Guest Post: Living with Dementia (my story)

October 27th, 2012 at 4:43 pm by David Farrar

A guest post from :

This is my Mum, aged 75.  She has advanced (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.

Tags: ,

23 Responses to “Guest Post: Living with Dementia (my story)”

  1. Aredhel777 (279 comments) says:

    And yet abortion on the other hand is wrong because the children haven’t developed sentience? (aimed at DPF.)

    [DPF: 20 demerits. If you're are incapable of keeping politics out of a thread like this, then go away and never return]

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  2. Aredhel777 (279 comments) says:

    The story was very touching.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  3. Tom B (55 comments) says:

    Thank you John, that was very well told.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  4. Johnboy (15,390 comments) says:

    My Dad died sitting in his favourite chair at 84 having just asked my Mum for a cup of tea. Gone in thirty seconds.
    My Mum died at 91 after 21 months of dementia. I know which way I would prefer.
    Thank you John Stringer for sharing this with us. :)

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  5. liarbors a joke (1,069 comments) says:

    Yes thank you for sharing. Brings back memories of my late Dad who also suffered the same fate, as well as Parkinsons. Gut wrenching stuff.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  6. mara (744 comments) says:

    Being involved, I have to say, thank you John.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  7. DJP6-25 (1,295 comments) says:

    Thanks for this John. All the best in Oz.

    cheers

    David Prosser

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  8. Shunda barunda (2,965 comments) says:

    My Nana died recently with dementia, she was in a rest home in Christchurch. When the Christchurch earthquakes were at their worst she thought it was world war 2! I am told she actually found the whole thing rather exciting, she never experienced bombing in WW2 so I’m not sure what that was about.

    She didn’t remember me or most of my family for quite a few years before her death, it was a shame because I couldn’t explain that the children with me were actually her great grandchildren.

    Still, occasionally she would seemingly snap out of it, especially with my father around. This was often quite funny because she had a very dry sense of humor and more often than not she would snap out of it by cracking a joke.

    She made it to 94 years.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  9. Steve (North Shore) (4,517 comments) says:

    Thankyou John for the guest post, and thanks to this Blog

    I too will face this soon, Father departed when he was 67 but now I have Mother (80) and Mother in Law (84). Both of them retiring mentaly. I spend as much time as I can with them

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  10. the conservative (59 comments) says:

    John, I really feel what you are saying about your mother. My mother had Parkinson’s disease but can you compare?

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  11. cha (3,826 comments) says:

    Bitter selfish people tend to become a problem when dementia sets in, and some men can become lecherous.

    I did some work in a secure unit for dementia patients so could you explain why the lecherous octogenarian nun groped me every time she saw me.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  12. Nostalgia-NZ (4,987 comments) says:

    It’s hard to divorce the attributes of the dementia from the person at times, particularly for family. Well, that was my experience anyway.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  13. iMP (2,304 comments) says:

    Cha, she probably made a habit of it.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  14. cha (3,826 comments) says:

    Habit!. She’d run around the place in nappies naked from the shoulders down with her nun gear thrown over her head.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  15. Deborah (156 comments) says:

    Thank you for sharing this story, John. I hope that I can do this well with my parents if this day comes.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  16. Dazzaman (1,129 comments) says:

    My old man went down hill pretty fast after being diagnosed with Alzheimers. I couldn’t say his personality changed at all, he was still grumpy & calm all at the same time though would often get himself lost due to wandering off to the Cossie club to have a handle or two. It became an occasional occurence to have the Cossie club van deliver him back…seemed to be the only place he could remember to get to! He would often ask me what my name was, I’d tell him, he’d go, “Oh, that’s right”.

    Lot of laughs from us offspring about those sorts of episodes, not a lot of heart break actually, that’s life & you tend to roll with it.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  17. Longknives (4,624 comments) says:

    Very sad, I have a family member suffering from this awful illness.
    Which is probably why my stomach churns every time I see that god awful TV commercial where Canterbury University claim that learning ‘Te Reo’ will cure alzheimers…
    Fucking offensive, Pig ignorant cocksuckers. Now that’s a commercial that should be taken off the air…

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  18. Jimmy Smits (246 comments) says:

    Aredhel777 (211) Says:
    October 27th, 2012 at 5:06 pm

    And yet abortion on the other hand is wrong because the children haven’t developed sentience? (aimed at DPF.)

    Aredhel777 – what is your personal e-mail address? I wish to write to you privately regarding this matter so as to keep it out of this thread. Surely, as a Christian, if your mother just died, would you recognise how insensitive, crass and reprehensible it would be for someone to come to her funeral and publicly talk about how the Iraqi war is wrong (claiming to be directed at the pastor there who is a Bush supporter but only subtly because what they really want is a podium to spout their political views) because innocent civilians are killed? What makes this situation different?

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  19. petal (705 comments) says:

    Thank you John.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  20. David in Chch (510 comments) says:

    Thank you, too, John. My family are still in Canada, where my mother is under professional care. My father and sister visit her every weekday. My father likens it to watching her die a little bit each day. She is disappearing, yet he cannot mourn her, because the outer shell still lives. But the person he married, the woman he has loved for over 60 years, isn’t there anymore.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  21. wreck1080 (3,784 comments) says:

    Nostalgia-NZ :It’s hard to divorce the attributes of the dementia from the person at times, particularly for family. Well, that was my experience anyway.

    My experience too . I was frustrated with the declining reasoning ability. They say such silly things it can annoy you but it is the disease not the person.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  22. Aredhel777 (279 comments) says:

    You’ve started a thread about the value of life where you have implicitly accepted that euthanasia is wrong, and you’re going to penalise me for starting a discussion on it? If I’d started to make comments on Labour or National’s policies and used this thread for political grandstanding, you’d have a point, but that’s not what I did (actually, I’m apolitical.) You’re too quick to come to conclusions about others, DPF.

    Jimmy Smits, my gaming email address is qirit@hotmail.com. If you are simply going to email me to tell me what a terrible person I am then please don’t bother.

    John Stringer, if you are genuinely offended by anything I said, I apologise. That was not my intention.

    [DPF: 20 more demerits. You are a slow learner. If you are incapable of working out which threads are political, and which are not, then again go elsewhere. A five year old should be able to work it out.

    You, and others, try to turn every thread into an abortion debate. Well go do it on your own blog. Otherwise do it on Kiwiblog when the thread is about abortion, or in general debate. But stop polluting other threads or again go away]

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote
  23. ChardonnayGuy (1,169 comments) says:

    John Stringer, while we have profound differences on some other issues, I was deeply moved by your heartfelt and honest account here. My own paternal grandmother experienced Alzheimers and it nearly killed my parents looking after her as her mental health and behaviour declined precipitiously. As much as my dad wanted to be a caring son, in the end he had to have my grandmother placed in a nursing home, given that she was talking about harming both my parents. Once there, she received love, support and care from the staff at the nursing home in question. Thank you for your story and I wish you and your mother well.

    Vote: Thumb up 0 Thumb down 0 You need to be logged in to vote

Leave a Reply

You must be logged in to post a comment.