This is written from my own experience of living and caring for a loved one with ALS.
As the muscles related to the lungs become weaker breathing becomes more difficult.
There are many issues related to breathing that can be experienced including breathlessness, extreme tiredness, as well as poor concentration and poor memory. Difficulty with coughing or frequent coughing can also be a problem. If you are unable to cough effectively then you can’t clear the mucus build up, which can then lead to chest infections.
In the early stages Craig suffered from fatigue and would sleep a lot. Coupled with the constant movement of his muscles, he was often exhausted after very little activity. He was often breathless and struggled at night in particular. He always slept sitting up because this made breathing easier and meant he didn’t cough so much.
Craig also suffered from asthma so his lungs and breathing were monitored very closely. He had regular check-ups to monitor his oxygen levels and lung capacity. He had frequent tests at the hospital and also had a device to wear to measure oxygen levels over night, every few months. This is common practise to measure and monitor the blood oxygen levels.
Craig had swum a lot as a child and had very good lung capacity despite the asthma, so his breathing remained good all the way through. He took inhalers when he needed it. This became more frequent as time went on and he had to change the method by which he administered the inhaler, going from traditional to easy expulsion and then a spacer tube. In the later stages he was unable to use the inhaler, as he wasn’t strong enough to suck the spray deep into his lungs.
His main respiratory problem was the cough that he just couldn’t get rid of. The doctors tried lots of different things, different inhalers, cough medicine but nothing seemed to help. The cough was very distressing for him. Some medication he was given eased it but didn’t stop it. This was a particular problem at night when he tried to get to sleep. Craig couldn’t lay flat without coughing badly. Sitting up to sleep had other implications around bed sores and pressure on his bottom. He did unfortunately get some friction sores from slipping in the bed as he slept.
The Occupational Therapist used to check regularly regarding the state of his bottom and whether the pressure was an issue. He had different mattresses fitted in the hospital bed as his needs changed, to try to alleviate any pressure problems. He had a gently massaging one which was quite soothing. I must admit I’d never really appreciated how uncomfortable it is sitting all the time, until recently when I broke my leg and couldn’t walk. I found it really uncomfortable and was desperate to get up to alter the pressure at times. It made me feel a little guilty that I hadn’t realised what it was like for Craig. I did move him regularly to help with this but perhaps I should have moved him more often.
As his muscles weakened and it became hard for him to clear his throat we were referred to the breathing unit at the hospital. They gave us a cough assist machine that would help Craig to cough and clear his throat mechanically. It was not very pleasant and he didn’t like using it but when he was coughing or choking it was invaluable.
He was lucky that he didn’t choke very often, but occasionally he did when he was eating when he couldn’t swallow properly, so we had to use the machine. I learnt to set it up and use it quickly. To begin with it seemed really complicated but after I’d used it a few times it was fine, it just needed practise.
Whilst we were with the specialist, they spoke to us about artificial ventilation. To begin with they were suggesting help with breathing at night before it was required full time. This is very much an individual choice. As I mentioned earlier Craigs lungs were very good for someone with ALS at the stage he was at. He didn’t want anything that would prolong his life and so refused any form of breathing aid, apart from the cough assist machine. Whether this would have changed if he had needed it, I can’t say for sure because he died before this was something we had to consider.
We were told at the beginning that it was likely that Craig would die from a respiratory related disease most likely from pneumonia.
We had a scare once when he got a piece of food stuck in his throat and despite the best efforts of hospital staff they couldn’t dislodge it. We had to go to ENT specialist who put a camera down his nose to try to locate the piece of food. They were worried that if it was too far down and it got dislodged it would go into his lungs and cause an infection. As it turned out the discomfort of the tube going down made him cough and it moved the offending item, much to our relief. He was rewarded with chocolate cake from the nurses, so he was happy.
There are different types of ventilation such as non-invasive ventilation which uses a machine to support the flow of natural air though a nose and face mask. This is probably the most common. The other type is tracheostomy ventilation which uses a machine to support breathing through a tube inserted through the neck, into the windpipe. This type of ventilation usually requires ongoing clinical support.
There is a lot of support and information related to breathing issues and the uses of ventilation. As with many things related to ALS whether you use breathing or ventilation aids is a personal choice and you need to consider what is best for you and your family.
Craig’s decision to refuse any form of ventilation had to be recorded to ensure that in the case of an emergency he was not given any form of assistance with his breathing. This was part of him taking control about his future and his end-of-life care. I supported all of Craigs decisions regarding this, even though it was hard. I would of course have wanted him to stay with me for as long as possible, but ultimately it was his choice.
Author: Anita Newton