When is an infection not an infection?

[CHESS]

Some of you may remember that my Mum had a chest infection back in January, which was treated with antibiotics. Since then, she has never been right. Her chest has been really bad and, mentally, she has been steadily declining. When she had her assessment at the memory clinic two weeks ago, her score had gone down from 11 to 7. The consultant thought this may have been affected by her infection.

I have had her back at our GP's twice, wanting to check if the infection had returned. Each time I was assured it hadn't. The last time, a couple of weeks ago, I was assured it was the "residue" of an infection, should clear up soon and no, it wouldn't account for the worsened confusion.

I was offered an inhaler but, in view of the fact that it wasn't really bothering my Mum, the doctor preferred that she didn't have one. After my Mum's wheezing got worse last week, I did get the inhaler, although it wasn't easy to use. My Mum can't understand at times about breathing in, or out, and just tends to hold her breath!

This morning I had to take my Mum to our local walk-in centre. She could hardly get her breath. The nurse put her on a nebuliser and then we waited to see the doctor. He was very thorough and diagnosed an infection! He has prescribed antibiotics and steroids (30mg per day) for one week. He has also given us an attachment to use with the inhaler, making it more likely that my Mum will actually feel the benefit of it. If I am at all concerned that my Mum's breathing has got worse, or there is any sign of blood, the doctor was insistent that I call the centre or dial 999.

Sorry this is all so long-winded, but I am beginning to understand what so many of you have gone through (and are still going through) in relation to getting these infections diagnosed and treated. I am feeling really angry although, even now, I am wondering if it is possible that this infection has only just appeared. Am I being naive?

My Mum's chest has sounded so bad that I'm sure people must have thought I was neglecting her. I've even apologized when I've left the doctor's, for being too concerned!

Anyway, I just hope this medication does the trick.

To all of you suffering the effects of your loved ones' infections, I hope there is soon a great improvement.

Thanks for listening.

 

[jenniferpa]

Chess - when you've taken your mother in in the past, have they checked her blood oxygen levels (that's that thing they stick on your finger)? I didn't have this problem with my mother, but one of my children fairly frequently ends up with "walking pneumonia" when he has a cold AND allergies. If his oxygen levels are down they then start to investigate what's going on. I suppose what I'm trying to say is: don't feel guilty about this as I often don't realise DS has an infection and he doesn't have dementia, but do investigate what can be done in future to nip this sort of thing in the bud. The nebulizer attachment should have been a no-brainer for the GP: they're used extensively for very young asthmatics for example. Hopefully the antibiotics and steroids will work their magic (the steroids I have found very effective).

 

[Skye]

Dear Chess

I know how upsetting these infections can be, John has had them repeatedly over the last seven months. Chest, urine, heel, we never know which one will surface next.

I think the problem in his case is that with a weakened immune system, the infection subsides while he is being treated, but is never completely cleared, and is always lurking ready to re-surface.

I don't know if this is the case with your mother, but it might be worth asking.

In any case, don't feel guilty. You have done everything you can, and now it's up to the medics to do all they can.

I do hope they manage to get the infection under control, and hopefully eradicated.

Love,

 

[CHESS]

Thanks, Jennifer and Hazel

The only time my Mum had her oxygen checked was when I took her yesterday. I shall certainly make sure it is done in future.

Thankfully, the medication does seem to be having an effect, at least on my Mum's appetite. She ate everything I put in front of her today, which hasn't happened for some time. I am assuming this is down to the steroids.

Hazel, I know how much John is suffering because of his infections (and you). I do hope good progress is made very soon, and is maintained.

Best wishes.

 

[CHESS]

Update

After many visits to GP, drop-in centre & A&E, and many courses of antibiotis and steroids, my Mum was still no better.

To cut a long story short, I rang our GP yesterday morning and was advised to take her to A&E. My Mum has lung cancer. They were desperate to admit her for CT scan, etc. but I managed to put up an excellent case for her release!

They are arranging the scan as a matter of urgency (apparently, it has to be done within two weeks anyway) and will contact me when it has been arranged. This will let us know exactly what we're dealing with, and will help us decide the next steps.

My sister and I are firmly of the opinion that we want my Mum to be pain-free and as comfortable as possible, having no desire to put her through any form of treatment just to prolong her life. The cancer is inoperable and not new. We were shown the x-rays, and could understand how it had been missed in May.

I haven't been on TP much lately as almost every waking moment has been spent on my Mum, but thought I should let you, many of whom I consider good friends, know what's happening.

I am ok at the moment, trying to think positive, and will let you know what's happening after the visit with the consultant.

Best wishes to you all.

Chessx

 

[Skye]

Dear Chess

Thank you for letting us know, but sorry it's such bad news.

I think you're absolutely right to want your mum to be kept comfortable and pain free. I hope you get the scan soon, so that you know what you're up against.

Please let us know when you have any more information, and if you just want to talk, I'm here.

Love,

 

[Grannie G]

I`m so sorry CHESS.

I wonder if it was a big shock or did you have your suspicions. It`s good you`ve managed to get her home, being in hospital would hardly have helped at all if no treatment would be given.

I`m glad you have your sister to share the upset and could not agree more that `pain free` is the main priority.

Take care.

Love xx

 

[gigi]

Hello Chess,

That's rotten news about your mum..I'm sorry.

Good for you for sticking to your guns about hospital admission..

Wishing you well.

Love gigi xx

 

[sue38]

Hi Chess,

I'm really sorry to hear about your Mum.

Like the others I agree with keeping someone with AZ out of hospital if at all possible. The most frustrating thing we experienced with my Dad was getting him discharged once the treatment had finished and he was physically well again. He just started to stagnate and deteriorate.

I'm sure your mum will be more much comfortable at home.

 

[CHESS]

Thanks to you all for your concern and support. I must say it did come as a bit of a shock yesterday. When my Mum was at the hospital in May (we'd had to come back early from our holiday in Cumbria) I was convinced then that it was cancer, and was amazed when they said it wasn't.

As far as my Mum being admitted, or not, the consultant in A&E wanted to keep her in because he felt the tests needed doing urgently and would be done sooner as an in-patient. My Mum was then taken to the emergency admissions ward. By this time she was terribly upset and agitated, and had fallen out with me!

We then saw a lovely lady doctor, who explained everything to us. She listened to what we had to say about my Mum, and how totally distressed she would be if she were to be admitted. She checked with her consultant who, as well as being in charge of respiratory matters, is also in charge of palliative care.

Fortunately, he made the right decision. When we came out of the office, a visitor was yelling to us that my Mum "has gone". We found her in a totally different part of the ward, emerging from a curtained cubicle, dressed but in bare feet.

Chessx

 

[Tender Face]

I was convinced then that it was cancer, and was amazed when they said it wasn't.

Dear Chess ... just three months ago my mum's GP diagnosed a throat infection which has since been proven to be cancer of the larynx (amongst other cancers now diagnosed). I KNEW ... I just knew .... and I am hopelessly not medical ....

What is brave and important about you posting here is that we need to be reminded that dementia is not an 'exclusive' disease and that other life-threatening illnesses may live alongside it .... that said, I am at times reluctant now to post too much in case it is seen as 'scaremongering' ..... but certainly mum's dementia clouded/disguised/hid symptoms which in anyone without dementia - and especially with her previous medical history - I believe would have had medics screaming 'CT scan' many months earlier ......

The concept of palliative care has been an eye-opener to me of late - and agreed - I couldn't get my mother out of hospital quick enough ... sadly it is simply impossible for me to nurse her at home given her medical needs now .... BUT she IS enjoying the life she has for however long she may have it ....

There is life and love and hope yet ..... just the goalposts have changed once again,

Do keep in touch, Love, Karen, x