Until there's a cure ... there's care

Wolfie and Erika

By Erika Reiter

6th June 2015. But it feels like it was only yesterday. The day our lives were changed forever, though we didn’t know it at the time. Started off quite well, going away for the weekend with friends and staying at Geelong, 1 ½ hour trip and bubbling with anticipation for the day to come.

My husband Wolfie is driving as usual. About ½ an hour into our drive, Wolfie mentions he is starting to feel like he is getting a cold, and a headache is coming on. I offer to drive and tell him to try and park on the side of the road, but he says no he can drive (he knows I prefer him to drive, such a sweetheart). We check into our hotel, but next place we go to is a chemist to get Panadol for Wolfie. Then our welcome drink, but he has decided he will only drink water as he doesn’t feel right. Then a stroll along the boardwalk, but Wolfie is walking slower than normal, I feel a little impatient with the slow walk, but also a little upset for him that he is not well, as we were looking forward to this weekend.

That night we are eating at the restaurant, but Wolfie does not eat much as he is under the weather, as he most definitely has caught a virus. In our room, we go to bed and I want to cuddle, but he has asked that he needs room as he doesn’t feel well. I notice when he sleeps that night, that he seems to be breathing very heavy, and think it is a very bad cold/flu that he has caught. He is also sleeping on his back, which is highly unusual, and not turning. I remember lying awake just watching him breathe, maybe in the depths of me a part realised this was a pivotal moment in our lives. Little did I know that from that night onwards I could never snuggle and squeeze him in bed again. That’s how quick the breathing changed for Wolfie.

After returning from our weekend, my husband goes to work on the Tuesday, but returns home early as he really was too unwell to be at work. The next four days he is laid up in bed and does not leave it, and Wolfie has never been sick like this before. After the four days he actually does get over his virus, but he is still walking a tiny bit slower than normal (at this stage nothing to worry about) and I still notice his slightly laboured breathing while laying on his back, which is new and unusual for him to do.

Life moves on in our usual routine, but then Wolfie complains that he is cramping a lot. When he bends over to put on his shoes, he even gets a cramp in his stomach from the effort, all very new and unusual. Then one morning Wolfie asks me to help him with his buttons on his shirt, as his fingers are stiffening. I laugh and say, what, are you getting arthritis, and then happily help him. Still not overly concerned, but tell him that this virus has obviously knocked the stuffing out of him and he should go and see our GP, though he says no he is too busy and the kids at school need him, as he was always a very dedicated teacher.

Moving on to the 25th July and we go dancing at the Austrian Club, a family event. My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs. He is dancing with our daughter, and we are happy, but I am a little concerned that he does not move as well as he used to, but still we do not believe we have any real problem, just that damned virus really took a lot out of him. Wolfie does agree to see a natural therapist, who advises that he notices Wolfie cannot stand on his tippy toes on his left hand side. Little did we know then that this is one of the first signs of MND.

In the next few weeks, we go away once again with friends, staying at Albert Park Lake. We take the tram into the city, have a lovely dinner, but then we all run for the tram, and I notice that Wolfie is not keeping up with us running. This is highly unusual, as with our little group of 3 couples, we are all very fit and active for our age, and my husband is probably one of the fittest.

We then accidentally take one stop too early before our hotel on the way back that night, so we end up having to walk 3 blocks. During our walk to our hotel, my husband makes us stop 3 times as he needs a rest. I tell him quite sternly that he really needs to go to the doctor to see if there is anything still wrong with him. Again he is complaining there is no time, but after constant nagging by me he agrees to see our GP on the 24thAugust.

Our GP immediately tells us he believes that he needs to see a Rheumatologist, and is booked in on the 2nd September. The Rheumatologist takes one look at him, and advises he believes Wolfie needs to see a Neurologist. He points out Wolfie’s hands, and shows that between his pointing finger and thumb the muscles have completely wasted away. Now that he has pointed this out it is quite obvious, but in all honesty we had never noticed that before. His Rheumatologist rings a Neurologist to ensure he is seen to straight away. This is the first time warning bells are starting to ring for me, because if he is worried then we obviously should be.

4th September, appointment with the Neurologist. After this first interview, she advises my husband that she believes he has MND, but with our current technology the only way to find out is to disprove what he does not have, as MND comes under a very broad umbrella.

7th September, Wolfie is hospitalised for a week to undergo numerous tests. One by one neurodegenerative diseases are dismissed, eg. multiple sclerosis, until all tests have been made and proven that he did not have that particular disease, which meant Wolfie was in the category for MND, and there is no definitive test for MND as it is so broad and varied, and no 2 cases are ever exactly alike. Average life expectancy from onset of symptoms is 2 to 3 years. As for Wolfie, his form of MND affected his lungs first and foremost.

From this point onwards, he has regular appointments with his Neurologist, but this is more for monitoring purposes for them, as there is nothing they can do for him. There is one drug, but it does have multiple and varied side affects, and only extends a person’s life by 2 to 3 months, so Wolfie decided he preferred not to go down that path.

End of September and Wolfie has decided to finish teaching, as he physically cannot cope with the demands of the job. Early January we holiday at Nepean as is usual for us. Wolfie cannot do any of our long walks (or any walk for that matter) as we have always loved to do. I drive us everywhere. We drive to the beach each evening to watch the sunsets, but he prefers to sit in the car as the effort to get out is too much. By end of January 2016 we decide to move our bed into our living room, as we have a split level home and it would be easier for Wolfie not to always have to go up and down the stairs. His walking has gone extremely slow, and it is very obvious now that something is severely wrong with Wolfie. His appetite has also been affected, and he has no desire for eating.

There are regular nerve tests, as these track how quickly he is deteriorating. Late March my parents come over for a visit, and they notice that he is half asleep on the couch. I say that he has been like that for a couple of days, but much more so today. My dad said he did not believe that this was normal, and it makes me realise that there is something wrong. I ring the ambulance, and they ask if he is coherent, and I advise yes, he does answer correctly but he does seem a bit dazed. They decide to take him into hospital, and he walks himself up our stairs and into the ambulance. My daughter goes into the ambulance with him, and advises us when we meet at the hospital that by the time the ambulance had driven to the end of our street, he already did not know his own name.

Wolfie is in the Intensive Care Unit, he has had an emergency tracheotomy, and they are advising that when he pulled into the hospital emergency centre he was a code blue with probably only ten minutes to live. I have been advised that we should consider that he may not survive the night.

Next morning I enter the ICU and my husband is sitting up in bed, looking as bright and fresh as a button, saying he is starving and chattering away as if not a care in the world. The trachea has also been removed, and his oxygen levels are now back to normal again. With his type of MND it does not affect his speech or eating, as I have said previously, it is mainly his lungs. I realise what a huge transformation this is, and quickly begin to realise that it is the oxygen that made all the difference. Since the 6th June 2015 he had constant morning headaches, and this morning he had none. The oxygen. If only we had known. And his appetite fully restored. I had gone to the chemist previously to get appetite stimulants, but looks like it is all good now. Unfortunately our Neurologist was not a specialist in MND, and we mentioned the morning headaches to her, but she believed that had nothing to do with his MND. After this episode we were recommended to take Wolfie to the Austin Hospital as they were specialists in this field, and that he should be going to Bethlehem hospital as they specialised in MND, and how very true that was. From this point onwards Wolfie was given a breathing machine, his being a VPAP, which he had to use every night from now on, and for 2 hours during the day. He also never ever had another morning headache again, and his appetite was fully restored from this point onwards.

This machine was a life saver, and returned Wolfie’s quality of life. He had energy again, full appetite, and this stayed with him until shortly before his death. With Bethlehem they organised breathing tests, again nothing to help him, just a monitoring of where he was at. Out of all the constant hospital doctor visits, the most helpful was with the Bethlehem Occupational Therapist as they had numerous ideas and a good understanding of what he would need and when he would be needing it. Our local Occupational Therapist was not familiar with MND, so she started to communicate with the OT from Bethlehem, so we continued to receive the good advice from Bethlehem. At this time we started using a wheelchair. Wolfie also only had one large hospital style chair that he sat on during the day, as he felt most comfortable sitting upright with his feet on the table. Until the time of his death this was always to be the case. We also installed ramps at home, and a stairlift, to make it much easier to take Wolfie out of the house. We liked our regular strolls with his wheelchair, and would go out eating. The only difficulty was the toilet stops, as when you lose muscle control you also lose it down there. When he had to go, I had to get him there as quickly as possible. I am very happy to say he never had an accident, but that I think it was just good luck and management on his behalf, with us always trying to pre-empt what he needed.

Wolfie had weekly visits to a Chinese Therapist, and his left leg was always the first affected, but after a session Wolfie would say that he could feel less numb in his leg after the treatment, but it only lasted for a couple of days, and then the numbness was back to progressing again.

Wolfie’s Dietician advised that he should have a PEG inserted into his stomach, as his lungs would soon not be able to handle this procedure, so he needed it done soon, so 31st May was the day. This was an agonising procedure done under a local as Wolfie’s lungs could not have coped with an operation. For 4 hours he had to sit on his hospital bed with a wire hanging out of his mouth by about a foot, which they had put down his throat. He was extremely uncomfortable. Then the procedure, he could feel every movement, and unfortunately for him it took the doctor a full 10 minutes of pushing and pulling because he could not connect the wire tubing correctly to the hole they put into his stomach. After a couple of days Wolfie came home, but as usual with this disease any trauma always put him backwards, and once you go backwards with MND, you never recover, as the muscles never come back. He moved even less and slower. From this point onwards Wolfie was given nutrients via supplemental feeding, he would have 2 bottles per day, as losing weight is a constant battle with MND, due to losing muscle tone. But his appetite and eating habits were still good right until the end.

Wolfie received three monthly visits from the MND Advisor for our area, and these were extremely informative and beneficial. He advised Wolfie of a very promising trial, the Copper trial, where mice that had severe MND were fully restored and after a usual survival rate of 2 weeks, the mice lasted 365 days after the copper treatment. Wolfie got quite excited and made sure his name was listed as available for this trial. Unfortunately Wolfie never made it on this trial, as every time it was continually postponed. Wolfie’s Neurologist said she was very excited by the possibilities of this trial, a game changer she called it, but she wondered if it would ever see the light of day.

The Occupational Therapist recommended when Wolfie needed to ask for the chairs/beds/bedside commode/bell for ringing for help/eating utensils/cushions for support/air cushions/mattress supports to prevent bed sores/ramps/wheelchairs/lifts/hoists from the MND Association, who I have to say provided all at no charge excluding the stair lift, which was a tremendous help.

17th August and Wolfie is booked again into the Austin for a sleep study, to monitor how he is going with his breathing machine, so they can advise what adjustments needed to be made. His machine dial is now on maximum for humidity, and slowly stronger settings are put in place.

Early September 2016 and Wolfie is seeing a Continence Nurse Advisor, and just in the nick of time, as from this point onwards he is wearing constantly a catheter for weeing, as he physically cannot stand up any longer to pee. This is also a great help for overnight, as his bladder is quite weak from his weakening muscles. It actually, for a carer, becomes a little easier now, as we were getting up beforehand twice a night to cater for his toilet requirements.

Another visit from Eric Kelly, Wolfie’s MND Advisor, and he is suggesting an electric hospital bed, which Wolfie now very much needs, even though he resists going into it. I suppose a part of him knows it is the beginning of the end. But in it he goes as he cannot get himself out of our own bed anymore. Then the electric hoists arrive, which we start to use from around November 2016. The hoists are cumbersome and take a bit of effort and patience to use, but he cannot leave his bed without it. This procedure alone can take up to 15 minutes to set him up into his chair. And how exhausting it was for Wolfie if he needed to go to the toilet soon after, as the 15 minute transmute took a lot out of him, and then to transport him back. Wolfie can now no longer leave the room in which he has permanently lived in for around a year.

By this time things are starting to progress at a much quicker pace, the end does seem to come very quickly. Wolfie’s outlook changes very swiftly, within a week. Wolfie mentions to Eric Kelly that he does not think he can handle things for much longer, he is very morose, and Eric organises with our GP to have Wolfie receive medication to help him.

As it turns out, this is a god send, as Wolfie reacts extremely well with the medication (morphine). He was not in pain from MND, but had a restlessness and just did not feel well within himself before receiving the medication. The medication fixes this instantly, he is on the lightest dose possible, and for the next month is back to his old happy self. Our life is spinning around the personal bathing, feeding, shaving, hoists, medication, catheter leg bags, twice daily cleaning of his feeding tube, but we are actually quite happy, but from a carer’s perspective I have to say this is all quite exhausting.

Wolfie has elected to die at home. After a month on the drugs, Wolfie’s body acclimatized and more drugs were now required. Then the blocking up of his bowels occurred, a side-effect of all the drugs. Now things become really hard and messy, and Wolfie is not experiencing any quality of life, though he can still eat. He never did truly require that feeding tube, though it did help slightly by giving him extra water to try to not become blocked up.

Early January 2017, and Wolfie is complaining that the hoist lifting and moving from bed to chair is becoming too draining and difficult for him. The effort of supporting his head while seated is exhausting, though he refuses to lay in a bed all day. He is extremely upset, and insists on still being hoisted up but is clearly in major discomfort/distress. In this last week, his voice is getting very, very soft, I need to put my ear close to his mouth to hear him.

He is then given an automated drugging system, which helps him enormously, but after a week, his breathing finally gives in to this insidious disease. Wolfie is now at peace. But he has thanked all of us for letting him stay at home and go on his terms. My darling Wolfie you were very much loved, still are, and always will be. That man could make me laugh every single day in his intellectual and humorous way, and he did this until his very last week. I feel very blessed to have been his wife. Just turned 60 years of age. RIP 21st January 2017.

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