Really struggling with the incontinence

[Marnie63]

My poor mum, after an ischaemic stroke in August which left her left side weakened, is now doubly incontinent. I have carers coming three times a day to help me. Sometimes these visits time in with a pad change, and sometimes they don't, that's just the way it is, and I just have to get on with it when I'm on my own. But the evenings are really hard. I'm tired by the end of the day, the evening carer usually comes around 8-ish and mum's pad will be dry. An hour after she's left, the pad needs changing. It's SO hard doing this alone. All the rolling from side to side, mum shouting that she's cold, washing, drying, re-applying pad. One of the carers suggested I put a disposable incontinence sheet between the pad (I use all in one pads) and the nightie, which at least saves me having to change her nightie as well. By the time I've done that, she's halfway down the bed, and she's not small nor light, so then the added challenge of dragging her up the bed on the Wendylet sheet on my own.

Anyone else have these challenges? Any ideas on making the evening/night time changes easier? I suppose I could just go to bed after the last care call and leave her in the same pad all night, but I can't do that knowing that she has probably wet the pad. In a way, I find the bowel movements easier to deal with! I am still in touch with the Continence Clinic, who are trying to help me by sending different samples of things to try, but at the moment the only thing that seems to contain her night time toileting activity is a very 'industrial' and highly absorbent all in one pad. I have ordered some booster pads in the hope that adding one of these into the 'industrial' pad that I use will help to contain everything.

 

[Tin]

Am just going to post questions and suggestions as I come up with them. If she is dry at 8, but then probably wet by 9 do you need to wash and dry? just this one time can you change pad only? These pads are designed to draw the liquid away from skin. Do you use a barrier cream?

 

[Amethyst59]

Is her nightie getting wet with each wee? Sounds like a different pad is needed. And if you do want to wash her...could you use wet wipes at night instead? I don’t have this problem with my PWD, so sorry if this is not appropriate, but when I change my grandchildren in the winter, I put the pack of wipes near a radiator to warm them a little.

 

[Prudence9]

Marnie I so sympathise, i'm in the same situation with mum and today I'm so exhausted I'm snoozing on and off when I should be doing all sorts.

What I'm about to tell you will probably sound horrendous but it's taken 15 months of trial and error and definitely works for us.
I only change Mum two or three times a day. Mum has a horrible skin condition which is mostly under control at the moment and trying to change her more frequently was making her far too sore and her skin was at risk of breaking down. My poor little Mum is continuously bowel incontinent - I think I remember you mentioning your Mum is too? It drains your soul sometimes...

However, as I said, over the months I've "refined" the process:

Daytime: tena slip, maxi, washed with warm water and Proshield spray and tena wash cream.
Dried with very soft wipes, and at the back, Medihoney barrier cream applied to inner area and Cavilon barrier cream to wider bottom area.
At the front, just Cavilon after nice warm wash.
At night, I use Tena Flex, (I find these much better to fasten than the Slips but Continence Team provide them which helps stretch Mum's money), and after washing, use Cavilon barrier SPRAY every other night, then Metanium (nappy cream) at back, on inside parts, Cavilon cream on outer, and Cavilon spray and cream on front after wash.
Continence Nurse said they don't recommend Metanium as it's oil based but I don't care as it works!

Something else that 2 GPs, 2 DNs and the Cont. Nurse didn't think of mentioning was that apparently Loperamide is often used in elderly incontinent people - my Pharmacist mentioned it and I asked a wonderful Out of Hours GP about it and he prescribed it for us to try, it's just immodium. You may be using it already, apols if so, I only give it to Mum when she's very bad, only 1 at a time, twice a day for 1 day and that dries things up a little for a couple of days while her skin recovers from excessive wiping.

I'm so sorry, I HAVE gone on - just wanted you to know how I manage it and maybe give you some suggestions and let you know you get more used to it but it takes ages - oh and Mum's bottom is like a wee baby's bum

If you want me to clarify anything please just say - I have garbled! And have a big, supportive, empathic hug

 

[Tin]

Its a shame that Kanga do not do an adult version of their baby nappy waterproof pants the ones with press studs at each side. It seems to be that these would be easier to use and change with an extra pad inside for a bed bound person.

I use the booster pads at night for my mum, although nurse has told me that they can comprise the usual night time pads. They are thin so cannot see why she has said this, but they are really useful to have when mum has had a bowel movement through the night, which is happening most nights.

 

[lambchop]

Hi Marnie, you are doing such a good job and are obviously really caring - mum is very lucky!
I had the same problem with my mum but my mum would often not like being changed or would deny needing changing (especially if she was in her chair). Like Prudence, I had to accept that mum would be wet (or worse) sometimes - I would console myself with the knowledge that mum wasn't getting constant UTIs. The dementia nurse told me the same thing.

It is an impossible task to ensure your loved one will always be dry and clean. You can only do your best to ensure this but if you stress yourself out over it and get exhausted, you will get sick and will not be able to cope.

Could you speak to the incontience service or district nurse or GP about mum's bowel movements in case any of her medication is contributing to this?

YOu could perhaps see if mum can finish her fluids earlier during the day, so that perhaps she won't be wet so much/often during the night

I used the largest pad available during the night (Attends 10) and would do a smell test once during the night. I used a disposable incontinence sheet on the bed under mum and tried my best to have the pad as secure as possible (not always successfully). I also used Proshield cream and Conti Supersoft wipes with water and Dermol cleanser, to clean mum.

There are booster pads available WITHOUT the plastic backing so that they will absorb excess urine

If nothing works, you could ask Social Services whether one of the day visits could be substituted for a night visit (if available).

Best of luck. xx

 

[jennypie]

Hi Marnie, I've just given up toileting my oh in the night as too difficult and decided to sleep in a different room so I don't keep waking with his figetting , he wears extra absorbant slips designed to keep the urine away from his skin and there's no sign of skin excoriation. Better I get a good nights sleep so I can cope in the day, I'm sure your mum will be fine - perhaps a more absorbent pad and plenty of barrier cream would help .

 

[Marnie63]

Thanks for the useful replies and tips everyone. Mum isn't the one with serious bowel problems by the way. I'm grateful for that, but sorry that there are others having to deal with this. Some of the following may be a bit graphic!

Mum has recently (last week or so) been able to do a strong enough stand on a Rotunda stand aid for me/me and carers to transfer her with this from bed to chair to commode, etc. The hoist is now in the garage. I hate it, but it served a purpose and I suspect I will probably need it again one day when mum gets weaker, so must not fall too out of love with it just yet! Mum's new strength is rather precarious, so I don't want to be too confident about all of this. BUT .... I have been able to get her onto the commode over the weekend at set times and she had some pretty big bowel movements. I wonder if her body was not coping with expelling the No 2s as she had been lying in bed for long periods (I had previously used Laxido but am always worried this will set off a course of diarrhoea!). I am going to try to toilet her at the same time each day to see if we can establish a routine, and maybe her bladder and bowel will get used to this. During the afternoon commode sittings she also emptied her bladder well. I am not sure if this is coincidence, gravity or what, but it happened. She does sometimes say she wants a wee or a No 2, and right from the start, I wasn't convinced that the stroke had made her completely unaware of her toileting needs, but because she was immobile and also stuck in hospital for 4 weeks, I think she became totally incontinent 'by default'. It's hard to know really, when someone is immobile, very weak and very confused. It was how it was.

I now have a vast assortment of incontinence products in my Harry Potter cupboard under the stairs. The booster pads arrived today so I will experiment with them to see how they fit/work with various pull ups and all in ones. Now that I can get mum to stand on the Rotunda, I am using pull ups during the times I know she normally does not have a huge wee, I am also occasionally using normal pants with a large pad. The day time toileting activity isn't too challenging, it's the leaking at night that I find so hard. The last couple of nights the very large pad has worked fine (it holds more than 4 litres!), but I am still wrapping the inco sheet around her to be sure, to save me redressing her in a nightie on my own, in bed.

@Prudence9 - that's some routine! Wow. It must take you ages. I don't use much in the way of creams. I only put cream on where there are red marks. Mum has very nice skin, for a 91 year old (the skin on her neck area is better than mine!). She has no sign of any further pressure damage and the sore that is well on the way to healing was, in my view, caused by hospital neglect. It has 'behaved' like a pressure sore, but I am certain its development was encouraged by mum being left in a wet pad for very long periods while she was in hospital. I used to leave her at 6pm or 7pm and I'm sure they didn't change her until the next morning. They had her on a stupidly high dose of diuretics and she was constantly lying in urine. Disgraceful, but what can you do when you are not there to sort it yourself. SS raised a safeguarding report against the hospital re the pressure sore, for what it's worth.

Here ends my essay on incontinence. I never knew I'd become such an 'expert'!

 

[nita]

In case they might help, can I just put in my tuppenceworth on incontinence! I had, like you, a lot of experience with pads, etc. as my mother was bedbound for 3 and a half years. It is good that you are able to get your Mum up and to the commode as I think even that movement is good for someone who is immobile for long periods. It also helps with any bowel movement. I had to be careful my Mum didn't get constipated with all the lying still. In the last few years, she couldn't move herself at all - an effect of the Alzheimer's I think.

Can you also get your Mum sitting in a chair some of the day, perhaps with her feet up? My Mum did have to be hoisted by carers but, after she developed a serious pressure sore, I stopped them doing it for some time while it healed. I regret I didn't resume it when it was better although she wasn't really happy with it and found it uncomfortable sitting on the commode. She couldn't keep herself upright and slumped to the side too.

Anyway, the pads I found best (I tried several) were Molicare Premium Slip Maxi - in medium size - she was about 9 stone. I used to get them on Amazon and other places I found at times to be cheaper. The ones the continence service supplied were no good. Mum had four visits a day and I found it best when I had the carers coming about 10 pm but that was only at first. They changed their times but 9 pm usually wasn't too bad. They said a 10 hour gap from evening to morning was usual for their timings. Unfortunately, sometimes they were very late in the morning.

To prevent pressure sores which can be caused by wet pads, she was creamed every pad change with Proshield Plus (again I had to buy this as the DNs stopped providing it). An alternative is Cavilon. You really ought to do this as a preventive measure. It needs to be put all around the groin area and over the bottom. (Sorry to be graphic.) This did seem to work, together with the position change.

I also bought, again from Amazon, Lille disposable bed pads 60 x 90 cm (just checked this on my old orders) - they are quite big and cover the whole area under the person. This helps stop the sheet getting wet, though not always. I wasn't really supposed to put anything on the bed, the DNs said, as she was on a pressure relieving mattress and this could stop it working so well. Nevertheless, I had a pillow behind her and one on the other side for her to lean her arm on to stop her elbow getting sore. I used special pillowcases which I could wash if they got wet.

I know how hard all this is and at first I agonised over the carers not coming at the right times for her, especially as, like your Mum, she knew she wanted to "go to the toilet". It was hard telling her she had to "go" in her pad as she really hated the idea. Eventually, it didn't become so much of a problem in that she slept a lot of the time and it didn't bother her so much.

 

[Marnie63]

Thanks @nita , again, all very useful. Mum sits out a lot now. Just after the stroke she was very sleepy a lot of the time, but now she seems to have come out of the slumber and gets restless if you try to put her to bed in the day time. For weeks I was giving her breakfast in bed, but now I get her up and into the wheelchair so that she can eat at the table. She finds this easier somehow, using the left, weaker arm/hand is easier at the table, than trying to eat in bed, at an odd angle. She always sits on the Roho cushion as I've been told this is important to help the pressure sore heal. Then I transfer her to an armchair by the front window so she can watch people/horses/dogs in the road and look out for the postman. Fortunately the Roho fits nicely into this armchair. I also do her exercises here that the physio has recommended. In the afternoon I move her to a 'tilt in space' wheelchair that the hospital ordered for us and again the Roho fits onto this well. She sits in the lounge with me for the rest of the day, until the evening carer call. Sometimes I move her back onto the wheelchair after a commode visit and we eat dinner at the table again. I'm pleased I have two chairs I can sit her on. I have a lovely HSL riser/recliner that was ordered before she had the stroke, but am nervous of using this until the pressure sore is healed. I've been told it will be OK to use this, in time, but to keep changing the position and not to leave her in it for too long.

Anyway, I've gone off topic slightly! I am still a bit unclear to be honest about what's best re creams and position changes. I have had so much conflicting advice from carers, physios, OTs and District Nurses. One DN insists every time she comes that I should be putting cream on mum's feet. But the podistrist who came to inspect some blood blisters on her heels that were puzzling everyone, said I should NOT use any barrier creams. I am following the advice of the foot expert. The sores have healed and mums heels are fine. Another nurse instructs me to take all the sheets/incontinence pads off the bed and just have one sheet between mum and the airflow mattress - but it's not her who has to sometimes struggle to single handedly change mum at odd times - how the hell am I supposed to do that and keep the bed dry?!! What puzzles me is when someone HAS to be creamed and what the exact risk levels are. If mum is only sleeping in bed (albeit for a bit longer than normal), then is she really at such a risk? She does move around in the bed, onto her side, moves her legs around a lot. I know she's not walking, but she's moving around more - sitting on the side of the bed, onto the commode, on various chairs, standing up. I know the fact that she is not walking around and that she is in contact with a wet pad occasionally, and not able to be showered or bathed, means she's at more risk of sores, etc than normal, but I'm not sure that I need to be using loads of cream? If the carers or I spot any red skin, or any sores caused by the pads, or anything else out of the ordinary, then we do put some Proshield on.

Tonight the carer visit was timed perfectly as mum managed No 1 and 2 on the commode again and the carer and I were able to apply the pad while she was standing. So much easier than on the bed. I know that if/when mum deteriorates further, we will be back to hoisting or even totally bedbound, but while she is making improvements, I refuse to accept that she cannot make further recovery from the stroke. So many people have assumed that because she's 91 and has advanced dementia, she cannot recover, but she HAS got better after 3 months. I refuse to give up trying for more improvements if it means a better quality of life for her, even if that may only be for a short time. I'm off topic again, but I'm determined to prove to those physios that gave up on her that she WILL improve!

 

[Amy in the US]

Marnie, it's all about your mum's care needs and how you are meeting them. I wouldn't worry about being a bit off topic. I think it's likely helpful for you to have a place to discuss it all and ask for input, and it could well be useful to others in a similar position.

So please just post away. I am glad to hear you, overall, in better spirits than even just a few weeks ago.

 

[Tin]

Good to read your update and I agree with you, mobility is all important to improve quality of life. So keep up the good work.

 

[Prudence9]

Oh Marnie well done at getting your Mum on to the commode and in to her chairs, you really do have some courage, grit and determination!

If your Mum's skin is holding up with your way of dealing with her changes then probably best to carry on as you are, you will notice any changes and act promptly - look how her ulcer has healed!
I get very stressed too about possible pressure sores on heels etc, I've found Dermol cream good for dealing with any redness and tend to apply it at each change anyway - prevention being preferable to the alternative I suppose.

It's difficult trying to keep the bed dry while changing - Mum has often had accidents while I've been changing her but I roll her and put Tena bed pads down under her (and leave one under her all the time just in case things overflow but luckily that's not happened too often) and they catch it all and save the bed.
I've heard that Nurses don't approve due to the pressure mattress, but as you say - how on earth do we manage on our own and with no training? I refuse to be frowned on by anyone who doesn't do this full time, no breaks, no holidays, no lies-in.....I've been doing this for six years now through varying degrees of incontinence and declining mobility and stood and cleaned and wiped and "caught" in the toilet, on the commode and now in the bed and so far no sores and her skin condition has not deteriorated (even though it took about three years for them to even diagnose it - finally - after a massive flare up)

You really are doing a remarkable job and as Amy says, you're sounding so much brighter and positive - it's so good to read and thank you to you and Nita for all the extra tips I've picked up from you both.

 

[nita]

@Marnie63 - the situation with your Mum is much better than I thought and you're doing a marvellous job. I mistakenly thought your mother was practically bedbound and as she is not. most of what I said is not relevant at this stage. You are right to try and preserve any movement and mobility while you can. It is good she is able to feed herself, despite having had a stroke. I agree - progress and rehabilitation is possible and should be encouraged - it's great that you're helping her to do her exercises. I'm pleased to hear she is able to sit at the window and look out and that you can change her seating throughout the day.

I hope you are able to get some respite at times as it is hard to do "full on" caring on your own. I had a service from a care company that would sit with Mum for a couple of hours while I went out. This was provided via our local GP and I had 30, then 60 hours per year provided free of charge. I also had my brother who was a great help.

 

[Marnie63]

@nita - yes, I have a very good care agency supporting me with mum, they have been with us right from the start after mum was discharged from hospital following her TIA, nearly two years ago. Apart from the three daily care visits, I have two longer sessions on Mondays and Fridays so that I can get out.

I have 'discovered' booster pads now and have used them a few times in combination with other things I have. They are really helpful in just adding a bit more absorption capacity. I have also tried the fixation pants that the Continence Clinic sent me with some very large pads that I had ordered myself. I thought these pants would not work with mum as she's not a slim lady, but they actually worked very well in pressing the pad snugly around her. I was impressed. I have packets and packets of products now so have to start using some things up! The Tena slips that the clinic provided (and I have LOADS of those!) are way too thin, but at least I can use those up with the booster pads. Hopefully with mum standing/stepping from one place to another, I may be able to have a break from the nappy type pads and move to large pads with the fixation pants, or maybe even a large pad in normal undies. I do have pull ups, but they are expensive if you need several a day. Her toileting habits are slowly changing now that she is upright more, and moving more from one chair/position to another. I am nervous of keeping her in one place for more than a few hours until the pressure sore is actually all healed up. Over the past few days she has had some mega bowel movements - she must have been really bunged up! She definitely still has some sense of bowel movement/control, but only seems aware of bladder operation after the event.

One thing which is really helping is wrapping a disposable incontinence sheet between her pad/pants and her nightie at night time - this does a really good job of protecting the nightie/sheets from any leakage. One of the carers suggested this, a really good idea. Also when we move her up the bed the sheet stays with her.

 

[Tin]

I have found the booster pads really useful, especially at night time. It seems I really have to pad mum out to prevent any leakage for us it is runny bowel movements, on top of all the padding and pads mum wears 2 pairs of pj bottoms, first pair with socks over so we do not have a drip drip thing as she is getting to the commode or bathroom and second pair to stop mum from removing the first pair!!!

Although I have not done it yet, I am going to place an order for disposable bed sheets, washing bedding every day is beginning to show its toll on me and I seems to have sheets etc permanently hanging around my house.

 

[Marnie63]

I have found the booster pads really useful, especially at night time. It seems I really have to pad mum out to prevent any leakage for us it is runny bowel movements, on top of all the padding and pads mum wears 2 pairs of pj bottoms, first pair with socks over so we do not have a drip drip thing as she is getting to the commode or bathroom and second pair to stop mum from removing the first pair!!!

Although I have not done it yet, I am going to place an order for disposable bed sheets, washing bedding every day is beginning to show its toll on me and I seems to have sheets etc permanently hanging around my house.

Tin - the disposable bed sheets are a Godsend in this situation. I have a few of the washable ones too, but haven't really used them yet. I would suggest getting the largest sheet you can for more coverage around your mum and on the bed. I could not cope with washing the Wendylet sheets every day (even though they are fast driers!) which is why I am so keen to find solutions to the night time leakage. I do recommend wrapping the inco sheet around mum if you can. Will probably be harder to achieve if she's wearing PJ bottoms (I wrap it between the pants and the nightie in mum's case), but it so helps me as it means dry sheets in the morning. They are also very good at protecting the bed if you move mum around on it (to prevent any soiling on the sheets). Once mum had a leak on a chair, fortunately on the rubber cover of the pressure cushion, but I then also found it useful to use one of those inco sheets to wrap around her bottom as I transferred her from chair to wheelchair and then to commode to change her - it stopped the damp from the trousers transferring onto anything else.

By the way, I have some really large pads that I used in the fixation pants - they have a large, wide 'backside' to them so may work well for faecal incontinence. They are by Forma-Care - Form Premium Dry X-Plus. They do not have a sticky backing so have to be used with tight fitting pants and I have used the 'fixation pants' provided by the continence service. I have found a brilliant on line supplier of incontinence supplies - probably not allowed to advertise here, but pm me if you want the name. They were recommended to me by another (very helpful and very kind!) forum member.

 

[Tin]

Apart from nhs prescription, I have what you called industrial pads, really good but cannot seem to get this thickness from nhs. Also have fixation pants that go a little further down her legs, but not much, unfortunately these are a little too big for mum. So I have put these on my shopping list with a much longer leg and obviously a smaller size. At the moment I am trying to solve this leakage from left side/leg. Its the side she sleeps on.

Although it goes against my way of life, the environment and as little foot print as possible. I will have to use disposable sheets, there is just too much laundry. So with a bit of adjustment and fixing a booster pad in place I am hoping to solve this one but I am thinking about buying plastic pants as well!

 

[Marnie63]

Update - I'm finding the fixation/stretchy pants really good. I use quite a large/thick pad with them. Mum had a very big overnight wee night before last and although there was some seepage and everything had to be washed again, it wasn't a full blown leak like before. The pants make sure everything sits tight and snug against her, and this clearly holds more in the pad. Mum has had an infection which we are just treating with antibiotics. I don't know if this has added to the overnight woes, but we'll soon find out. I am now able to get her onto the commode at regular intervals during the day, and this seems to be 'training' her to have a wee when she's on it. She definitely has bowel control back after the stroke.

I'm expecting another box of incontinence goodies any day, so will now work on using up all the various things I have, packs and packs of them! The NHS supplied pads just don't work overnight but I can use those up with booster pads. The pads that the NHS supplied for use with the fixation pants are too thin as well, but once I've used up all my supplies, I'll ask to see what else they can offer - no point them sending me things that are no good to me. It seems that they try the thinnest (cheapest?) thing they can first and it's only if you keep calling and saying it's not absorbent enough, then they start offering something else.

 

[donal_ireland]

Managing my mother's incontinence was the hardest part of carering for her when she lived outside of a nursing home. It almost broke me.