It is several weeks now since I began the routine of making myself at home in Anthony’s room at the nursing home. Sometimes I am there from noon to 5pm, but mostly from 2-5pm. The fact that I am always there at sundown has been a plus, and sometimes Ants thinks he is at home. My mother visits him at least once a week and told me that I had made a little ‘Bythorne’ there (that’s the name of our farm). I now write everything Anthony says to me in a notebook because I am fascinated at how someone with encroaching dementia can to-and-fro from past to present, from memory to imagination, from anxiety to exhilaration. But his grief when I leave to go home can be very upsetting because I have to explain that I am going back to Bythorne and he has to stay in the nursing home. Anthony doesn’t always understand this and thinks I am abandoning him so it is always a difficult ‘goodbye’ but I think I have figured out how to make it easier with a bit of banter – not sure yet.
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.
I have never been that crazy about routine. As a younger person I had a reputation for being a bit erratic, despite being a nurse and then a lecturer (jobs in which I was never late but always nearly late!) When Anthony went into the nursing home (nearly two and a half years ago), there was a lot of grief, confusion and uncertainty, but no routine.
Now we have a routine and my heart has stopped racing around anxiously. It is so simple and easy and I wonder why I didn’t do this before but I guess the new routine coincides with a noticeable deterioration in Anthony’s mobility and mind function.
For a couple of weeks now, I have been going into the nursing home for most of the afternoon. In Anthony’s bedside cupboard I have lots of snack foods and drinks, cup-a-soups, brandy, wine, chocolates and sometimes I bring fresh cheese and olives.
If the heater isn’t turned on I reach up and press the button, after kissing my husband hello. Then I put a blanket from home on Anthony’s legs, adjust the chair, change the TV station to something I want to watch, move my chair right next to his and hold his hand.
Sometimes (lately) Anthony says, “How do you always know where to find me?” Sometimes he can’t get the words out – they stumble and crouch, frustrated, just above his lips. Sometimes he drools into what we call ‘the dribble rag’ because his swallowing reflexes have slowed down. Sometimes he tries to squeeze my hand in his and there is a small smile.
So I am now in the nursing home with Ants from 2-5pm most days and sometimes from noon. Does this make me a caring-wife hero-type? No! I don’t even understand what has happened to me to make me all-of-a-sudden so attentive! I love him, of course but I hated going into the nursing home for awhile/off and on. Now I actually can’t wait for 2pm every single day.
This routine has really helped me cope.
PS. This new routine means I don’t have much time atm to follow, comment on other blogs but you are all on my radar.
I love the meandering confidence of this post – inspirational!
Originally posted on 50 Shades of Gray Hair:
I’m sure this image spoke to me the day I snapped it
Was it the flowers the drew my eye?
Was it a feeling of being on the outside looking in?
Getting my head caught in the ropes (a.k.a. arghhhh)?
Swiss cheese being what it is…I’ve forgotten it or lost it or maybe I just thought it was pretty at the time
However you look at it…I’m damned if I know now
So…as I often do when this happens, I just sit and stare at it.
Sometimes I fuss around with it…change a filter here, contrast there, funk it up a bit to see if it yells something out.
The funk didn’t help, as it is not telling me what it wanted to say, but it did put me in mind of something…
Don’t ask…as I haven’t a clue
You know…that fabled and famous guy that no one seems to…
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I think Anthony has entered a new phase of Parkinson’s Disease just in the last week or so. Taking him for drives, or home for the morning or afternoon, or out to lunch, or to visit friends/family has all-of-a-sudden, it seems, become something we don’t do any more.
This new phase is partly due to a deterioration in Anthony’s physical mobility, and his current sleepiness. The transition from Anthony and Julie gallivanting off for the day to Anthony and Julie sitting in his room at the nursing home, watching re-runs of Master Chef, has been strangely enjoyable for me.
Today I had to take Ming to town to get the bus to Perth at 8.45am so I thought I may as well go straight to the nursing home and spend the day there. After seeing Ming off, I found myself in an I-can’t-wait-to-see-Anthony-mood (a mood that is capturing me more and more).
So, for the first time ever, I spent the entire day at the nursing home (from 9am – 4pm). Partly, I did this as an experiment to see if I could cope. But my other reason was to see if Anthony would like me being with him in the nursing home rather than going out; he did! I will now plan all of my writing etc. to be done in the nursing home.
I’m not blogging as consistently as before – hope to catch up soon with blog friends.
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.
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!
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 email@example.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 ….
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.
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].
Today, Ming and I took my mother out for lunch for Mother’s Day and we had a lovely time together, and we all mentioned Anthony but the logistics of getting him into that crowded restaurant were too difficult, so we didn’t include him.
After lunch, Ming and I went to the nursing home. Usually, when we visit, Ants is out in the sunshine, or still at the communal dining table, or sitting in the armchair in his room. But, today, for the first time ever, we found him in bed, with the bed-rail up. Ming and I briefly watched him from the doorway; he was nearly asleep, but not quite, his eyes were vacant and wide, and his tongue was lolling, and he was extremely confused.
I sat right next to Ants and stroked his head, while Ming looked through a couple of boxes of photos of Ants when he was young (which I have kept in Anthony’s nursing home cupboard for ages) and, for the first time ever, Ming was really interested.
But Anthony was terribly blank and his speech was incoherent and, even though I know he might be a lot better tomorrow, I caught a glimpse of the inescapable future when he will be bedridden and unable to communicate.
I am totally gobsmacked by my mother’s capacity to love and visit this son-in-law of hers who is just a bit younger than her. When, as a teenager, I fell in love with a man twice my age, she must have been totally alarmed and who wouldn’t be? He was 41! Long story short, it took many years for it to all work out with Ants and me, mainly because he respected (and was terrified of) my youth. But when we finally got married, my mother embraced him with her whole, beautiful heart, hesitantly to begin with, cautiously and protectively, and now totally.
Anthony is approaching, in a slow and confusing way, the next phase of all the diseases he suffers, mainly Parkinson’s. I visit, or take Ants home, or out, every day when I can but I fluctuate and am not very organised (i.e. yesterday I brought him home for the day then felt like I needed a crane to lift him from chair to wheelchair to car – it was terrible and I wasn’t physically strong enough and, all the way back to the nursing home I sobbed silently, because I had become impatient with him with my “JUST PUT YOUR LEFT FOOT FORWARD, ANTS!”)
Even though I can already see that I have written a rather convolutedly emotional post here, I want to thank my mother so much for helping me care for Anthony now that he is in the nursing home, for visiting so often, and for loving him. Thank you Mother.
But when he is totally bedridden and asks for you and not me we may need to have a bit of a discussion!