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stefanosmndjourney

Generalisations

One of the less obvious things about a progressive terminal illness is the mental strain it takes on the patient and those caring for them. Every case is going to be different and I can’t speak for anyone else but I can make generalisations.

This is the most difficult thing to write about because making it public breaches trust and also adds an element of outside intervention- people always try to ‘do’ or say something helpful after these posts but I’m just sharing a story for cathartic purposes. I don’t need anything back from you.

This mental struggle has become such a large part of our journey now that I think it’s dishonest to leave it out.

So instead of telling tales or asking for sympathy or fuelling the flames, here are some generalisations. People who are really ill and very physically disabled have a lot of time to think, and ponder their awful circumstances and dreadful futures, and become anxious, and also cast judgment on those who choose to stay physically close to them. People who are caring for them inevitably lose the luxury of time to think, as they become overwhelmed with day to day tasks, caring for everyone and earning everything and trying to stay afloat and not get sucked into a deep trough of grief. Doing the latter would prevent them from getting up every day and doing the necessary former. So they keep going, and probably seem like they’re doing fine, even when they’re not. Which is probably really irritating to the person who is very ill, who needs that person (understandably) to grieve for them and have long talks about nothing and everything… exactly what a chronically exhausted and busy person can’t do.

So it becomes an uneven battle of wills, one person too drained to give what the other needs, and the other left with so few distractions that they begin to drive themselves crazy with anxiety and paranoia, and imagine that the person that is visiting them doesn’t love them at all, but actually wishes them harm.

I know this is a pretty common scenario, I’ve been told so by all the professionals who hover around us making sure none of us have topped ourselves off yet (or anyone else). But that only makes living with it a tiny bit easier, from the perspective that I truly know it’s actually not my fault. Even though this person sometimes wants me to feel like what is happening to them is my fault.

That’s all I want to say at the moment.

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Changes

Since October we’ve had a lot to deal with. Stefano’s father passed away in Italy, which was hugely traumatic for him and the family, most of all, I’m sure because not only was Stefano not able to jump on the first flight home to attend the funeral, but because he wasn’t able to help his brother and sister deal with the mountains of grief and responsibilities which inevitably arise from the death of a parent. Understandably, a lot of tension surfaced between everyone at that time, and (I don’t think coincidentally), within a few weeks, Stefano was given a bi-pap artificial breathing machine to use overnight, which pumps air into his lungs all night. Due to the machine he is now able to sleep again, but it also presents its’ own issues for us to deal with. For example if the mask slips ever so slightly in the night, it stops working and Stefano is unable to adjust it himself.

At about this time, with tensions higher than they’ve ever been, Stefano and I started to discuss the options for discharging him from residential care. We both agreed that while we wished it were possible for him to come home full time, what he needs now is 24/7 medical supervision, which I’m unable to provide for him at home. The weight of the responsibility of caring for Stefano on my own has pushed me down to the point that I don’t feel I can continue to carry the burden of it. It’s very sad for everyone, but the illness is to blame, not any one of us. None of us asked for this situation, and we have all survived up to this point as best we knew how. I made myself sick with the stress of it all, (I won’t go into detail)  and I need respite myself from the illness. So we have come to a mutual decision to try to have Stefano at home with us for one night a week, and also a couple of day visits whenever I can manage it. Some people in my life have responded by saying they thought it was a shame that I’m not able to continue to be his primary carer. But I know the shame, or tragedy, is the illness. And the shame is that any of us have to deal with this at all. And that I know Stefano and I are making decisions which value the health and wellbeing of every person in our family, and that we know best what we need. Opinions from others are unwanted at these extremely sensitive times when we are making decisions that are the stuff of nightmares. I’m grateful for friends who, perhaps through experiencing their own tragedies, instinctively know when advice and judgement isn’t helpful, but that support and distractions are always welcome.

We are adjusting to this new normal, and it means once again the process of admitting a level of defeat; from the illness, but for me personally, I have reached my tipping point. I genuinely never thought I would reach it and it’s gutting.

We are both grateful for the ongoing care he receives at Ross Home in Dunedin, the nurses and staff are incredible. For his carers who continue to pick him up and take him for a ‘swim’ once a week at the physio pool, the highlight of his week. And for friends who go out of their way to fly down and visit, who invent reasons to be in Dunedin for a couple of days, who bother to sit and try to work out what Stefano wants to talk about today. It’s not easy any more to work it out. Friends who send video messages, or cards to Stefano because they can’t make the long journey from Italy or Austria or Australia.  And friends and family, who step in and look after our son when I need to work or care for Stefano, for hours or days on end, and understand that he needs extra cuddles from blokes because those are the ones he most misses.

You guys are all legends.

 

One day at a time.

Stefano is in a rest home at the moment and has been for 5 weeks. It gives me a much-needed rest from the constant anxiety of having MND in the house. But we still visit every day and take him to appointments and take him out for special things. Not meals anymore.

He’s there not for ‘good’ but because we got to the end of the road with the bathroom in our old house. We searched for an accessible home which would meet Stefano’s needs, but after a year of nothing coming on the market, we decided to take a leap and use the funds many of you helped raise in London, Australia, Italy and NZ for us- to put a deposit on a piece of land and start to build exactly what we need. A house with flat access and wide doorways and corridors and a wet room for Stefano and a garden he can access.

The build has moved incredibly fast, with both Stonewood (our chosen builders) and the Dunedin City Council rushing plans and consents through so that the probability of Stefano actually being able to live in the house is now much higher than it might have been. It’s a positive thing that’s happening amongst everything, a welcome distraction, and only possible because of help from others. It feels strange to be looking forward to something after such a lot of hopelessness. But in every positive there’s always the heavy feeling that won’t budge, that never allows any of us a glimmer of real happiness, not for a second. But still I’m very grateful for the distraction, and want to say a big thank you to any of you who might be reading this, who played a part in helping this come about. Without that help Stefano would be moving to a home ‘for good’.

How is Stefano? is the most common question I’m asked; as to be expected, I always answer. Yes he’s progressed since March, he can barely swallow and I find it difficult to give him liquids at all now. Mostly they end up falling on his jersey. But yet he’s still eating and drinking. The doctors have warned him against it because of the risk of infection if he inhales food during a choking episode- he chokes nearly every meal, and he isn’t able to cough things up like he used to- but Stefano REALLY loves food and it’s one of the last things he has left. So he’s hanging onto it. Not literally.

Sometimes his arms slip off the arm rests on his chair and we need to pick them up and put them back on his chair. He’s looking very thin. And I can’t really understand him anymore. But yet he’s still driving his chair- god knows how- and he’s still fighting to be understood, refusing to use his computer to communicate (which would render actual conversations impossible due to the speed of it.)

So that’s how we are. Hoping to make it to the new house. Hoping to make it to Christmas. Hoping to make it to the next birthday.

Matteo has started to give ‘Dad’ a peck on the cheek when we leave his ‘hotel room’ which is sweet. And he likes to tell him about his day.

I’m exhausted. And taking one day at a time. But I’m very capable and hard headed so I’ll be fine. One day at a time.

2 years of this shit

It’s coming up two years since Stefanos diagnosis. That Awful day when I sat opposite a neurologist I’d never met before in Auckland Hospital, 38 weeks pregnant with our first and only child, and listened to him rip our lives to shreds in one sentence. I’ll never forget the expressions on their faces, how they seemed to care so little. Like it was a routine day for them, serving a death sentence in that room with bright fluorescent lights. It was annoying to them that I was so upset. We were just discharged after that, sent out into the daylight- to do what? They couldn’t do anything more for us. We’ll be ‘looked after in the community’.

So from April 13 onwards we are on borrowed time. I guess we are supposed to feel grateful for every day after that. Forgive me if I don’t.

I don’t write blog posts anymore because things haven’t changed much. Or they’ve got worse. Or the stories are just depressing. Which isn’t very fun to write about or read. If you want something positive, or a laugh, stop reading here. If you’re still reading- I’m not writing this for sympathy, I find it cathartic, I feel like I’m doing a favour to Stefanos friends to keep them in the loop- and I also want you to realise how lucky you are to have a life without mnd. It might make you appreciate more what you do have and not sweat the small stuff.

Mostly we have been struggling with medical systems and services. And adapting to Stefanos constantly changing needs. I’ll give you a couple of examples of our medical adventures.

We visited our good friends at their rural property in Brighton (south of Dunedin) in October last year and Stefano had an awful crash in his wheelchair, ending up with him smashing head first onto a concrete path and the chair (160kg) landing on top of him. Now- I’ve been told we should never lift him when he falls because of the injuries we can cause to him and ourselves- so we called the ambulance and waited, while the thick pool of blood coming from Stefanos head grew on the ground. As day turned to night and it started to become freezing, we realised we had been waiting over an hour so called the ambulance again. They told us they hadn’t sent anyone, and weren’t planning on sending anyone. Mostly because stefano wasn’t dying enough for them to prioritise the call. So we were left with no option but to try and lift the chair off him and get him up into it and drive him to the hospital ourselves. Thankfully our friends looked after a really upset Matteo while all this was happening, covered stefano in blankets and didn’t mind that they were blood-soaked, and also followed us into the hospital to take care of us until we were admitted into A and E. Stefano had a long recovery- and as usual, didn’t return to his full former capacity after the accident.

More recently, Stefanos feeding tube needed to be changed, so we went in for what was to be a routine procedure. It was completely stuffed up- they did a lot of damage to his stomach pulling it out and then didn’t put the new one back in properly. So we spent 13 hours in A and E again waiting to be admitted so that he could be drip fed while the infection was monitored, and his peg replaced properly. During this time stefano was pumped with morphine and left to his devices/ mostly with no fluids and not enough oxygen for his system to cope under all the pain killers. I had to remind nurses that he was unable to breathe properly with his head lowered onto the bed- as his mnd has left his lungs compromised- and I had to actually yell at someone to get him some oxygen to raise his blood oxygen levels since they had slipped dangerously low- no one had noticed. He’s lucky he doesn’t have brain damage. After another long painstaking recovery, stefano returned home with much less physical strength than previously. I asked the Hospice to take stefano in for a week of respite, because his care needs were higher than I could cope with after his discharge- but no cigar. He doesn’t have cancer so he’s not a priority.

Yes there’s a complaint being made. But that’s not the point. It’s not a one-off accident that wasn’t handled well. This is what it’s like every month for us now- or every fortnight- I don’t count anymore, it’s just our life. We know hospital orderlies by name and we chat to St. John’s ambulance officers on the street because frankly we see them more often than anyone else. We’re part of that strange little community of mostly very elderly, vulnerable, invisible people who spend their lives getting in and out of ambulances, never actually getting better.

Stefano is now 100% dependant on help for everything. He’s even losing strength in his hands to the point that he thinks that he won’t be using his chair for many months more. He can’t take a sip of water or have a bite to eat without it being given to him. He can’t scratch his itches. He can’t stop Matteo from climbing on his lap and playing with his wheelchair controls. He can’t turn the pages of a book (please don’t send him books unless they are ebooks) or move his bed sheets if he gets too hot or cold.

I’d like to be like those other wives of men with mnd who say ‘but there’s so much love between us that I will do what his hands can’t do, I’ll willingly do everything for him and feel hopeful that he will be the one miracle patient who overcomes this illness’. But I’m not. That’s not how it feels. I’m still too angry that this is happening to us. That we’re not that lucky couple taking photos of ourselves on our wedding anniversary with Stefano holding Matteo and the beach behind us, saying ‘gosh I feel blessed’. Like when I read articles written by women who are pissed off with their husbands because they don’t do exactly 50% of the housework since their babies were born, I actually want to wring their necks. And that we’re not able to celebrate any of Stefanos successes anymore. They’re all memories in the past and too painful for either of us to bring up.

Matteo knows what’s happening and often asks me if dad is alright. I don’t know what to say to him. ‘Yup he’s fine.’ (But chances are, you might never remember him).

Spring update

IMG_0230 (1)It’s been three months since the last update.

Stefano is now confined to his wheelchair except when transferring to another chair or bed. We have a lot more equipment in the house and it’s starting to resemble a hospital. We have a hoist. It’s huge. We have a hospital bed because Stefano now has trouble pulling himself up to get out of bed, and also has trouble getting into bed. We have all sorts of stools and chairs for specific activities, including showering and dressing, and we are currently in the middle of a bit of a crisis point with the shower, which is verging on not being usable for Stefano. We may have to fit an accessible shower but there’s currently a debate about who might fund that.

The wheelchair van has been amazing in terms of helping us keep on keeping on- and we use it almost every day, unless it’s heavily raining or icy in which case Stefano can’t leave the house because his chair doesn’t like those conditions.

For about a month we have been receiving funding for Stefano’s personal care, and his carer now comes twice a day, to bathe and dress and feed Stefano. On days when I need to be out of the house during lunch time he also comes to feed Stefano at lunch time and make sure he is ok.

Stefano has two exercise programmes, he has a stretching programme with which his carer helps him in the morning, and he also goes to the physio pool to stretch (he is hoisted into and out of the pool). Mostly his carer extends his limbs in various directions repeatedly as it’s something he can longer do. Stefano’s hands are now mostly clenched in a fist and he uses the tip of one finger to type, which he does with his iphone. Computers are too difficult for him to use now.  He is about to receive his eye gaze programme and will be able to start communicating through moving his head and eyes. I don’t know how that is going to go. But expect at least it will be nicer for him to be looking at a bigger screen. One of the biggest issues with the technology is that the accessible application which allows him to communicate is not yet compatible with either facebook messenger or whats app so it’s going to be difficult for him to easily message friends and family in Italy and Germany. Kiwi friends he can text, but he really is mostly messaging Italy. Stefano can still speak which is a minor miracle, given what we expected, but his speech is quite difficult to understand.

I’ve had a rough few months and been through the worst flu I can remember, which took my voice completely for three weeks, and I still have no singing voice, many weeks later. While I was sick I wasn’t able to care for Stefano or Matteo (or myself) and mum looked after me and Matteo at her house while Stefano went to the hospice for 10 days to give me a chance to recover. Stefano’s increased needs have put a huge strain on both of us, which you would expect.   It does help me to have someone come and relieve me of caregiving duties for a few hours a day so I can tend to our boisterous toddler, but at the same time I feel like I live in an open house now with all the people coming and going.  My friends know I am a private person (which is why I restrict this blog to certain subjects and nothing too personal), and always treasure my home as a private place, but now we have health workers coming through the doors left right and centre, some without even knocking, and I just have to deal with it. We don’t eat together anymore because Stefano is either being fed in another room, or I am feeding him.

Stefano has a procedure booked soon, to insert a tube into his stomach, and feeding should be more simple then. He will still be able to eat food normally for the meantime, but the pressure to eat large quantities (which is very hard work for his chewing and swallowing) will be off.

Recently we had a group meeting with some of Stefano’s support team (health workers of various sorts) and one of them said something which jarred me. We were discussing Stefano’s need to fill in his advanced care plan- and I mentioned I wasn’t sure in which country Stefano wished to spend his final days. The doctor said he will need to decide soon because he is nearing the point where he will have trouble having airlines accept him as a passenger on a long haul flight.

So that was alarming.

Home

I try to update this blog every month or so, but there’s not a lot of news to report this month.

We’re ordering restraints to fit in the wheelchair van we bought, so that, when they arrive, we will have some freedom and be able to move as a family further than about two blocks which is Stefano’s current limit. He would beg to differ but he is furiously fighting this illness, as you already know, and won’t admit to any of his limitations. Which is how he is surviving.

Stefano can’t feed himself very well any more and I have to feed him probably more than half the time. Discussions about the tube are becoming a daily thing rather than a monthly thing.

We had an amazing weekend not long ago where we filled the house with friends and just relaxed. What we miss the most is activity which isn’t anything to do with MND. Stefano left work a year ago, and in the midst of the hustle and bustle of caring for a 1-year old and a very sick husband, I sometimes stop and just realise how dark the world must be for him, how little he is asked to do anymore; how little wine, which was his whole life before this, is a feature in his life at all- he can’t even enjoy bringing a glass to his mouth. He is desperate for a purpose, but his body won’t allow him be useful.

Stefano’s physio came to visit today, having not seen him since before the Italy trip, and she seemed quite shocked at Stefano’s deterioration. I have almost no perspective as I see him every day, so it was also shocking for me to have her say she noticed a sharp difference.

Sometimes tensions run very high in the household and it’s difficult to remember the awesome life we had before the illness- such a short time ago. Lessons to learn: appreciate what you have, today. Don’t pick holes in it and wish for better, today might the best day you’ll ever have.

 

 

Family and renewed hope

Stefano was diagnosed just over a year ago, and I’m not going to pretend that it has been easy to remain hopeful for a cure. When you live with ALS every day and watch it eat away at your loved one, it’s difficult to feel anything but hopeless defeat, and the exasperation of life spiralling out of control. 

It’s particularly noticeable when it’s in such stark contrast to the huge leaps in development and ability which Matteo is making. Every day Matteo can do something new, while every day something is more difficult, or becoming impossible, for stefano.

However there is a renewed ray of hope this week as stefano has met again with Dr Silani in Milan. Since his last appointment in July, we have discovered which gene is causing his ALS (something some doctors told us would be like finding a needle in a haystack)- and we now know that his gene is one of the two for which an antigen is being developed. The race is, as always, against time. Silani believes it will be ready for human testing in Boston Sydney or Milan either late this year or early in 2018. So without wanting to do the math, we all just hope it will be ready for stefano. And that it works. 

We’re in Florence and stefano has had many chances for badly-needed catch ups with his family and friends. Exacerbating his condition is the fact that he lives so far from most of the people who he loves. So this time is important. But exhausting for me. Stefano is not very mobile and refuses to hire a chair while we are here- so we have had many challenges helping him get up and down stairs, and just walking through the centre with all the uneven surfaces and broken paving stones. 

We will be home again shorty – which brings relief for me- and great sadness for stefano. And a little of the other for each of us as well. 

Facebook has many upsides, but I am beginning to hate the memories that are shown to me automatically, it reminds me how terribly fast stefano’s ALS has progressed. This morning a picture came up from one year ago: I was very pregnant, sitting watching stefano build a gate which was to go on the new fence which stefano built for our beautiful home in Warkworth (which we had to sell soon after the diagnosis). 

Such different times.

Stefano surrounded by his favourite things- cheese, meats, beer and friends – by the fireplace at Petrolo
Reminiscing about our engagement party at the rowing club in Florence, a rare moment without Matteo!

Transition

We’re going through some bigger changes than usual this week. Stefano’s wheelchair has arrived. So we begin this chapter. We weren’t even sure if he would need one but his physio (who has a lot of experience with patients with MND) put in an urgent request for one for him after his first fall, so we’re lucky to have it so soon. Stefano is still able to walk but not very far and he’s not very steady. There’s been a great flurry of specialists preparing the house for accessibility, and preparing the chair to fit him correctly as they’re expecting he will spend progressively more and more time in the chair. Stefano was very hesitant to use it at first but now he understands it gives him freedom: he’s able to leave the house on his own without feeling unsafe again. I can even send him on trips to the supermarket to get chips for me and the kind assistants hang his shopping on his handle bars for him. 

As we are preparing for a trip to Italy for him to see his family, we now have new challenges ahead in terms of how to handle his fatigue when travelling, how to handle the stairs at his dads house, hiring equipment, how will a wheelchair cope with the streets in Florence, and there’s always such a big area of unknown- what if he progresses further and needs medical intervention while we’re away… many worries. 

But for now stefano has small happiness in that he can move without pain and accompany us on a morning walk.

This gain doesn’t come without a great sense of loss from both of us. 

Progression 

We spent a month in Napier while I was singing an opera, which was a welcome distraction, arrived home last Tuesday.

On Sunday night Stefano tripped over the damn cat and ended up in hospital with a broken shoulder and another black eye. It will probably heal, but Stefano feels even more vulnerable and I feel even more nervous walking with him. And we now hate the cat.

At the emergency department I was asked to tell our story a few times more and got a few more incredulous looks when I said he was diagnosed 10 months ago- and then answered the question about matteos age, he’s 9 months and was born 1 month after the diagnosis. That was the worst month of our lives but I still can’t bring myself to write about it.

Stefano’s kind physiotherapist has managed to get hold of an electric wheelchair with a headrest for him. I’m not sure he wants to use it yet but it’s good to know the option is there.
I went with stefano to his first gastroenterologist appointment at the hospital today, at which he was told he should think about getting a feeding tube put in in the near future. His weight is fairly stable, he’s only lost 2kgs, but he is not able to chew and swallow the range of foods he used to, and having a few choking fits, inhaling liquids and foods.

Not much good news this week.

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