IV antibiotics

[LynneMcV]

Has anybody here had experience of their loved one with dementia being put on IV antibiotics?

It was an approach raised by the Memory Clinic during a phone call about my husband's current 'paranoia' which has failed to respond to antibiotics so far administered for a suspected UTI (it's not even been established yet if it is a UTI or the progression of his disease).

Our care co-ordinator at the MC suggested I discuss the IV option with my husband's GP but I'd like to find out a bit more about it first, especially if it is something he would need to be in hospital for. I think the prospect of being in hospital would be stress him out even more than he is now.

The care co-ordinator also said he was going to fast track the results from yesterday's urine test and today's blood test to discuss possible IV antibiotics with the GP.

I just feel totally lost about whether this is the best way forward or what to expect.

Any input gratefully received please

 

[InnerGeek]

From my experience with my non-dementia partner, it depends on how many times a day they are looking at giving the IV antibiotics, and what the IV nursing availability is like in your area. Where I am, they can do up to a maximum of three visits a day to your home to give IV antibiotics. Any more than that and it's hospital only. The nurses were really lovely and all my partner had to do was sit there for the duration each time. The first course was for three days only, and the home IV team came and put a cannular in my partner's forearm which was covered by a bandage, and stayed in for the duration of the treatment, so only one nasty needle jab.

I hope your husband can also be treated at home, and that they work quickly for him. Talk to his GP, hopefully they can arrange something with whatever teams operate in your area.

 

[Sloth]

Yes I have experience of this.

The IV antibiotics were always administered at hospital. The matron that was dealing at the time, said this is the only place this happens and the patient needs to be able to get there, which wasn't possible in our situation and my mum ended up there though other means.

Anyway, the IV antibiotics helped and in a matter of days and she was mum again-ish, but, it did take longer and longer with each infection.

Hope this is of some help.

 

[Sue J]

If they are considering IV anti-biotics the infection must be quite bad and making things very difficult for your husband and you. If hospital were necessary which is likely, unless there is community provision in your area they should allow you to stay with him. The anti-biotic should work quickly given this route of administration and if desired improvement is achieved quickly then they could move onto oral antibiotics to finish the course which then could be completed at home.

I hope it gets sorted swiftly for him and you.

Best wishes
Sue

 

[Sloth]

It must depend on where you live, this wasn't an option for us, even when we knew my mum was becoming unwell, hopefully it is for LynneMcV.

 

[Izzy]

My husband has had IV antibiotics three times. Each time was in hospital and for chest or urine infections. The first time it was pneumonia. My mum also had IV antibiotics administered in hospital for UTIs.

 

[jaymor]

My husband has been given iv antibiotics twice in 5 weeks, during two stays in hospital. They used his cannula.

 

[canary]

Mum has recently had pneumonia and had IV antibiotics. She had to have it done at the hospital. The problem we had was that mum kept pulling the cannula out. Eventually someone bandaged her hand up and taped it all over so that she couldnt get to it. She recovered pretty well and once she was OK to take oral antibiotics they removed the line and sent her back to the CH.

 

[Izzy]

Mum has recently had pneumonia and had IV antibiotics. She had to have it done at the hospital. The problem we had was that mum kept pulling the cannula out. Eventually someone bandaged her hand up and taped it all over so that she couldnt get to it. She recovered pretty well and once she was OK to take oral antibiotics they removed the line and sent her back to the CH.

Bill was exactly the same re cannula!

 

[LynneMcV]

Thanks everyone for you feedback, the comments have been really helpful.

I am hoping that we won't need to go down the IV route but it is good to know that there may be the possibility of having it done at home - or maybe being able to stay with him in hospital. At least it is something I can ask about if IV becomes the recommended path.

I am dreading the weekend, I sense things going downhill fast with the paranoia. This evening he was scared I was going to kill him so I have said I'll sleep on the settee. it must be a dreadful feeling for him to feel so unsafe in the place he should feel safest.

I'll try to get some sleep now, I think I'm going to need it!

 

[LynneMcV]

Still not sure what to do

The daily bouts of my husband's paranoia continue. A two hour one yesterday ending up with my husband shaking to the point of collapse followed by sheer exhaustion.

Following a long sleep my poor husband emerged from his slumbers this morning with continued paranoia, still scared that I and our son will kill him. Again the fear lasted a couple of hours but eventually subsided.

We had dinner and all seemed ok for a spell. Then around 5.15pm it started up again. He wanted me to kill him and 'get it over and done with instead of keeping him scared'. I've kept things calm, just reassuring words from a distance.

An hour into it and he wants us to be friends again which is fine by me. I've just made him a cuppa and tried to reassure him some more. He is calmer but still a little nervous looking.

I am not worried about me or my safety, there have been no threats directed at me or our son. I'm just so sad that my husband is going over and over this fear day after day, several times a day while we wait for the doctors and Memory Clinic to decide on a plan of action.

My husband is safe. He might not be happy but he is safe and not putting himself or others at risk.

I say there have been no threats but what if the next bout is more severe? I am semi-dreading things kicking off in the early hours of the morning. I expect we'll get some action once we reach crisis but it just seems so ridiculous that we have to let things get to that point before the professionals get their act together.

 

[InnerGeek]

I'm so sorry things are at this stage and you aren't getting the help and support for your husband that you so clearly need. I'm sorry I have no advice to offer, but didn't want to read and run. You've probably done this many times already, but is it worth chasing the GP and memory clinic stressing how distressing this paranoia is for your husband? Thinking of you.

 

[Sue J]

Hello Lynne

Could you phone 111 and tell them what the Memory Clinic nurse said about IV anti-biotics. I can't understand that if they thought them necessary they should be sorted out straight away, your poor husband shouldn't be being put through this if they have evidence he has an infection that requires antibiotics.

Am sure you are but get as much fluid into him as you can as it will help.

Thinking of you
Sue

 

[LynneMcV]

Thanks InnerGeek x

Sue

Hello Lynne

Could you phone 111 and tell them what the Memory Clinic nurse said about IV anti-biotics. I can't understand that if they thought them necessary they should be sorted out straight away, your poor husband shouldn't be being put through this if they have evidence he has an infection that requires antibiotics.

Am sure you are but get as much fluid into him as you can as it will help.

Thinking of you
Sue

Thanks for replying. I haven't phoned 111 yet - I am not even sure that the mention of IV antibiotics is even on his records yet or if it ever will be.

The Memory Clinic nurse suggested it late Friday afternoon, taking me a bit by surprise. He said he would contact our GP about it asap and fast track the results of the urine and blood samples.

I knew nothing of IV antibiotics other than he said "they reach the problem faster" which is why I posted this thread to try and find out what it entailed.

The hold up, as far as I can tell is that they first need to get the results from the blood and urine tests in order to pinpoint the best antibiotic.

In the meantime my husband has just experienced the most awful night. I'll chase the GP again today to see what's happening xxx

 

[Vera's den]

Has anybody here had experience of their loved one with dementia being put on IV antibiotics?

It was an approach raised by the Memory Clinic during a phone call about my husband's current 'paranoia' which has failed to respond to antibiotics so far administered for a suspected UTI (it's not even been established yet if it is a UTI or the progression of his disease).

Our care co-ordinator at the MC suggested I discuss the IV option with my husband's GP but I'd like to find out a bit more about it first, especially if it is something he would need to be in hospital for. I think the prospect of being in hospital would be stress him out even more than he is now.

The care co-ordinator also said he was going to fast track the results from yesterday's urine test and today's blood test to discuss possible IV antibiotics with the GP.

I just feel totally lost about whether this is the best way forward or what to expect.

Any input gratefully received please

I'm not a dementia sufferer but I had iv anti biotics at home a few years ago. Our local hospital have or had an iv team for vulnerable patients. I got an infection during chemotherapy and it was decided to give the antibiotic at home rather than risk a further infection on a general ward. The oncology ward had been closed a few weeks earlier and no isolation beds were available. The nurses came twice a day.

 

[LynneMcV]

Thanks everyone for your helpful comments.

We've just returned from seeing the doctor and the recent urine test showed no infection and his blood results were fine - just a slightly low vitamin D level but nothing to worry about.

So it looks like the recent behaviours are to do with the progression of the disease itself.

The doctor started talking about medication that would take 4 wks to work and which could make him worse before it gets better (not much point going down that route I said, as we are due a review at the Memory Clinic within two weeks, so it doesn't make sense to present worse symptoms than are going on now, and quite frankly I don't need the extra challenge).

We could leave things as they are, he suggested. A suggestion I quickly knocked back, pointing out that it was unfair on my husband to make him endure countless more days of fearing for his life as these now regular bouts of paranoia take place.

He was a new doctor, his first day in fact. I was a little confused when he asked me what I thought should be done (?!)

I asked if there was something that could just be given as and when needed until we had a chance to complete the Memory Clinic review.

We could have a sleeping tablet or lorazepam he said.

I had absolutely no clue but opted for the lorazepam in the first instance as I think I have read some positive accounts of it online.

So we have the tablets and now we wait. Things are fine right now. I do hope they work quickly should I have to use them. Right now I am just worried about stepping in with them before I need to. I guess I'll just have to trust my instincts.

 

[CeliaThePoet]

Did they give you some extra vitamin D for him? Low D affects cognition greatly, in anyone.

Lorazepam takes a little time (~30 minutes) to kick in, so do try to give it at first sign if that's possible, and try to be at home for the first few times you give it, in case there's great sleepiness, etc.

 

[Sue J]

I hope you both have a better night Lynne and that the lorazepam helps.

When I started with my symptoms over 6 years ago it was with extreme paranoia, hallucinations and cognition problems. I researched when I was able and eventually put myself on Vit D but it was a struggle as I was scared to take too much as I knew I wasn't thinking right but I persisted and I am convinced the Vit D stopped my paranoia. I eventually asked my GP to test my levels, last year, as was afraid I was taking too much - I knew I was much worse in winter. I had begun taking higher levels about 4000iu in summer and 10000iu in winter, my tests were all in the normal range but that is on taking these very high levels. I wouldn't stop taking them now as I know what a difference they make to me. My GP didn't bat an eyelid when I said in order to achieve those 'normal levels' I am taking these high daily amounts - it is significant to me.

 

[LynneMcV]

Did they give you some extra vitamin D for him? Low D affects cognition greatly, in anyone.

Lorazepam takes a little time (~30 minutes) to kick in, so do try to give it at first sign if that's possible, and try to be at home for the first few times you give it, in case there's great sleepiness, etc.

Thanks Celia, no, I wasn't given any vitamin D, the GP didn't seem to think it was low enough to warrant it (37 he said). However I did give him some Vitamin D that I already have, just to give him a boost. Seeing as the slightest UTI can send things crazy I suspect that being even a little low on vitamins could do the same.

I have to say that he has been much more his old self this evening. Instead of paranoia he has been apologising for things he has a vague recollection of saying and doing in recent days. I don't know if that's just coincidence or if the vitamin D has helped already.

I haven't had to give him any lorazepam yet, he is very content and happy at the moment but I'll have some to hand if things start to go pear-shaped overnight

 

[LynneMcV]

I hope you both have a better night Lynne and that the lorazepam helps.

When I started with my symptoms over 6 years ago it was with extreme paranoia, hallucinations and cognition problems. I researched when I was able and eventually put myself on Vit D but it was a struggle as I was scared to take too much as I knew I wasn't thinking right but I persisted and I am convinced the Vit D stopped my paranoia. I eventually asked my GP to test my levels, last year, as was afraid I was taking too much - I knew I was much worse in winter. I had begun taking higher levels about 4000iu in summer and 10000iu in winter, my tests were all in the normal range but that is on taking these very high levels. I wouldn't stop taking them now as I know what a difference they make to me. My GP didn't bat an eyelid when I said in order to achieve those 'normal levels' I am taking these high daily amounts - it is significant to me.

Thanks Sue, that is really helpful information. I will keep on top of the Vitamin D for my husband. I have one which is 500mcg every two weeks. He has been more content this evening and there was no need for lorazepam. We also went out for a walk around lunchtime and it was reasonably mild and the sun was out. Maybe that walk and the Vitamin D combined was enough to make a difference. I'll keep an eye on it xxx