I need more help from TP

[jenniferjean]

In the last two or three weeks I've been faced with a couple of big changes.
Firstly, as I mentioned on another thread my husband has started hallucinating. Secondly, he's had a couple of accidents wetting himself completely and on the odd occasion he has just slightly wet himself.
My thought was having read about PWD being prone to UTIs that maybe that could be what is happening, seeing as these two things have come on suddenly.
Today he has had his urine checked and the doctor doesn't now think that that is the cause. He is sending the sample off for further tests but he believes it's just natural progression. I'm shocked as it has all happened so quickly.
The doctor is going to arrange for my husband to be assessed by incontinence nurse but doesn't know how long that will take and suggests I get something sorted myself in the meantime, such as pads.
This is where I'm needing help. I have no idea what I need or where to go for it and whether I need to consider anything else. Can someone point me in the right direction.

 

[TNJJ]

Hi.I get dad's pads from Ebay..(Tena) .He has pull ups as he doesn't have a bladder problem as he has a permanent catheter.But wants them in case.Pull ups are better for people who can take themselves to the toilet.You can get them in different strengths.Maxi is pretty good.Also they deliver to the door..Bonus.Just look for "incontinence products" ..If he doesn't get up or take himself to the toilet,the big pads. are good.These can be like a child's pampers with sticky bits ,or you can get them like a flat pad.But with these ones you also need the nylon pants to go with them..These are called "Fix",because they keep the pad in place..I hope this helps.

 

[Shedrech]

hi @jenniferjean
if you search online there are quite a few sites eg
https://www.completecareshop.co.uk/continence-care/

I must admit I bought the Boots version of pullups for nighttime, and oredering online gave a worthwhile discount ... most pharmacy chains seem to have supplies... it might be worth getting one pack of a few types to see what suits best

 

[Kevinl]

My wife went and stood at the bottom of the stairs looking up to where the toilet is and wet herself, I didn't know what to say and that was it I don't think she ever used a toilet again other than when I prompted her but that didn't last long, at first she'd go to the bottom of the stairs and I knew what that meant but after a while she stopped doing that want just went where she was sat or stood at the time.
I attended a talk at the local hospital's bladder and bowel service and as Shedrench says they recommended trying a number of different products. most chemists, supermarkets and specialist disabled shops sell them as well as on line.
I was told the Tena ones aren't as well suited for men by the staff at the care home as they're well padded at the base which suits women but as they're pull ups the tip of a man's urethra doesn't always end up in the same place as a woman's so they can leak on some men, I don't know it's just what I've heard said.
I'd start by looking for your local NHS incontinence service and see what they advise, the services varies a lot from area to area, they might be able to advise and supply you with product or samples or at least advise.
In the home I'd say 75-80% of the residents are in pads if not more so I think it's part of the progress of the disease in most people.
K

 

[nitram]

In some areas it is possible to self refer to the continence service, check online to see if you can do it in your area, if so give them a ring stressing how devastated you are and really need some professional advice and help.
What the service can provide is limited, there is no national guidance, for instance in my area pull ups are only provided if the client can manage changing them without assistance. The theory is this promotes Independence.

You can order samples of various products for 35p each plus postage depending on quantity ordered from https://www.incontinencechoice.co.uk/sample-services.html
Use the VAT exempt price, you can do this as you are an individual and not an organisation, this is one advantage of on line ordering, high street supermarkets and chemists are not usually able to do it.

 

[NORTHSIDE]

I've found the AGEUK incontinence website very good https://www.ageukincontinence.co.uk
Lots of advice and a very wide range of products and the prices are certainly cheaper than supermarkets. You can also order free samples of some products.

 

[Beate]

I bought pull-ups in ASDA as I didn't want to have to deal with large online orders. It's probably more expensive but I found it easier. Get different strengths - super for day to day and maxi for night.

Also get some Kylie sheets for the mattress.

 

[marionq]

Most of us dealing with incontinence will have tried a range of products. Start by contacting the incontinence clinic through your GP. I did have a lovely nurse there who has now gone off on maternity leave and am not finding the current incumbent very helpful. I use their large high absorbency pads for my husband during the day and order ID slip nappy type pads online for nighttime. I use a company called Allanda and buy a couple of months worth at a time. No VAT.

Make sure your mattress has a waterproof cover and invest in kylie sheets - worth every penny.

 

[kindred]

In some areas it is possible to self refer to the continence service, check online to see if you can do it in your area, if so give them a ring stressing how devastated you are and really need some professional advice and help.
What the service can provide is limited, there is no national guidance, for instance in my area pull ups are only provided if the client can manage changing them without assistance. The theory is this promotes Independence.

You can order samples of various products for 35p each plus postage depending on quantity ordered from https://www.incontinencechoice.co.uk/sample-services.html
Use the VAT exempt price, you can do this as you are an individual and not an organisation, this is one advantage of on line ordering, high street supermarkets and chemists are not usually able to do it.

Promotes independence??? Oh dear oh dear. Do they have any clue about dementia?
Warmest, kindred

 

[Sirena]

It may differ between areas, but in our area the continence service only supplies 4 pads for each 24 hours, if you need more than that you have to supply your own. My mother hasn't yet needed more than 4 (she's in a CH).

 

[DesperateofDevon]

In the last two or three weeks I've been faced with a couple of big changes.
Firstly, as I mentioned on another thread my husband has started hallucinating. Secondly, he's had a couple of accidents wetting himself completely and on the odd occasion he has just slightly wet himself.
My thought was having read about PWD being prone to UTIs that maybe that could be what is happening, seeing as these two things have come on suddenly.
Today he has had his urine checked and the doctor doesn't now think that that is the cause. He is sending the sample off for further tests but he believes it's just natural progression. I'm shocked as it has all happened so quickly.
The doctor is going to arrange for my husband to be assessed by incontinence nurse but doesn't know how long that will take and suggests I get something sorted myself in the meantime, such as pads.
This is where I'm needing help. I have no idea what I need or where to go for it and whether I need to consider anything else. Can someone point me in the right direction.

I’m so sorry that you are facing this situation. I used to purchase Tena pants but Mum has gone beyond that now- still waiting for incontinence team two months after last hospital admission! I purchase kylie disposables for the bed, as Mums lack of mobility means they catch any overflow!
I told the community nurse that I wouldn’t be providing incontinence pants as the quantity Mum requires is extreme at times & the district nurses ( bless them ) round up the extra overstocks - meanwhile we are still waiting for the incontinence team.
Mums beyond doing a bladder diary, so I just say actually no I’m sorry I’m not providing them - Mum was still deemed capable by her GP at this point!!!
If you share the bed still with your husband - social services recommended kylie sheets, apparently they are dry to the touch & washable. Mum wouldn’t be aware that she had an issue so carers wouldn’t change bedding so I went with waterproof sheets after advice from nurses, carers etc.
I think it’s fundamentally wrong that people with dementia should have to purchase these pads, it’s an added stress to the carers- yet another thing to deal with. Plus the PWD is often not understanding the issues.
My mum has no bladder control now & I had to be firm that carers needed to come in & wash Mum & do skin checks. Mum is supposedly self funding but social services have allocated a package of care, we haven’t had a bill yet but as Mum gets Attendance allowance it all evens out I guess.
Keep pushing for the incontinence team & ring social services & ask for a needs assessment, sounds daunting but a social worker will come out & do this with what’s best for PWD & yourself as the priority; & actually Mums social worker has been amazing - especially when it all gets to much for me. Mum & Dads GPs have been as much use as a chocolate teapot!
I couldn’t have got my Dad the help he required ( now in care home) or got Mums carers in place without her help.
Also the clinical mental health team are worth calling, Memory Clinic team is the other name they can be contacted through. You can ask the receptionist to pass your message onto someone in the team, & they will get back to you with practical help as the PWD should be on their list & often they don’t get liaised with through the GP - it’s the GP’s job to do this but it usually falls to the carer unless you have a good GP! ( they do exist but seem a rare species on this forum!!!)
Hope this helps a little, it’s a horrid disease & worse sometimes for the loved ones of the PWD.
(((Hugs)))

 

[Bunpoots]

Hi @jenniferjean

I’m sorry your husband has reached this stage. It’s a difficult one to deal with. My dad was absolutely convinced that he wasn’t wetting himself - ever! At all! So getting him to wear pull-ups was a nightmare. Eventually I found that he was much more co-operative with carers when it came to wearing and changing pull-ups so I arranged for him to have carers in to persuade him to change. The number of care visits increased as his incontinence worsened. This helped save my sanity! It was already too late for the carpets..

On a practical level I see you’ve been given good advice from others already. I got my dad pads, and later pull-ups from incontinence choice. They were good and the pads arrived next day in a box marked “Choice”.

It took months to get anything from the incontinence clinic and by then dad was regularly flooding.

 

[jenniferjean]

Thank you everyone for your advice. I have a delivery order from one of the supermarkets due tomorrow, so I've just added one pack of pullups to the order to see how they are. The interesting thing, which I need to see, will be my OH's reaction to them. He doesn't believe he has a problem.

So I need to get some Kylie sheets. Will I also need to get a mattress cover?

It sounds like I shouldn't hold my breath waiting for the incontinence clinic to contact me.

 

[TNJJ]

Hi.Yes you will need a mattress cover and kylies.It will help protect if nothing else.

 

[DesperateofDevon]

Thank you everyone for your advice. I have a delivery order from one of the supermarkets due tomorrow, so I've just added one pack of pullups to the order to see how they are. The interesting thing, which I need to see, will be my OH's reaction to them. He doesn't believe he has a problem.

So I need to get some Kylie sheets. Will I also need to get a mattress cover?

It sounds like I shouldn't hold my breath waiting for the incontinence clinic to contact me.

Supermarkets do good waterproof sheets & bed pads. Throw away pads & quick dry waterproof sheets!
It’s ridiculous as if you have an issue like this with a terminal diagnosis you automatically get the pads & pants no hassle, yet with dementia every thing seems to be a battle.

 

[Roseleigh]

Seems to be a good choice here. I am going to order one - do not need it yet but dont want to get caught out.
https://www.incontinencechoice.co.u...ors/pvc-vinyl-and-fr-mattress-protection.html

 

[TNJJ]

Seems to be a good choice here. I am going to order one - do not need it yet but dont want to get caught out.
https://www.incontinencechoice.co.u...ors/pvc-vinyl-and-fr-mattress-protection.html

 

[TNJJ]

Hi! I’m not sure if you have a hospital bed.But if you do ,you won’t need a protector as the mattress is already waterproof.

 

[blacezhu]

I have brought a Homylink pocket sprung mattress for my sister, she feel comfortable and it was easy to clean her urine.

 

[DesperateofDevon]

I have brought a Homylink pocket sprung mattress for my sister, she feel comfortable and it was easy to clean her urine.

Bless.
Hope it makes your life a bit easier