In the hope it might help someone (forgot to say )

[Nichod100]

My husband Richard uses a NIV at night and in the morning . This takes out carbon dioxide from his lungs . Mainly because of this I have an appointment summary from his Respiratory Consultant stated I should stay with Richard if he has a hospital admission . Our Neurology nurse has put a care plan in place which bullet points Richards past history and flags warnings . I have hand written one and sent it in with him to no avail before ! This also says I should be considered to stay with Richard . Finally I asked for a letter from our GP . This states that on a past admission I was essential for Richards survival ( which made me cry ) and that he would advocate me staying to provide care for as long as I deemed necessary . As I said the NIV makes a difference but I know how gut wrenching and heartbreaking it is to not be with your loved ones . Also hospitals are amazing but can never provide the care we do for the people we love so much and we understand their needs and issues so well .

[Courgettegrower]

Hi, your postings make me feel rather inadequate in my caring role. I guess the only thing I check daily is liquid intake and the night bag. I have some questions. Are you medically trained to know about all these tests? How far along the MSA journey would you say Richard is or has he other difficulties? Also, and here I show my ignorance what are BPM and ‘a NIV’.

Thanks

Jenny

[Nichod100 in reply to Courgettegrower]

I am sure you are an excellent carer doing your best as we all are . No I have no medical training , I have worked in a caring role in the past for a care company and in a care home . I always say I know nothing , only what I have learned through experience with Richard and this horrible illness . Richard was diagnosed just over 3 years ago and has deteriorated quite a lot in that time . We had 4 hospital admissions last year . He is obviously catheterised and his speech , swallow , coordination and ability to eat independently and drink to a point are affected . He hasn’t walked since May 2021 and his breathing is affected due to the weakness of his muscles because of MSA . BPM is Beats Per Minute if it’s high it can be a pointer for infection . NIV is Non Invasive Ventilation . It’s a machine he has to wear at night to take out Carbon Dioxide . If he needs oxygen due to usually an infection his Carbon Dioxide goes high and he can go into a coma and loose his life . I hope my explanation helps .