jmgoyder

wings and things

Dementia dilemmas

We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.

Anthony: Why?

Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!

Anthony: You’re not so bad yourself.

Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!

Anthony: Well I wouldn’t go that far, Jules.

Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.

But this afternoon, we had a completely different kind of conversation:

Anthony: Okay, let’s go.

Me: Where?

Anthony: I want to go home to see Mum.

Me: But she isn’t there, Ants.

Anthony: Where is she?

Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).

Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]

Me: I think they’ve gone out for lunch.

Anthony: Well we can join them and then go to the farm.

Me [grasping for straws]: But what if the doctor comes?

Anthony: You always do this.

At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.

While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….

Anthony: Hey, hey [squeezing my hand harder]

Me [looking at him in mock annoyance]: What now!

Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?

Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.

The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.

Anthony: Thank you for telling me, Jules.

Me: Are you okay, Ants?

Anthony: Not really.

Me: What can I do?

Anthony: Can you just take me to the farm – my farm?

Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.

Anthony: You always say tomorrow.

Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!

Anthony: But I’m getting better every day. Why don’t you believe me?

Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?

Anthony: Don’t cry, Jules….

It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.

On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.

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Dementia dialogues 12

Anthony: How do you always find me? It’s remarkable!

Me: I have a really good map, and a really good memory.

Anthony: You look beautiful.

Me: Wow, thanks, Ants! You look good too.

Anthony: I need to get rid of this moustache.

Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.

Anthony: So what do I have?

Me: Well, you have a lack of moustache I guess….

Anthony: Mmm.

Me: Could we resume this discussion tomorrow?

Anthony: Yes, just bring chocolate.

 

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Green juice adventures

I am a lover of green juice – a devotee, a fan, an advocate! The idea of green juice is what wakes me up in the morning, what keeps me going during the day and what EXHAUSTS me in the afternoon/early evening. Why the latter? Because I make it myself.

Let me explain the process in detail. I’ll even include a timeline.

3pm: Go out to your luscious vegetable garden and try to ignore the 35 degree heat.

3.05pm: Go back to the house to get a hat, a sweat band, and a container into which you can place your freshly harvested greens, and try to ignore the flies in your nostrils, the ants between your toes, and the possibility of a snake in your vegetable forest.

3.10pm: Once you have found your garden scissors (this may take awhile, so try to remember to remind yourself to always put them in the same place so that you don’t have to dig the entire garden up looking for them), begin to harvest your amazing produce.

3.30pm: Try not be too alarmed by the fact that all of your spinach and all of your celery plants have somehow become trees. This is because you haven’t been out to the garden for some time, but don’t feel guilty; after all, it’s hot, dirty and insecty out there. Just cut a few branches off the spinach and celery trees.

4.15pm: Take your container of beautiful green vegetables to the wash house and plunge them into a sink of cold water. If they won’t all fit, take some of the smaller greens into the kitchen and do the same. Have a little rest.

4.30pm: Cut up some apples and carrots and a bit of ginger. Put these into a big bowl with the washed greens from the kitchen sink. Make sure your wonderful cold press juicer is responding to electricity and BEGIN juicing!

5pm: Don’t be upset if you forgot to change out of your white shirt; green is a lovely colour!

5.05pm: Pour the results of this exciting process into the bottles you have waiting-and-ready for the wonderfulness of this green juice and put them straight into the refrigerator. Try not to think about the recent theory that if you don’t drink freshly pressed juice immediately, it won’t ‘work’. Allow yourself a few sips of the elixir and feel the surge of energy this provides you with. You will need this energy because now you have to clean the juicer.

6pm: Now that you have washed and rinsed the many parts of the amazing juicer you bought online, have a little rest again. You may indulge in a little green juice (delicious!)

6.30pm: If you are struggling to reassemble the juicer for tomorrow, you may open a bottle of wine. A single glass of this kind of juice can help immensely as you perform this semi-final task. Try not to panic if the top bit doesn’t quite screw into the middle bit of the bottom bit of the juicer. Instead, use this experience as a kind of meditation. If moments become minutes and minutes become, well, hours, you can either call on someone to help you, or just do that whole breathing thing until the juicer is ready for use again. Do NOT swear at the various parts of the juicer that won’t cooperate immediately; do NOT send an angry email to the manufacturers (because they did their very best and, after all, this is a very superior juicer); and, above all, do not give up on loving the green juice!

7pm: The last stage of this green juice adventure is the most challenging; force your son and husband to drink it. If your son says that there is a bit of grit in it, just smile calmly; if your husband spits it out, try not to be offended. You did your best.

And all of that leftover green juice is yours!

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How to have an amazing conversation with your 22-year-old son.

Listen.

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Nursing home thoughts 2

I was reading a novel the other day in which a nursing home was described as a “dumping ground”. It wasn’t the author of the novel who said this; it was her prissy main character.

I felt as if I had been slapped in the face.

Nursing homes are not dumping grounds! And yet this seems to be a common misperception, often accompanied by barely disguised expressions of absolute horror.

Nursing homes are not houses of horror!

When I recently bumped into an old friend and told her that Anthony was in a nursing home, she reacted with as much distress as if I had told her he’d died.

Okay so the nursing home decision is a last resort and I well remember how the three of us (Anthony, Ming, me) struggled with that decision. It was a mutual decision, hastened by Ming being scheduled for major spinal surgery (scoliosis) on Valentine’s Day that year. I had arranged two weeks of respite accomodation for Anthony at the nursing home while Ming and I headed up to Perth. Long story short, we got back and were told we could have the nursing home room permanently.

Now that decision was horrific – not because I/we had a horror of nursing homes per se, but because of the unexpectedly quick separation. If you don’t take an available room in a nursing home, you might be waiting months if not years, so we said yes. Much of that first year of Anthony living in the nursing home is a blur to me now but my mother tells me I wore the same brown coat day after day, week after week, month after month, and cried all the time. I know I must have blogged about it but I don’t want to re-read those posts at the moment.

Neither do I want to admit the relief I felt at the time but I have to admit it now because I still feel that sense of relief every time I see Anthony. Why? Because the nursing home decision alleviated all of the physical and emotional stress and exhaustion of caring for him and gave me the freedom to care about him again.

Did I stop loving Anthony during those years before the nursing home? Of course not! Did I stop liking Anthony for wanting to go to the loo a thousand times a night? Yes!

The nursing home decision has, over time, replenished my energy, allowed me a social life with family and friends, given me time to write, enabled me to focus more on our beautiful son, and, importantly, gifted me with the ability to fall in love all over again….

With Anthony.

Nursing homes are not dumping grounds; they are, however, the most unvisited resorts in the world.

 

 

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Spring cleaning

In the nearly 24 years that Anthony and I have been married, many friends and family have commented that coming into this house is like stepping into a time warp. As a newlywed, married to an older man whose mother I had cared for, I didn’t feel the need to alter anything because I already loved it here.

I don’t love it here anymore.

Well that’s what I thought the other day and the thought itself took me by surprise.Then it took me many more days to get that thought comfortable in its own words. But uttering those words took courage.

“I don’t love it here anymore, Ming.”

“Nobody comes here anymore, Mum.”

“That’s because Anthony isn’t here, Ming.”

“But WE are here, Mum!”

And so we have begun the process of spring cleaning the corners of the house that Anthony will never see again, except in his memory.

Why don’t I bring Anthony home? Because he is mostly immobile. Because it might break his heart to come home and then have to go back. Because it would confuse him terribly. Because he thinks his mother is still here. Because of ablutionary issues. Because, despite having lost so much weight, he is too heavy. Because I don’t want my already-cracked heart to shatter. Because I love Ming….

This crisis of conscious has catapulted us into re-seeing this little old house as ours or, as Ming put it, “YOURS, Mum!”

I don’t quite know why taking all of those dusty books out of the dusty book case did me in because we organised them into categories: antiques, donations, rubbish. Perhaps it was the delicate scrawly signature of my husband’s 5-year-old self inside an otherwise empty school diary dated 1941.

And then I began to cry.

“I don’t love it here anymore, Ming.”

“You will, Mum.”

Spring cleaning is not for the faint-hearted!

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Agog

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Come on, baby, let’s go!

The other day, Anthony was so wide awake that his eyes were huge. He has big eyes anyway but the unblinking thing that happens with Parkinson’s disease sometimes makes them look enormous.

As I tried to widen my own eyes to match his, my face nose-to-nose with his, I quipped, “What big eyes you have!” But he has long forgotten the fairy-tale response to this and, instead, he fumbled one of his hands out from beneath his knee blanket, took one of my hands, brought it up to his lips, and kissed it.

Anthony: Come on, baby, let’s go.

Me: Okay. Where are we going?

Anthony: Let’s go home.

If only……

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Nursing home thoughts 1

 

One of the things that I most appreciate about the nursing home where Anthony lives is the friendly kindness that so many of the staff extend to me. As I am there so much, I sometimes wonder if my presence may be inconvenient, i.e. when staff need to get Anthony ready for bed. The earlier this happens the better, I imagine, because, as each day wanes, so does Anthony’s mobility, cognition and emotional equilibrium. He can be very stiff and resistant – even when I take a jumper on or off him. Perhaps he even gets feisty but I am confident that the carers know that this is due to the confusion of dementia, and the fear – sometimes terror – that often accompanies “sundowning”.

I don’t know if the hoist still scares the hell out of him but I think it probably does and it is difficult for me not to worry. After all, he once mistook the hoist for a pirate ship and the carers for kidnappers. He still says things like:

Those kids – little bastards – attacked me again, but I fought them off.

So I say things like:

My hero!

Another thing that I appreciate about so many of the staff at the nursing home is humour. One of the carers has a kind of boppy, out-of-left-field humour. She is as quick-witted as she is quick-footed (she always seems to be running) and she can banter with Anthony, nose to nose, until he says “BOO!”

No nursing home is perfect, just as no life is perfect, and, over the nearly five years Anthony has been a resident I have only felt the need to ‘make a fuss’ a couple of times. I think that is pretty good innings actually.

The empathy expressed by so many staff to me (not necessarily in words, often in the curl of a hug, or in the blink of a wink, or in the form of the single smile exchanged in the space of my ordinary day), is my sustenance. Beautiful.

This 80-year-old demented, decrepit, frail, frowning, bony, silent, sleepy, blank-faced man (as I am sure he is often perceived) is still the love of my life.

For those funny, caring, beautiful staff, I cannot thank you enough!

 

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Ming!

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