First Days Dealing with a Catheter – Dementia Caregivers

Another milestone has passed. I’m in a state of shock. I wasn’t expecting a catheter to be put in today. I wish I had read something to help, so I’m sharing our first days dealing with a catheter as dementia caregivers in case it helps someone else.

Catheters for people with dementia like my mum with Alzheimer’s aren’t recommended, and we have always pushed against it and looked for other solutions.  

This is our personal account, you should always discuss with your own doctor the specifics of your own situation & make your decisions based on that.

Background

For the last few years, mum has been dealing with recurring UTIs primarily from having to wear incontinence nappies and dealing with double incontinence. It’s so bad this year as none of the antibiotics affected clearing the condition. The situation has worsened as mum has become resistant to most antibiotics available to deal with it.

Urology Recommendation

Our doctor made a referral to the Urology department & they recommended examining her bladder by doing a cystoscopy . The examination showed that mum’s bladder wasn’t fully emptying. This, combined with the fact that her kidneys had become distended, resulted in the consultant saying that the only option to help mum was a permanent catheter.

I wasn’t ready for that. I hadn’t done my research on catheters for a long time. We’ve rejected it several times because of the risks of infections and because it’s likely to be barely tolerated by someone with dementia. I know mum is already tugging at her repose boot on her leg every day already. I can’t imagine how having a urine drainage bag attached to her leg would ever stay on.  

The only thing we can do is try. If it doesn’t work, then it doesn’t work. This time we didn’t have any choice – her kidneys were affected. After examining her bladder in the clinic, they fitted the catheter, so at least mum didn’t have to go through two separate procedures.

Post Procedure After Catheterisation

Another nurse started to take us through all the elements of caring for someone with a catheter. By that, I mean she gave me bags of paraphernalia and explained that I would be responsible for:-

• maintaining strict hygiene in cleaning and handling the catheter to reduce the risks of infections
• Ensure that there was urine output making sure there were no kinks in the catheter tubing stopping the flow of urine down into the drainage bag 
• changing the drainage bag every few hours
• fitting an additional connecting back each night for overnight collection and its disposal
• changing the draining bag once a week
• Make sure mum was well-hydrated post-procedure to flush out any remnants of debris 
• contact the district community nurses to remove and replace the drainage every 12 weeks
• contact the supply company to order new bags (she supplied two weeks’ worth)

She demonstrated how to drain the bag in the clinic, look out for signs of infection and then sent us away with a mound of paraphernalia needed for catheter management and a referral to our community district nurses if I needed support.  

She also advised that post-procedure, mum might experience discomfort, and I may see blood in the urine.

A lot of information, and it’s only after I leave that I have a ton of questions like how to clean her without hurting her, what type of problems I should be keeping an eye for etc. Omg, am I going to be able to do this?

Now, we’re home, and I’m panicking. Mum was fitted with an indwelling catheter, more commonly known as a Foley Catheter, that will stay in place for 12 weeks. I know people live with these without problems, but I also see some horror stories.

Dementia Caregiver Inner Dialogue

I’m second-guessing myself. Did I make a mistake? Did I allow myself to get rushed into a decision? No, no, I must stop thinking like this. Remember the kidneys, the kidneys; that’s why we’re doing this!  

But the number one reason for UTIs for mum is bowel incontinence overflow from constipation, so surely she’ll still get UTIs but maybe more severely?   I don’t know. The doctor dismissed my concerns, saying I needed to keep her clean. Why didn’t I prepare properly for this? What if mum tries to pull it out when I’m not looking and injures herself? That will be my fault.

First Few Hours At Home With An Indwelling Catheter

As soon as we got home and I had mum settled, she inspected it and pulled at the drainage bag. Her legs need to be raised to reduce swelling, but by doing so, mum can see the drainage bag. So I didn’t leave her side initially for fear of her damaging it, but that wasn’t practical as I needed to leave the room to get drinks, food, etc.

I kept going in and out in one-minute intervals as I tried to prepare food/drinks for us. At one point, I was away longer, and I don’t know if she had pulled it or not now. The bag was filled with blood-colour urine. I know this is a post-procedure expectation, but seeing a bloody drainage bag is still worrying. 

I realise now that the times I had to myself would become non-existent.  I won’t be able to leave her more than a minute or two for fear of her pulling at it.  

Changing A Catheter Drainage Bag For The First Time

I read through the leaflet providing the instructions and explained to mum what was happening. I meticulously washed my hands to empty the bag and wore gloves (even though the leaflet didn’t advise me to).

I’m worried that I might be hurting, trying my best not to pull on the drainage bag secured to her leg with straps, but the valve to open the drainage valve is stiff. I eventually get it open and drain the bag. The output is thick & mucusy at first. I close the valve, empty the contents into the toilet, flush, wash my hands, and visually recheck the drainage bag. I worried that the valve was blocked, so call our community nurses.

They advise to up mum’s liquids and wait for half an hour to see if it clears. Thank goodness for their support. They offered to come out and help me settle, but I calmed down, took their advice to wait, and confirmed I would call again if it didn’t clear. 

Thankfully the blockage gets pushed out, and the drainage bag continues to fill.

Care Workers A Godsend

Thank goodness for the carer workers that help with mum’s care. They reassure me, telling me it’s like anything new, that I’ll get used to handling it, and show me how to set mum up for the night with an additional drainage bag. They advise they only clean the catheter once a day, but my reading recommends twice a day, so I need to check that with district nurses. But they kindly showed me how to do it that night, so I knew how without hurting mum and reducing infection risks.  

They always share their knowledge. They also advised that you can get sleeves to hold the drainage bag and hide it from mum’s sight. I wonder why the urology nurses knowing my concerns about pulling, knowing that mum has dementia, sent her home with all the tubing, bags, jug etc. but not a simple thing like a sleeve to prevent pulling? 

I would have thought that would be a checkbox exercise, has dementia, add a catheter sleeve as an option to secure the drainage bag to prevent pulling.

Day 2 – Dealing With The Catheter

The drainage bags filled up overnight, and the care workers helped clean her catheter and changed her nappy. We don’t benefit from being nappy-free as mum is doubly incontinent.  

The drainage bag is still bloody. I’m trying to keep my internal voice calm, but I’m scared that this might be more serious. The doctor said it could bleed for a few days, so I have to hold it together for a few more days. A month from now, I will probably look back at this and wonder about my anxiety levels!

Mum’s in pain, but it’s hard for her to define where she’s hurting. Is it down there, or is it somewhere else? She keeps repeating it hurts. Pain killers are given on the clock.  

Again this is an expected side effect after insertion, but my inner dialogue is thinking it’s blockage or worse. Finally, mum can say that her stomach hurts, and I move her to the bed. Luckily, the pain resolved after a bowel movement. 

Her leg is hurting from neuropathy pain, the same leg the drainage bag is secured to, so the care workers move the bag to the other leg. They comment on how much better and alert mum seems today.

I think moving the drainage bag positioning and giving mum her fidget blanket have also stopped mum tinkering with the drainage bag.

Lessons Learnt So Far Dealing With Catheter

Here are some things I would do I little differently on reflection now.

• Do your research, be clear on the possible outcomes of a cystoscopy. Our appointment was a last-minute cancellation, so I didn’t do my normal level of research. I didn’t prepare for the outcome or refresh my memory on catheter issues.
• I realise that the nurse at the clinic didn’t talk about how we keep the catheter clean in detail or the proper method to clean it. It wasn’t talked about at all, so deep dive on the internet researching the in/outs of catheter care on the NHS websites. Ask to demonstrate or explain cleaning methods, angles of catheter bag hanging etc
• Push for tools or aids that help those with dementia – like a Catheter sleeve, no idea about this during our consultation
• Ask for a follow-up telecon to answer any final questions with the consultant
• Oh, and how to open the valve of the overnight bag to drain it with it exploding urine over me like what happened at my first attempt!

Realise it will take time to get used to this. Now we have to settle into the day-to-day dealing with a catheter. Hope that the blood clears, that we’re able to keep mum’s catheter clean & prevent infections, and hopefully, mum will start to improve. I hope we made the right decision. Time will tell.

Another milestone passed.