the fogs of time.

My Mum is gone, but she’s still here. It need not be seen as a traumatic curse to be avoided, mourned or resisted.  Just go with it, for your and their sake.  Life is full of struggles, and you can make it work for you and them in this difficult time of life.  How you deal with things, and your attitudes (never get frustrated or ‘blame; them for their condition, or ‘correct ‘ their memory) is as affecting as their condition.  And don’t take it personally.  Your ability to compensate and continue loving your parent is about the quality of your character, not theirs.

Alzheimers sufferers often manifest the attributes and character they had in life, and these traits can accentuate.  If they were kind and patient, they will be more so.  Bitter selfish people tend to become a problem when dementia sets in, and some men can become lecherous. It is a lesson about the richness of values throughout life.

There are dozens of dementia support groups and societies. Other resources I would recommend to you include the movie The Notebook (2004), and Louis Theroux’s BBC series “Extreme Love: Dementia.”  If any of your are struggling, I am happy to talk and help you out (contact me at http://conzervative.wordpress.com).

~ John Stringer (Christchurch).

Thanks John for such a personal sharing.