Bad day at the office / Carer fatigue

[ManjiB]

I guess we’ve all probably had a bad day at the office. I know I have and today was one of those…

I was awoken by a knock on the door and a [sheepish] voice saying “There is an OCCL error in the FreeGo pump (used for PEG feeding)”.

I have no idea what OCCL stands for but I know that it means there is a blockage somewhere in the feed system e.g. from the pump into the PEG tube.

This is not what I want to hear when I am part way through my sleep. I guess that I was not surprised as I had kind of expected this to happen as it has happened many times before and in fact it nearly happened two days earlier.

We are now using a “new” medication as part of Mum’s continuing care and because she is nil-by-mouth, her feed and medications are delivered via the PEG. Unfortunately most medications are not PEG friendly and Omeprazole (a PPI inhibitor she has been prescribed and which she has to take twice a day for at least 6 weeks). The medicine comes in tablet form and is taken orally, but for anyone who cannot swallow, the tablet can be dissolved in water and drunk. But Mum is nil-by-mouth and so drinking is done via the PEG.

To cut a long story short, if there is any solid left in the solute or the solution is sticky etc. this can cause problems and in this case, the tablet does not totally dissolve. There is a small amount that remains solid and has to be delivered for the medicine to be effective. So my co-carer who was on duty must have not noticed the tablet was not fully dissolved before trying to administer it.

To make matters worse, attempts may have been made to force the medicine through etc. resulting in the PEG tube getting blocked.

After having a look and confirming there was a blockage, it fell upon me to unblock (my co-carer cannot do this or won’t do this through fear of causing even more serious damage). Luckily, I have had to do this many times now (mostly as a result of my co-carer being the person who creates the situation) and I am pretty much an “expert” in unblocking this most essential piece of kit in the care of Mum.

Of course I was not to know that the Omeprazole blockage was going to be “the mother of all blockages” and that I would spend the best part of the next six hours trying to unblock the tube. It took all my experience, resolve and patience and wizardry to finally unblock the tube mid-way through the afternoon by which time Mum was over six hours behind on this part of her care schedule

I am writing this more to share that fatigue affects carers as well as stroke survivors. You see, my co-carer is none other than my dear little sister who loves Mum dearly and will do all she can to make Mum comfortable and happy and incidents like this scare her and worry her so much and being the person who caused the incident makes it worse as feelings of guilt come into the equation - if only I had been a bit more careful etc. etc.

Poor thing, she is so tired and fatigued but being stubborn she won’t take a break (a holiday). I can tell you she was so very relived when the tube was unblocked, but she will not learn from this experience for it is in her nature to work in a certain way and it is this way of working that leads to incidents like this. So we learn to live with this and accept these things happen and life goes on. She will worry about this for a few days and will try to be more careful and manage to avoid a repeat of the incident but sooner or later she will forget and revert to natural behaviour which is “huff and puff” and get things done. For noe, I will likely get a few “easy” days but soon we will be back to normal. You might say we are like chalk and cheese, but we do compliment each other very well and make a great team looking after Mum.

You will be pleased to know, all is well, Mum is feeding as I write this and my co-carer is getting a well earned rest after a very stressful day

Do you have a co-carer who helps/hinders you in the care of your loved one? Do tell!!

Namaste|

[Susan_Jane]

Great post . Glad to hear your mum is feeding well despite the problems you have encountered. It sounds like you and your co-carer make a great team. Your Mum is a very lucky lady to have 2 such loving and caring daughters. She must be bursting with pride

It’s great that you have managed to maintain your sense of humour whilst doing a difficult and demanding job.
Keep up the good work and remember to take care of yourself too.

A big thank you to all of the amazing carers out there .

Regards Sue

[ManjiB]

Thanks Sue - somewhere on this forum, I have said this is the most difficult thing I have ever done in my life. What I might not have said, but I suspect I probably did, is that it is also the most rewarding thing I have ever done. When Mum gives us that lop sided post stroke smile or sings us a ditty it is so hugely satisfying. Until I now, both myself and my sister have always carried on regardless and somehow we have pulled through the lows, some of which have been extreme, but now it is slowly beginning to catch up and we might be forced to take that long overdue holiday/break.

Wishing all the stroke survivors and the carers a wonderful day.

[Mrs5K]

@ManjiB well done on sorting the blockage out & and getting things back on an even keel for your mum & you & your sister.

You are absolutely right about fatigue being something anyone can suffer & being a carer is one of the most exhausting things someone can do. I think this was bought home to me more when my dad passed away & you could almost see the weight of the world lift off my mum at that moment. She had cared for him for about 40 years with the last 18 months being very difficult as he had cancer.

I take my hat off to all those carers out there.
I am sure wach and every one of you does everything with the best of intentions even if occasionally it goes awry.

Best wishes

Ann

[Susan_Jane]

Well done both of you. That’s an amazing thing to say.

My mum was diagnosed with Alzheimers a couple of years before my stroke hit and the plan was to have her to live with us, as my brother lives in Spain.

Sadly my stroke put pay to that plan and she had live in carers until it was impossible to keep her at home and she went into a care home and all I could do was to visit regularly . Every time she saw me she would say “why are you walking with a stick”.

It was heart breaking for me not to be able to care for her, she was a great mum and I would have loved to look after her as she looked my brother and I.

Regards Sue

[Lizzie22]

@ManjiB
Well done for sorting the tube and for being so compassionate towards your sister. It sound like you are both doing an amazing job of looking after your mum. The OCCL stands for Occlusion a fancy way of saying blockage, I only know as a similar thing happened with medication they were giving me when I had a feeding tube.
I hope you are also getting a well earned rest as you cannot support others if you do not look after yourself.
Blessings to you all and continued good health

[ManjiB]

Thanks Lizzie - there was me thinking it was an acronym.
I now have to find a way of using this fancy word.

I wonder what my plumber would say if I asked him to come and fix an occlusion in my kitchen sink!

Maybe I’ll try it

[harimanjaro]

After the experience you described here I think you’re more qualified than any plumber, @ManjiB.

[IreneFC]

@Manib
Too much responsibility os put on children to care for their parents. Back in he old days all of this was don ein hospital. Now everyone farmed out to home and families under so much pressure. My wife currently help her mum after a stroke. Her Mum also has carers, but likes my wife to do everything rather than the carers, so the carers have an easy life when they come.My wife cant see it but I can see the strain and she calls her mum every day, so no matter where we are, she needs to call her mum. Its a lot of added responsibility when there are 3 siblings, but it lands on my wife. I do have an amazing mother in law. But its very hard.

[PhilipS]

@ManjiB I have lanzoprazole PPI inhibitor. I take mine ground up via a PEG dissolved in water. It used to be delivered as capsules containing small blue spheres which said do not grind on the box. It was changed to a dissolvable powder after we complained to the Doctor prescribing them. Perhaps you can get these prescribed?

[ManjiB]

@IreneFC - absolutely the case. The agency carers are a token and they have been more trouble than worth more often that not. We do prep work for them and we do wipe down after they finish in an effort to allow them to do as good a job as they can, but this just gets abused and they still do a fairly poor job. But sometimes we have to accept that any help is a relief.

Your wife and mother-in-law seem to be mirroring what we do. We accept that we have to do this or accept the consequences and like your wife, I expect it is the love we have for our Mums that keeps us going and it is not at all easy

@PhilipS - thank you for your comment. I don’t know why the doctors can’t read the notes and note we are on a PEG feed and so medication has to be compatible with PEG feed. I am pleased you are able to safely take your medication via the PEG.

Our situation has been made more challenging after the original PEG became a buried bumper and became unusable after it got blocked. This resulted in a trip to A&E and to cut a long story short (I have already documented this on this forum) we ended up with a radiologist coming up with a solution that allowed the original tube being used as a “casing” for a new inner tube which is therefore a smaller diameter and more prone to blockages if unsuitable materials are passed through.

We had asked for a liquid version of Omeprazole (which the hospital pharmacy did not have) and hope to get it soon. In the meantime, we have been given a new “dispersible” version of the Omeprazole, but when we tried to dissolve it, it was no better then the standard tablet form (which can also be dissolved).

So we are just being ultra careful and we have discussed discontinuing the usage of the PPI at the earliest opportunity.

Best wishes

[ManjiB]

Hello Philip - I wonder if you might be able to help.

Are you taking all your food and medications via the PEG and if so do you suffer from bloating/trapped wind?

One thing that has bothered my Mum for a long time is having trapped wind and we can’t work out what is causing it. Her dietician has said other people do get trapped wind but they are able to manage it using probiotic drinks, but these have not helped Mum.

Also, are you physically mobile - Mum is not and again, the lack of movement may be a contributory factor.

Thanks in anticipation.

P.S. Just to let you know, the GP has now prescribed the Omeprazole in the form of a suspension which is much easier to administer via the PEG. Thank you for your suggestion

[PhilipS]

@ManjiB Hi, I’m not going to mince my words, I do suffer from wind. Some of it is caused by the medication injections, some of it is caused by air in the pipework and some of it is caused by the laxative my wife gives me. Molaxole. I’ve found that it’s not very easy to pass wind because with a closed epiglottis it’s a closed system and the wind tends to get behind faecal matter! So it’s best to pass wind whilst sat on a toilet or commode. I don’t walk about so wind is trapped most of the time in my closed system.
Pleased the Doctor sorted your mother’s prescription out.

[ManjiB]

@PhilipS - thank you. This helps me better understand what might be happening with Mum. The stroke has left her aphasiac and so communications can be tricky at times.

She needs double up carers to help her, but we did manage to get her to sit on a commode which helped a lot but something happened during one of her care calls and so sitting on the commode was suspended.

We do leg stretches and bring knees to tummy lying in bed and these things help to disperse the trapped wind but it is still problematic.