Alzheimer’s Disease | jmgoyder

The loop of loss and longing

by jmgoyder

Tonight I came home from my shift at the nursing home (which is now from 3-7pm) feeling terribly sad for one of the residents, B. She had been taken out by her daughter for fish and chips with some of her family but when she and her daughter returned, they were finishing a conversation which must have begun on the drive back and B, referring to her deceased husband, was saying things like, “So R is gone is he? I see … And I can stay here can I?” The grief and confusion in her beautiful face was a stark, mottled blush and her eyes seemed to be looking inward, grappling with the enormity of her bereavement. We – the staff – sat her down and reassured her and her daughter left.

I was already sitting at a table with two other residents, looking at magazines and a bird book, so B made a fourth. She was uncharacteristically quiet and still. I gave her a magazine, a hug and a cup of tea and she eventually said, “It’s hard when you lose someone and you’re all alone.” I squeezed her hand and said, “I know how it feels a bit, B, because my husband is in a nursing home.” With that she looked at me with eyes full of empathy and she enclosed my hand in both of hers. “I’m so sorry darling, that must be terrible for you.” Her sympathy amazed me since she had just heard about her husband’s death for the first time (of course it is not the first time in reality) and she seemed to be in a bit of shock.

But, less than 15 minutes later, as B finished her cup of tea, she asked the same questions she asks over and over and over again, “Do you know where is R? I need to be getting home. Can you give me a ride? He’ll be getting worried won’t he?”

Most staff go with the flow and reassure B that R will be here soon, or that he said it’s okay for her to stay here for the night. It is sometimes very hard to know what to do to comfort B because she is constantly on the move, ready to go home. She is mobile, articulate and always immaculate, but so terribly confused and anxious. A couple of the staff will gently remind B that her husband isn’t here anymore and she will be shocked and grief-stricken but within minutes will have forgotten this and will begin again to ask where R is.

I wish I could figure out how better to comfort this woman who constantly asks for her deceased husband; it’s as if she is stuck in a never-ending memory loop of loss and of longing.

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Miscellaneous

by jmgoyder

One of the things I have had to do in all of the recent decluttering is to toss some things into a miscellaneous box to be figured out at a later date. Despite the fact that this box is getting rather full it is good to know that I have one place to put anything that I don’t recognise. I will hold the object out to Dina and say, “Do you know what this is?” (Usually it’s some sort of ancient tool – an artefact from Anthony’s past). If neither of us can figure it out, it goes into the miscellaneous box – perfect. Then it’s over to ‘the Ming’.

I thought it might be quite fitting to write a bit of a miscellaneous post, having discovered that ‘miscellaneous’ is a definite, and quite acceptable, category. So here goes:

Most of the grapes are ripe now and I can just pick them and eat them whenever I go outside. I think it’s just the one vine and the wild birds get to them as fast as I can so there is almost no point picking them. They grow just outside the back door and I’m not sure if Anthony planted them or if they were there before the family came here.

The figs are nearly finished for the year as the heat is getting the better of them – and the butcher birds (which Gar, Anthony’s mother, used to hate). Last year I just let most of them fall of the tree and frizzle in the sun but this year I have given many bags away to friends, family, the local pub, the restaurant where Ming works (my mother and I went there today for lunch and the fig and coconut muffins were a hit), neighbours etc. I have also eaten quite a few with Ants in the nursing home. I also went to another restaurant and asked if they wanted figs and they said YES and I asked what I would get in exchange, suggesting a lunch voucher and they said yes to that too, though a little less enthusiastically.

After lunch with my mother today I went in to the nursing home to spend some time with Ants before my 3 – 7pm shift in the dementia house. I had my camera with me so took some photos through his window of the outlook from his room. This garden area – one of many – is where he often ‘sees’ calves and often asks me to go out and check if they are all okay, which of course I always do and the calves are always okay.

Periodically, I rearrange or change the pictures on his walls. The photo of younger Anthony has pride of place very high on one wall where there happened to be a hook and he rather likes looking up at himself!

Me: You really like looking at yourself don’t you! Such vanity, Ants.

Ants: Men need to love themselves.

Me: Why?

Ants: In case nobody else does.

Okay I am kind of cheating here as the above conversation happened over a year ago. Ants doesn’t articulate so well anymore but he sure as hell likes looking at the photo and so do I. It kind of pulls us both into the time warp of when we first met.

Then there is the oil painting of cattle that I commissioned from an artist friend years ago; a calendar my mother made of moments/months in our lives (e.g.. Ming recovering from his first spinal surgery); and one of the few photos of Anthony and his mother in her latter years, that I had framed for him once upon a time.

Then I took a picture of the rose plant I gave Ants not long ago. Everybody has remarked on their blooms and many people, including Anthony, thought they were real until I finally had to own up to the fact that they were VERY expensive fake roses made of silk. Some people are still fooled though, especially when I spray them with rose perfume – haha!

Well now that all of the ancient rose trees on the driveway of the farm are either dead or dying, the fake rose tree seemed like a good idea. In my defence, I am hopeless at gardening and every time I water something the pump makes the electricity bill soar!

Just before 3pm, after watching Judging Amy with Ants, I went into his bathroom and quickly changed out of my t-shirt into my new uniform, put my name tag on and explained I was going to work. He always only remembers a bit of this new situation so I have to explain again that I am not going somewhere else but will be working just next door and that I might be able to see him a couple of times during my shift. This reassures him and whenever he gets anxious I just tease and tickle him into his new half-smile and all is well.

This afternoon it was a bit too humid to take many people for a walk outside or through the complex and it wasn’t until I took a teary S for a wheelchair walk that I saw Ants again (just as I saw many of the people in the high-care section as S and I did a lap of the gardens and hallways).

S. Who’s that old chap?

Me: My husband.

S. Not bad-looking!

Me: Keep your hands off him, S!

S. (chuckling and sticking her tongue out at me) All right.

Miscellaneous….

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Feb 16

Dreams
by jmgoyder

I have various versions of the same dream once or twice a week. In the dream Ants and I are on a holiday somewhere, a long way from home, and a long way from the nursing home. We are either at some sort of luxurious resort or at a wedding, and familiar family faces come and go from each dream version. Everyone is always aware that Anthony is very ill and often he is in a wheelchair. The strange thing about this dream is that its evening is suddenly punctuated by the horrifying fact that I have forgotten to bring his many pills and it’s too late, and too far, to go back and get them. But then an even stranger thing happens. He gets up from the wheelchair and walks around talking and laughing and socialising and I realise he doesn’t need the pills! Another recurring dream I have is that we are on the brink of getting married but he gets cold feet and the wedding is called off and I am broken-hearted. Whenever I wake up from this dream I am filled with relief that it was just a dream but then I look over to his side of the bed and am hit with the jolt of his absence. On these days I usually go into the nursing home earlier than usual. This morning Dina (my decluttering friend) and I cleared our fourth room – a little room at the back of the house that I once used as an office. It was filled with books, papers, some of Ming’s ‘stuff’ (which seems to be in EVERY room!) and I didn’t think we’d even get to the filing cabinet which was also full of bits and pieces. But we did! All legal documents are now in one place; jewellery in another; photos in another; and Ming’s bits and pieces in another, ready for him to sort out with the help of Dina. Now a little myth I need to dispel: Dina does not chuck stuff out; she simply hands it to me and I make the decision as to whether it’s worth keeping or chucking. And I am getting very good at chucking! Periodically she asks (she is so considerate!) if I am okay which is a fair enough question as some of the bits and pieces we find plunge me into a kind of nostalgia, but it’s mostly a happy nostalgia. If it isn’t, it goes in the rubbish bag – wonderful! As we declutter, categorize and cull, my mind unfurls its tightly-wrapped knots of confusion and clarity seeps back in.

Interestingly, I now have another recurring dream. In this dream, the house returns to the way it was before Anthony became so ill: spotlessly clean, tidy, organised and beautiful. But, for the first time ever, it will be my house too – less cluttered with ornaments and free of hoardings. I could never do this kind of thing when Anthony was home because he was sentimental about everything, even his father’s old dressing gown! And he wouldn’t like what is happening now but he doesn’t know so it doesn’t hurt him. I would never hurt him. And, thanks to Dina, this dream is coming true.

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Feb 10

From panic to pause….
by jmgoyder

For the last few months I have spent a lot of days with Ants in his room at the nursing home, just watching dvd series like Downton Abbey; The Bridge etc. Ants loves anything that has an historical slant so this has been a great way of spending time together.

However, some of these movie afternoons are interrupted by staff performing ablutionary tasks, or simply moving Ants from a wheelchair into the easy chair. These interruptions are sometimes difficult and complicated, but Ants is treated with respect and, often, affection. Phew!

If I am there, one of the things I do immediately is to mute the television because I have never forgotten how one of Anthony’s many doctors explained to me that people with PD cannot focus on two things at once. So, if carers are trying to get him to stand up, but the TV is blaring news about the latest ghastly situation, he freezes mid-stride, because all of these sensory experiences are crashing into each other and he cannot focus on walking.

Whenever I get a late-night phone call from the nursing home (not very often thank goodness!) the carer will help Ants to talk to me on his own phone (which he very rarely answers now because he has forgotten how), this is how the conversation goes:

Me: Are you okay, Ants?
Ants: When are you coming to get me?
Me: I’ll be there soon, Ants. I love you and you have to stop panicking. It’s all okay and you are in a nursing home with lots of people looking after you!
Ants: But I just want you. When will you be here, Jules?
Me: I’m on my way, Ants- I love you so much!

A couple of years ago I used to race into town to make sure Ants was okay but, after several times of finding him asleep, I stopped panicking, started pausing, and the whole pause thing has somehow killed all of the panic.

So now, when I feel the panic creeping into my scalp, ankles and elbows, I stop everything that is bothering/torturing me and I just PAUSE!

So, despite the new-agey sound of this, there is a pragmatic outcome I think when you put PANIC on hold in order to Pause, you can get a better perspective. I think!

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Feb 8

The thank you thing
by jmgoyder

It struck me this afternoon, during my shift in the dementia house, that people with dementia don’t get thanked very often. After all, they are the recipients of care so are always saying thank you to us (family/friends/staff).

B, who is always wanting to be busy (because she was one of 12 children and their mother was a perfectionist in every way) is constantly anxious and quite bossy to the other residents sometimes. Her agitation is heartbreaking and, as she is extremely mobile and physically fit, she sometimes challenges the patience of staff.

After dinner tonight I threw the old towels I’d brought in the other day onto a table (an idea suggested by another staff member) and B proceeded to fold them all, meticulously. I helped her with a particularly big towel and, once we had finished, I thanked her rather profusely.

Me: Thank you so much, B. I couldn’t have done this without you.
B: Oh darling, anything I can do to help. I was one of 12 and my mother was a hard worker. Everything was starched and cleaned and perfect, washed, ironed, starched. And we had to get the littlies to bed, changing nappies, cooking tea.
Me: I think you must take after your mother, B.
B: Oh no, I could never do what she did. Do you want me to help you with the dinner, love?
Me: I think I can manage tonight, B, you just sit down and I’ll serve the soup.
B: What about this old lady here?
Me: Just keep her company, B!

I probably haven’t written this very coherently but my point is that when I thanked B for helping me with the folding, she looked at me with her beautiful, bewildered expression, then grasped my hand and said, “So what do we do next?”

Me: I thank you, B!

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Feb 7

Mystery solved!
by jmgoyder

The other evening I finished work in the dementia house at 7pm (new schedule) and headed up to Anthony’s room in the high care section to say goodnight. As I am not usually there so late, I was surprised to see that the hoist was in his room and that he didn’t have a shirt on. His dirty shirt was off and his clean shirt was on the side of his armchair so I put the clean shirt on him and chucked the dirty one in the laundry basket in his bathroom. Then I put his favourite blanket on his knees and we had a chat.

Me: How come you didn’t have a shirt on?
Ants: I was in a fight.
Me: Who with?
Ants: Those kids again! They tie me up.
Me: See this thing, Ants? It’s a hoist and the nursing staff need it to lift you up and to get you into bed.

He wasn’t too anxious but I could see that he had been. So I kissed and hugged him and said my usual goodbye of “Just going up to the shop to get something for dinner”, and turned the television onto the news which he loves.

Then I left. Usually I say goodbye to staff who are around but they must have been busy somewhere else so I let myself out and drove home.

The following day, Anthony said, “I have to tell you something” but he couldn’t articulate anything that I could understand to begin with, then ….

Me: Were you in another fight?
Ants: Yes!
Me: What happened?
Ants: Those boys tied me up again.
Me: I’ll go and speak to someone about this, okay? Back in a sec.

I went to the nurse’s station and asked M if there had been an incident last night and she said Anthony had become aggressive towards staff trying to get him ready for bed so they had had to leave him alone for a bit. Then she looked at me, her expression full of compassion.

M: It’s okay, darl, he settled down.
Me: He seems to think he is in some sort of boxing ring every night. He is terrified of the hoist; do you think that’s it?
M: Okay I’ll tell the staff. One thing we couldn’t figure out was how he got into his clean shirt.
Me: Oh I did that on my way out.
M: Well that’s a mystery solved!

The following day, during my time with Ants and then my 3 -7pm shift, a couple of staff approached me about the previous evening’s mystery, i.e. Anthony had become feisty when various different carers tried to get him ready for bed so they had left him alone for awhile. Not long after that, they came back into his room to find him dressed for bed and with the blanket on his knees, and calm. Nobody could understand how this could have happened because nobody had seen me come and go, so it had mystified one and all until I clarified that it was me who put his shirt on!

Since then, numerous staff have told me the mystery story. You see there is no way anymore that Anthony can put his shirt on – no way at all. His Parkinson’s has pretty much shut down that kind of ability.

I guess the best thing about this experience is that I now know for sure that the carers in this nursing home really do care about him, and, now that I am a staff member too, I get told stories of how he is when I am not there.

As one of the carers said to me yesterday, “I knew straight away that it must have been you who put his shirt on.” Then she said, “You know, he is absolutely besotted with you. I tried to flirt with him a bit and he sort of brushed me aside and said that you were the love of his life.”

I think it is delightful that so many staff are still laughing at the mystery of the shirt and, today, I will tell Anthony the story too and he will SMILE. And I will laugh all over again!

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Feb 4

Anthony’s 79th birthday
by jmgoyder

Today is Anthony’s 79th birthday and yesterday I promised him I would take him for a drive down south to Golden Valley, his childhood home in Balingup. He asks to go to Golden Valley much more than he asks to come home here and, as it’s been months since I have taken him for a drive anywhere, except around town, I decided to do it.

I was nervous about our little expedition because it is very hot here at the moment and Ants is really hard to manoeuvre when immobile (which is most of the time now). But at 11am he was able to walk, with his walker, the short distance up the hallway and to the outside front driveway where I bottom-shoved him into the car. This bottom-shoving method is very effective; I just get his right leg into the car while he is standing up clinging to the open car door, then I sort of swing my right hip against his left hip to plonk him into the seat. This is not a method I recommend to care staff, who are not allowed to assist once outside the building anyway, but I don’t have to adhere to the care staff rules when it comes to Anthony because I am not his carer, I am his wife. And he seems to get a bit of a kick out of my rough handling – ha!

An hour and a half later we arrived at his childhood home.

We parked there for awhile and admired the scenery and I asked him questions that he had already answered years ago, like about the hedge that he planted and trimmed obsessively for years. “Looks like someone is doing the same thing,” I remarked but, by this time, Ants was finding it hard to articulate anything and his words were skewed.

Then we drove the short distance to the tree park and he suddenly got a bit excited and mentioned the name of a woman he told me about years ago. She and her brother owned the farm adjacent to Anthony’s parents’ and, as a boy, he used to walk up to visit her. I am going to call her Eleanor for the sake of privacy despite the fact that she probably died years ago. So little-boy Anthony used to walk up the hill to visit in-her-30s Eleanor and she would feed him with home-made cake and sometimes play the piano.

At the tree park, I stopped the car and we admired the view and I said, “She was obviously a wonderful person, Ants” – then, right out of left field, he said “There was no sex.”

Right, okay ….

After that, I asked Ants if he wanted to go to the old pub which has been refurbished and he nodded yes but I could see he was getting very tired. This pub is a place we’ve been to from time to time over the years, but this time I knew I would be unable to get Ants out of the car, let alone into the pub, so I parked the car in a shady spot and ran inside to check it out.

I ordered two light beers and asked if it would be okay for us to drink these in the car because my husband was too disabled to come in. Yes that was fine. Then I asked to see the menu and they had oysters – joy, bliss! So I hurried back to the car with the beers and told Ants about the oysters and went back to order half a dozen.

I had to feed these to him because his hands don’t work very well anymore but he vacuumed them down as you can see! So then I raced back into the pub and ordered another half dozen and the chef delivered them right to the car – amazing!

By this time I could see that Anthony was utterly exhausted and there was still 100 kms to travel back to the nursing home. So I drove with the radio on (Ants loves music) and, periodically, put my non-driving hand into his or around his shoulders. We got back nearly four hours after we’d left and the very thing I’d dreaded happened. Ants couldn’t get out of the car or stand up or speak, so I went inside and got a wheelchair but that was still very difficult. Nevertheless I eventually got him back to his room and asked the care staff if they could attend to him soon. Then I kissed him again and asked if his birthday had been okay.

“Not too bad,” he said.

This photo shows what happens when I ask Ants to smile for the camera – mmmm.

Happy birthday to my beautiful, incorrigible, resilient, fantastic, sarcastic, wonderful husband!

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Jan 29

Small mercies
by jmgoyder

I have just found out that my lifestyle assistant/occupation therapy role in the dementia house of the nursing home where I work part-time will now allow me to feed those residents who can’t feed themselves. I will also be allowed to serve food and drinks (previously a no-no due to the risks of choking/dysphagia) but now that I have seen the training dvd twice, and filled out the dysphagia quiz/questionairre, I am allowed to help, rather than hover, during mealtimes.

Not only that, the three of us who alternate in this role have had our 3-6pm shifts extended by an hour – to 7pm – which is a wonderful idea because it will allow for a more relaxing atmosphere before and after meals.

I am still finding my feet in this job and today I felt a bit at a loss when the wheelchair walking was limited to inside (due to the heat – 36ish) and, after taking F, Y and B through the inside of the complex, from house to house, I came back to find that M’s daughter had begun a very successful table ball game (rolling a plastic ball to and fro).

M’s daughter is really competent with this game thing, whereas I am still a newbie and not very good at playing games, so I am learning a lot from her. She visits her mother every single day at the same time and when I see her I feel relieved to have her bingo expertise!

It is hard sometimes to find ways to provide entertainment because I am pretty hopeless at card games and jigsaws and arts and craft; I much prefer a conversation and today B and I had a hilarious one.

E, the OT boss, says that to be unhurried is good and to go with the flow is even better but it is harder than I thought it would be to just relax into this role. The unpredictability of how each of the ten women feel each day from 3pm is, of course, the governing cue and if someone is anxious she is the first person I comfort either with a hug or a walk or a conversation. Today, S. was, as usual, crying so I said, “C’mon, S, it’s not that bad!” And she looked up at me, bared her teeth and said, “Okay, Mum!” We all laughed – residents and staff.

B said “Told you so” in her droll way, Y said “Leave me aloooooone!” and J, who hardly ever shows any feelings, smiled at me just before I was finally allowed to give her dessert.

Small, wonderful mercies!

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Jan 26

Wheelchair walking
by jmgoyder

My job as ‘lifestyle assistant’ at the nursing home, also shortened to OT (occupational therapist) continues to be thoroughly enjoyable. The shifts are only three hours – from 3 to 6pm and I do an average of six shifts per fortnight so it’s not a lot of work but hopefully I will get more shifts in the future.

The dementia “house” is set up like an open plan house with the kitchen and dining room in the centre, a sitting room with a big television, and ten bedrooms down three hallways, each with its own ensuite. Then there are a couple of separate little sitting areas as well as a lovely patio out the back, with a garden. Seven of the ten women are ambulant, some with walkers and some without, so there is a code to open the doors due to the risk of anyone wandering off.

I have now established a routine whereby I take one or two of the women for a long walk outside around the grounds and in and through the other four houses, all of which are designed in the same way except Anthony’s which is more like a hospital ward. If I come on duty and find anyone already in a wheelchair, I begin with that person and this week I started to take J. by herself because she doesn’t seem to ever have any visitors and, even though she can walk a bit she is difficult to manoeuvre and quite tall, so I use the wheelchair. I don’t think this has been done before because previously the OTs took her on short walks until one of them wrenched her shoulder doing so (J. has a grip of iron!) In the wheelchair it is possible to take her on much longer walks and she seems to really enjoy this although it’s difficult to tell because she doesn’t talk much and even when she does she is hard to understand.

I like to take her by herself for that whole one-to-one thing but sometimes one of the ambulant women comes too. We go out the locked door into the sunshine and gardens then through a small parking lot at the back of the nursing home then inside Anthony’s section which begins with a foyer, then a large activity room, down a very long hallway, saying hello to the residents in the rooms to the left and right (including Anthony of course!) then out to another garden area at the front of the nursing home, up a steep driveway at the top of which you can see the ocean, then left down a road that enters the section where the independent elderly live in self-contained units, all with beautiful gardens, around a roundabout and back to the ocean view. Then we go back down the driveway and into Anthony’s section again, turn right to go through the dining/living area up another hallway and then back down and out into another garden area, then back down Anthony’s hallway, waving to him on the way (which he finds extremely amusing) then, once outside again, instead of turning left which leads back to the dementia house, we turn right and head up the narrow driveway past two other nursing home houses and up a hill to where there are other self-contained units. Sometimes the residents will come out and say hello to us and have a chat; then we turn around and head back to the dementia house. This takes around half an hour. Once back, I pick up F. or O. or D. and begin again. And again, with different people.

One of the things I have found most difficult about these wheelchair walks is walking slowly. It’s like the way you have to walk up the aisle! I am ordinarily a very fast walker but having already frightened the hell out of two women who thought they were about to be catapulted out of their wheelchairs, I now walk extremely slowly in a smell-the-roses way (and there are lots of roses to smell because the gardens are beautifully kept).

With the weather so beautiful lately this seems to me to be the best activity and my goal is to get all ten women out and about during one shift, but so far I have only been able to get seven out and about (yesterday), because dinner is served at 5pm.

The wheelchair walk tends to calm even the most agitated of the women down which is pretty much what I am there for as this time of day is notorious for ‘Sundowner Syndrome’ an anxious time for many people with dementia who may remember it as a busy time of day, getting dinner ready etc. B. who walks without any assistance, becomes increasingly anxious about getting back to cook dinner and when is her husband coming home? S. cries a lot, and O. becomes aggressive. The long, slow wheelchair walk seems to calm these anxieties to some extent and I much prefer doing this than singsongs and card games.

The sunshine, fresh sea breeze, gardens full of late blooms, and interaction with residents and staff outside the dementia house, is, I think, the most beneficial thing I can do in this wonderful role. The fantastically weird conversations we have with each other outside create a rapport and laughter that isn’t as easy inside.

Me: Are you enjoying it out here, S?
S: Not particularly.
Me: (laughing) What?
S: You cheeky man!
Me: I keep telling you I am not a man!
S: Oh, sorry (starts crying)
Me: Stop it – I was only joking. Do you want a hug?
S: Yes, please (we hug).
Me: If you start crying again I will bop you (laughing)
S: I’ll BOP YOU, young fella!

OR:

Me: Do you want to go for a walk, Y?
Y: Leave me alone, leave me alone, leave me alooooooone – doesn’t matter.
Me: Your chariot awaits (pushing wheelchair next to her).
Y: Oh all right, all right, all riiiiiiiiight.
Me: See! Look at all the flowers, Y.
Y: Pretty. Pretty flowers, pretty flooooooowers.

OR:

Me: Do you want to come for a walk, B?
B: Oh I don’t think there’s time. X. will be home for tea soon and where are the boys? What’s the time? Do I need my lippy (lipstick)?
Me: It’s only a short walk and I need you to help me with O. (O. in wheelchair).
B. Well as long as we’re not too long. Have you seen my handbag?
Me: We won’t be long and X (deceased husband) doesn’t mind.
B: Are you sure. Could you ring him?
Me: Somebody already has and it’s fine.
B: Well I suppose it’ll be all right. Just let me get my handbag and put my lippy on.
[15 minute search for handbag]
Me: Come on B.
B: Oh I think I should stay put. X. won’t know where to find me.
Me: He knows exactly where you are and we won’t be long anyway, B.
B: Oh well I suppose so but what about money? Wait a minute darling I just have to put my lippy on.
Me: B, I really need your help with this wheelchair.
B: Of course.

OR:

Me: O. do you want to go for a walk outside using the wheelchair?
O. No, no noooo – I don’t want the red with the pink. What is this? Stupid!
Me: How do you like the sunshine?
O. Too HOT – too fast, slow down!
Me: Sorry, sorry.
O: Slow down!
Me: We are crawling now, O.
O. Oh you crazy one – crazy crazy (guffawing).

Of course there are many more conversations, lots of silences and miscommunications, but the wheelchair walking routine I’ve now established is a winner in so many ways!

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Jan 13

Silence
by jmgoyder

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Wings

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