jmgoyder

wings and things

From listless to listful

Over the last few weeks I have discovered something wonderful about lists. You know, the kinds of lists that read like this:

Monday:
– pay bills
– ride bike
– groceries (don’t forget toilet paper!)
– change bedsheets and do the washing
– vacuum house
– write 1,000 words of new book
– ring plumber
– buy new hoses to replace leaky ones
– see Anthony
– cook a healthy meal
– catch up with other people’s blogs
– wash car
– plan next week with Ming
– ring Mother to arrange lunch
– start new filing system
– get prescriptions from chemist
– book lawnmowing people
– do tax
– return library books
– start taking photos again
– start praying again
– make soup
– make a cake for Anthony and Ming
– go to bed earlier and get up earlier
– do a cull of clothes
– sort out rubbish to take to the dump
– do tomorrow’s list

Okay so, despite the fact that none of the above tasks is, in itself, onerous, it was this kind of list, that rendered me listless. (Interestingly, the word ‘list’ derives from the Middle English word, ‘pleasure’). I would only ever be able to accomplish a few of my listed tasks, I would then feel like a failure….

Eventually, I realized that this kind of list-making was making me extremely unhappy, so much so that I could hardly face each and every day. I resented each and every task I didn’t get done and each and every goal that went by the wayside.

Nevertheless, every night I would make another list for the following day. Energized by a pre-midnight spark of incentive, I would make more do-able lists. But with no job to go to, with no Anthony at home to care for, and with Ming out of school, there was rarely anything on my lists that couldn’t wait, so it felt as if I were continually failing myself.

As a result, the familiar depression curled itself into a small bundle of rock-hard heartburn that only left me alone when I was asleep. So I slept away many days in June until, on the 29th, I woke up with a new idea; I would write my daily lists differently; I would write them backwards instead of forwards; I would write what I had done every day instead of what I should do.

Monday:
– paid all of the bills
– communed with dogs
– did all folding and put a load of washing on
– cleaned kitchen meticulously
– made a cake!
– saw Anthony from 1 – 4.30
– bought a bunch of coriander for the first time in my life
– made a curry from scratch
– washed hair
– communed with birds
– watched a show with Ming
– began reading a library book

To have done even some of the things I had listed as to-do for weeks (but not done), catapulted me out of my fug and into a fantastically different way of seeing each day. Now, with my listful notebook always handy, I list every single little thing I do on every single day – everything from washing my hair to planting strawberries; everything from poaching eggs to making friends with a new resident at the nursing home; everything from catching up with long-lost relatives to picking camellias for Anthony’s room.

This new listful method has also evolved into a better daily routine whereby I am in the nursing home every afternoon, seeing Anthony, doing the volunteering, seeing Anthony again and usually getting home by 6pm.

It is so wonderful to NOT be listless!

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Volunteering 2

Ev, the Events Coordinator at Anthony’s nursing home, doesn’t work on the weekends usually, so I asked her if I could do some of my volunteer work in the Dementia wing and she said yes! She told me that they have activities between 3 and 6pm and I could join in any time, so today I had my first taste of what this would be like. I knocked on the main door (it’s a locked section) and I got a nice surprise when the staff member who opened the door was Jill, who I already know because she brings three women residents for a walk around the nursing home every day at about 3pm and they pass by Anthony’s room where we all exchange waves and hellos. Once I explained I was now a volunteer, she was delighted and asked me to come for the walk. I was thrilled.

Jill always holds 91-year-old Wilma’s hand as they walk; Beryl (80s) usually walks by herself; and Meg (80s) holds her daughter, Cheryl’s hand. All three women residents are extremely mobile, cheerful and vocal (including singing as they walk) and all three also have dementia. Towards the end of the walk, Beryl put her left hand lightly around my right elbow and I felt a pang of joy as she asked me again what my name was. Back in the dementia wing, we all sat outside in a lovely patio and Jill organised some memory games. At 4pm, my hour was up so I excused myself and thanked the staff and residents for having me. Beryl squeezed my hand and said goodbye.

On the way back to Anthony’s section of the nursing home, I felt a sense of happy nostalgia for the years I worked in nursing homes, the years I wrote about dementia in my PhD and a subsequent book. I also felt a bit of melancholy nostalgia for the years of writing during which Anthony would help me fine-tune my argument which was about the importance of listening to, and conversing with, people with dementia, regardless of how the conversation might meander between memory, fantasy, lucidity, sense and nonsense.

It was amazing today to see staff and residents so compatible and cheerful but what really got to me was the mutual respect shown. I worked in several nursing homes in the late 1980s to 1990s and I never once saw what I saw today: staff and residents having fun together in a prolonged way!

Rushing into Anthony’s room so I could tell him all about it, I found him still asleep in his chair the way I’d left him an hour previous. I sat down in the chair I always position next to his and put a favourite DVD of ours into the player I only bought a few days ago The IT Crowd. Ants kept sleeping while I watched a few episodes but, every time I guffawed, he would open his eyes and smile, then tell me to turn the hoses off.

[To blog-friends, I’ve decided to post on weekends and do comments and read blogs during week now. I feel a bit out of touch!]

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Volunteering 1

It has taken several weeks to sort out the red tape of me volunteering at Anthony’s nursing home. Okay, let me explain: I will now get paid a small allowance if I do 15 hours of volunteer work per week at a not-for-profit organization.

As it happens, Anthony’s nursing home is not-for-profit so last week the Events Coordinator, Ev, showed me the ropes and suggested things like playing cards with Nat, an 83-year-old woman with Parkinson’s Disease and numerous other afflictions, who is in a wheelchair. Then Ev said, “You can always bring Anthony to sit and watch.” My heart did a somersault.

Well, since I already know Nat, it wasn’t exactly difficult to break the ice on Monday, but I was still nervous. I got to the nursing home before noon and helped Ants with his lunch and explained the volunteer thing then I left my bag and scarf in his room, so he would know I was coming back. Then I went to find Ev who wheeled Nat up to the dining room so we could sit at a table for the most complicated card game I have ever played! [more about that tomorrow]

Nat: At a loose end are you, love?
Me: No! I’ve become a volunteer here and you are my first victim, Nat.

Nat cracked up laughing. She is quite famous for her huge, loud, beautiful laugh. Then she said, “Go and get Anthony.”

So I did.

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My second home

Anthony

In my last post, I wrote a bit about how, instead of taking Anthony out for drives or bringing him home for the day, I have begun to make myself home in his room in the nursing home. For those who don’t know, Ants has advanced Parkinson’s disease with encroaching dementia, advanced prostate cancer and several other conditions. He is 78 and has been in the nursing home for nearly two and a half years. I have already blogged about the heartbreak of that mutual decision, and written about the ongoing ups and downs since then.

Several weeks ago, I realized that I had to stop getting Anthony up and out, and back home, and visiting friends and relatives, and going to restaurants etc. because I could no longer lift him in and out of the car, wheelchair etc. Well I could actually, but the physical strain and emotional stress of all of this maneuvering was taxing for both of us, and Ming too of course.

You see, all of the above jobs were infused with a panicky anxiety. Will the pills work today? What if I can’t get Ants to the toilet in time? Will he try to walk around the farm/restaurant and fall again? What if I have to get the ambulance out to the farm? Will he be too cold and insist that every heater is on? Will Ming cope? Will I cope? Will Anthony cope with going back to the nursing home after being out and about? Will there be more tears than we have already cried?

So, almost as an experiment I guess, I began to spend more time in the nursing home, something I couldn’t have done even a year ago – too boring, too sad, too scary, too confined, too uncertain – I hated it. But gradually, over many weeks now, this has become the norm and the fact that I am spending several hours a day with Ants in the nursing home means that he is no longer so desperate to come home and often, by late afternoon, he thinks he is home.

I keep long-lasting stuff, wine and snacks in one of Anthony’s cupboards, bring a favourite food every day (blue cheese, chocolate, olives etc.) and sometimes it’s a little bit like a party. If the heater isn’t on, I turn it on, put a blanket on Anthony’s legs and do up his jacket up (he is always cold). Then I turn the television on to whatever our program is for the day (Master Chef, Midsomer Murders, Neighours). During the commercial breaks, I mute the TV so we can talk but lately Ants is having a bit of trouble with speech so I have to help a bit. Yesterday he couldn’t get the sentence he wanted to say out so I told him I could read his mind and not to worry. And I can read his mind.

But then his words came out:

ANTS: You make me nervous, Jules.
ME: Why?
ANTS: I’ve fallen in love with you again.
ME: Hell, Ants, we’ve already done that!

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Smiling

This afternoon Anthony was, as is usual now, in his armchair in his room at the nursing home and a bit confused. I put the heater on, zipped up his jacket, put a rug from home on him and changed the TV station to “Neighbours”. Anthony’s hands were cold, so I took the heat bag my friend Jen made and microwaved it for 4 minutes in the kitchen (staff let me come and go from kitchen area now), took it back and put it on his lap, placed his hands on it and put the rug on top.

Anthony was really drowsy – has been all week – but at one point I was able to rouse him (by punching him gently in the shoulder). His eyes were blank until they met mine and I said, “Ants, I love you more than anyone in the world.” Suddenly my eyes filled up with tears.

There wasn’t much response so I tried again, more shoutingly, “Anthony, I just told you that I love you more than anyone in the world, and my eyes filled with tears, and you ignored me!”

Anthony looked into my wet eyes, and his drooping mouth (caused by Parkinson’s disease) curved upwards into a smile. I realize that doesn’t sound like much but to get a smile from this previously jovial person who is now so disabled, is a small miracle. The only thing that annoys me about this smiling scenario is that I have to work very hard to get a smile out of Anthony whereas Ming just has to walk into his room and shake his hand and – BINGO – Anthony smiles – grr!

I’m so grateful for the decades of smiling we did before smiling became an effort for Anthony – not because of sadness but because of how PD affects the muscles of the face. So nowadays I come into his room with a huge smile every single day.

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Monday 9th June 2014

Today I went into town just after lunch to spend the afternoon with Anthony at the nursing home. This has become the ‘norm’ now because a few weeks ago it just became too difficult to take him out and about or to the farm on a regular basis because of mobility problems. Over the last several days Ants has been quite content to just have me in a chair next to him with my arm around him, watching Judge Judy, Dr Phil and, if we are lucky, a good afternoon movie.

I usually stay from around 1.30 – 4.30pm (my new routine) and it beats the hell out of my old routine of taking Anthony on outings, or home, then being unable to manage. Even at the nursing home, I have been told not to lift, move, or even shift him in his chair, because he is now strictly classified as a 2-person lift.

This afternoon I entered Anthony’s room with wine and olives and my usual ‘goodies’ and he was asleep in his armchair. Usually I wake him up, but he looked too peaceful so I just sat next to him and quietly ate all of the olives. Suddenly a nurse entered the room to take his blood pressure because he had been asleep all day. He woke up but only slightly and the nurse and I struggled to get one of his arms free from his jumper because he was so limp and ‘out-of-it’. Well his BP was 190/110 – very high. This, and the fact that I couldn’t really wake him up enough to say goodbye when I left to go home, alarmed me a bit.

On the way back home to the farm, I allowed myself to think that Anthony might be dying. But my thinking of this possibility could not translate into a coherent thought because I cannot imagine him not being here. Despite the difficulties of home nursing, the transition to a nursing home, and all of the mini-traumas in between, I have not yet been able to imagine life without Anthony in it.

My father, Brin, died of a heart attack on this day, 36 years ago. He was only in his 50s.

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Resting

I’ve had a wonderful rest from blogging (as in NOT reading, writing, commenting, replying) and, despite the inevitable guilt, it has been great to concentrate on other things.

Like my navel!

IMG_0069

That’s Gutsy9 by the way.

Life here has become too busy to sustain blogging every day so I’ve decided to post once a week instead of once a day. Again, I really appreciate the support and friendships formed with other bloggers but I simply can’t keep up.

I think, too, I have oversubscribed to blogs in general and, especially to those that deal with grief. The kinship and support exchanged with those bloggers continues to sustain me but also makes me sad. I can hardly cope with my own sorrow about Anthony, so reading about the grief of others is very hard – too hard for me at the moment. For those of you who I have become close to, we have each others’ emails so we can still keep in touch. Please feel free to email me on juligoyder@gmail.com

Years ago, when Anthony was younger and still milking his cows, he would have a mini-rest after lunch and that would sustain him for the afternoon ‘shift’. He would have a solid sleep for around ten minutes then get up again, full of energy!

The memories, all mish-mashed now into the present, are sometimes heartbreaking for me, but not for him, thank God. He is okay; my husband is okay; he is being well looked after in the nursing home; he is warm; when he is confused, the nurses reassure him. And tomorrow, I will go in and stay with him for the afternoon and ask him if it is okay if I lie on his bed while we watch TV ….

Resting.

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Holiday

Ever since I began blogging, in November, 2011 (I had to go back to find this!) I have been amazed by the generosity of strangers, the friendships formed by commonalities, and the understanding when certain bloggers, like myself, just can’t keep up with those amazing, yet tenuous, friendships.

The fact that WordPress has gone a bit AWOL in terms of this blog (yes, I have contacted the Happiness engineer people) has actually given me time to reflect on what I really want to do here, on this blog:

1. Reading: Keep in better touch with blog friends, but don’t feel guilty if you can’t.
2. Writing: KISS (keep-it-simple-stupid!) – also, keep it short.
3. Photography: Learn from others.
4. Personal: If you are having a difficult time with the whole life thing, and you can’t blog, that is absolutely fine.

I so appreciate all of the blog support I have received from friends, relatives, bloggers and family, but I just cannot keep up at the moment and feeling bad not to have even answered comments! So yet another blog break is in order, so I can spend more time with Anthony and write my soon-to-be famous novel ha!

Nothing dramatic – just a little blog holiday.

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A bit like the weather

At the nursing home, Anthony was up and about this afternoon at about the same time he was in bed yesterday. He was lucid, mobile, vocal and quite jaunty.

To me, Dementia resembles the unpredictability of the weather, about which you can do nothing. The other day, a tree was uprooted and fell down during a storm; the next day it poured with rain; the next day it was bright sunshine; and today it is a bit of both.

There is nothing anyone can do about weather fluctuations – nothing. Forecasts can be wrong and often the weather will change drastically from what was expected to something totally different. A storm may shove a sunny day aside and vice versa. And there is nothing you can do about it. Nothing.

Dementia is like this in so many ways. One day, at exactly 10am, Anthony might be able to answer the phone and have a coherent conversation with me; the next day he might be unable to do either. Despite the careful timing of his PDD medications (just like I used to do at home), sometimes he has a huge appetite and other times he has forgotten how to eat. Sometimes he can almost run, using his walker and other times he can’t even take a single step and we have to get the wheelchair.

With over ten years of nursing experience up my sleeve, and a PhD about Alzheimer’s Disease, you would think that I’d have more understanding of the kind of nuances that occur when Dementia has climbed onto the back of another disease like Anthony’s Parkinson’s. And yet, every day is a surprise for me – sometime wonderful, sometimes awful, and sometimes in-between … a bit like the weather.

So what do you do when the weather isn’t what you expected?
You accept it of course, because you have no choice.

[Note to blogger friends: I am still not receiving email notifications of your posts so have been using the WP Reader. This is a much better way for me for the time being but I am not keeping up with you all and I apologize].

20 Comments »

Parkinson’s Disease Dementia and FEAR

I don’t think many people recognize, and acknowledge, the kind of fear that a person with any kind of dementia can experience. Anthony has PDD but can still vocalize his fears, especially after the sun goes down (Sundowner’s syndrome).

About 15 minutes ago, I rang him on his new phone and he actually picked up (doesn’t always remember how) and he was frightened and utterly delusional, thinking that he was at his brother’s house and that a storm had destroyed it, and asking me to come and rescue him. His words were garbled and frantic. I tried to calm him down, then told him I would ring the nurse but he said I wouldn’t be able to get hold of a nurse because of all the workmen were around and it was dangerous.

So then I rang the nurse and told her and she said she would go and check on him and get back to me. There is now an anti-anxiety drug that has been prescribed for these occasions so I reminded her of that.

Now I am waiting for her phone-call. As I wait, I think, with great distress, about how, from time to time, Anthony becomes absolutely terrified at night. PDD and, paradoxically, some of the medications used to treat it, can cause hallucinations, paranoia, confusion of space and time, and fear.

Anthony’s bouts of terror usually only last about half an hour which is the same amount of time it would take me to drive into town and ‘rescue’ him.

When is scared like this, he becomes more articulate despite the fact that what he describes isn’t real. Very soon, I think, he will not be able to talk at all, so it is very important for me that I understand his fear, and try to reassure him. I was in this afternoon, seeing him, and there was no indication he might have one of these ‘episodes’ despite the fact that he was very confused.

I am not just spilling my guts here – I am also saying that if your loved one has dementia but has ceased to speak, they might have the FEAR thing too so your voice on a phone, your visit, your touch, a hug, a cake, a blanket or a cup of tea might just alleviate that.

My heart breaks for those suffering this kind of fear in silence. I just spoke to the nurse and Anthony is apparently okay again and he is being put to bed but what if he is still really afraid? I am so worried, but I won’t be able to see Ants until tomorrow morning by which time he may have forgotten the fear. Oh I hope so.

He is, and always will be, my hero.

[ps. not keeping up with other blogs atm – sorry]

27 Comments »