Need some practical advice

[Kate P]

Hi everyone,

Sorry I've not been around for ages! I'm trying to work my way through to catch up on everyone's news - we're really broke so had to get rid of all non essential expenses - unfortunately Internet access comes under that heading.

Well, mum has taken some major down turns over the last few weeks. She has become increasingly aggressive and withdrawn - a lot of the time she seems to be lost in her own little world - I hope it's a happier one for her than this one.

We've had a lot of naked incidents which thankfully have been contained to just family situations although she has tried to get out of the house on several occasions.

There have also been quite a few incidents where mum has wet herself - she'd just gone and got changed and dad's found out later when he's found her trousers. I thought this news would devestate me but to be honest I think I've been braced for it by coming on here. However, what I don't know is what we practically do about this. Are there special pads we need to use? To be honest I can't imagine how we'll get her to put them on but any advice on what we should do or ways to manage this would be great. Can it work in the same way as toilet training a child - if dad restricts her liquid so he can tell her to go at certain times?

It's mum's 61st birthday in a week - I can't believe that this is how she'll be.

 

[connie]

Dear Kate,

Sorry to read that things have been hard for you, in many ways.

Please try to get in touch with your local Continence Nurse, either through your mum's SW, or the surgery may have one attached to the practice.

All sorts of pads available, but 'pull ups' for adults do seem to suit the ladies. I guess because we think of them as knickers.

Mum keeping them on may be another hurdle but you need to give it a try.

(One of the lady residents in Lionels care home regularly takes her clothes off. The staff are so patient as they redress her, several times a day. Hopefully mum's phase will pass)

Do hope you get some practical help soon.

 

[sue38]

Hi Kate,

I looked at the AS fact sheet on this a few days ago when it appeared we were going down that road with my Dad.

Link is http://www.alzheimers.org.uk/factsheet/502

One of things suggested is taking the person to the toilet or reminding them to go on a regular basis. With my Dad he was in hospital and just confused as to where the toilet was. It seems avoiding drinks would be advisable before going to bed if it is problem at night, but during the day you need to make sure the person does not become dehydrated.

I'm so sorry, I hadn't realised your Mum was only 61.

 

[Skye]

Hi Kate, good to have you back!

The start of incontinence is such a hard stage to deal with, because the person feels embarrassed, and tries to hide it.

Connie's right, ask for a visit from the continence advisor, either through your GP or SW.

Some areas will, provide pull-ups, in others they only supply pads, and if you want pull-ups you have to buy them. Pull-ups are certainly easier to manage. I used Boots own brand, but there are others on the market.

Please don't cut down on drinks. For one thing, dehydration makes confusion much worse, but the main thing is to keep the urinary tract well flushed to avoid infection.

You can cut down on drinks after 6pm, but make sure your mum has plenty to drink in the morning to get rid of overnight bugs!

Good luck,

Love,

PS How are you keeping?

 

[gigi]

Hello Kate!

I can't add to what Connie, Sue and Hazel have said...

all good advice!!!

Just wanted to say I'm sorry you're having so many worries at the moment..when you least need them.

Look after yourself!!

Love gigi xx

 

[hendy]

Dear Kate
I was sorry to read about your mums latest down turns. Incontinence does strike eventually, its so sad. Especially so for your mum, she is too young. You have been given loads of really good advice and I would back up Hazels advice about not restricting her fluid intake during the day. Fluid restriction would cause UTI's, something to be avoided at all costs. Prevention being better than cure
take care
hendy

 

[Kate P]

Thanks for the good advice.

In hindsight I can see that of course restricting her fluid would be bad - you'd think after this many hours spent on here I'd have at least grasped that much!!

I'm sure that many of you further on could probably dispute this point but this feels like it's going to be the worst bit - it feels like her diginity is about to start going out of the window and I hate that - I'm sure she would too.

I'm not doing too bad - I'm being very good and my blood pressure has come right down - I can feel the baby moving about much more than I did with my daughter which I'm also hoping to be a good sign.

Mum still loves to pat my really enormous belly which is nice although I don't think she completely understands.

 

[Skye]

I'm not doing too bad - I'm being very good and my blood pressure has come right down - I can feel the baby moving about much more than I did with my daughter which I'm also hoping to be a good sign.

That's absolutely brilliant news, Kate.

Won't be long now!

Love,

 

[ishard]

Kate I wonder if its time for a med review for your mum too?

It may help to see if she needs diferent meds to help with her agression etc.

 

[Grannie G]

- you'd think after this many hours spent on here I'd have at least grasped that much!!.

.

I`m so sorry to hear you`ve had such a rough time, it`s lovely to see you back online.

Internet access and TP should be on the NHS.

However many hours we spend here, when a specific stage hits, it is often so personal and upsetting, to forget all the wise advice is forgivable.

I`m glad to hear your blood pressure is in control, and hope you continue to look after yourself.

Love xx

 

[jc141265]

I agree that in some ways, probably especially for the children of dementia sufferers because we are so unused to dealing with the nakedness (and thus are really aware of this loss of dignity) that this can be the worst stage of the disease. It was very hard dealing with my Dad's incontinence as it became necessary at times for me to help change him, and I think the presence of his daughter in the toilet with him was very hard for Dad...perhaps its not as hard when it is a daughter with a mother or a son with a father?? or when nakedness is not such a taboo...but for me I had never seen my Dad undresses, the closet I had seen him to being naked was him wearing a pair of shorts and no shirt!
Again I will offer some hope with regards to your mum's latest habit of undressing herself however, as our parents decline seems rather similar in its aspects. Dad too went through a stage of doing this, but thankfully it did never end up occurring publicly and the stage for him passed, so I hope for you and your mum's sake this is only a stage for her and it will stop occurring soon, Dad's stage of it only lasted about a month.

I loved reading that your Mum likes to pat your belly...something in her must be aware of what that means for her to pat it...how lovely to think that just every now and again she knows...

Best of luck,

 

[sue38]

However many hours we spend here, when a specific stage hits, it is often so personal and upsetting, to forget all the wise advice is forgivable.

That's so true. When we were in A&E with my Dad a couple of weeks ago and he was unwell, sleepy, running a temperature, the nurse suggested it might be a UTI. I had a real Homer Simpson d'oh moment. How many times have I read on TP about UTI's and how they can cause a sudden deterioration, and it had never occurred to me.

It was very hard dealing with my Dad's incontinence as it became necessary at times for me to help change him, and I think the presence of his daughter in the toilet with him was very hard for Dad...perhaps its not as hard when it is a daughter with a mother or a son with a father?? or when nakedness is not such a taboo...but for me I had never seen my Dad undresses, the closet I had seen him to being naked was him wearing a pair of shorts and no shirt!

Nat, it was exactly the same for me. I had to change my Dad when he was being discharged from hospital. My mum couldn't deal with it, so I stepped forward. I'm not sure who felt the most uncomfortable. 'Is this right?' my Dad asked when I put his vest on. Oops no, that's back to front. I had to joke that I was more used to undressing men than dressing them! Not sure it was quite the right thing to say but luckily it was lost on my dad.

 

[TinaT]

It is surprising what you get used to. Neither Ken nor I bat an eyelid nowadays about my attending to his personal care. Yet my son recently took him to the toilet and I was on pins wondering if son was coping!

Thursday Ken and I went to a carer's group. One of the ladies was there with her mum. Daughter was busy with something and mum needed the toilet. I offered to take her. It was quite surprising for me and I did feel a little embarrassed taking down the very tight fitting hip protectors etc., The hardest thing was not being used to skirts getting accidentally caught up! Ooops! Did spot this before we left the toilet.

Incontinence pants are also good for men. Ken has been using them for about 2 years now.


xx TinaT

 

[Margarita]

I found the transition in to pads a very hard stage & so did my mother .

If your mother would wear the TENA pads that look like Knickers life would be so easy for your father , even if she tried to go to toilet with them on .

My mother would not wear them , because she still had her awareness of knowing the different from Knickers to those knicker pads, so she got into her head people would know she was wearing them

So the only way I could Introduce them to her was having those thick pads that look like period pads that stick to the Knickers , but are longer thicker absorbent material then the one you get in the shops.Telling mum don't worry we all leak in some stage in our life , so the younger people Like wearing them also just in case .

The district nurse got them from the NHS

Its getting worse now because it leak into her knickers , so mum take her Knicker of in bath room does not tell me , then go back sits down . Then as she gets up to go to the toilet does not make it in time so stops urinate standing they in fount of me , saying sorry .

It was a bit of a shock for me seeing mum doing it like that , as I could not believe a human can lose control like that with no fault of they own .

So I tell her don't worry , just call me next time your no bother when you wet your Knicker in the toilet , some time she remember sometime she does not, so I pop my head into the toilet saying you OK do you need another pad . What can I do I can't stress over it, like I use to as it only gets Mum back up . So I have loads Tins of Febreze Mist & refresh in the house

PS

Can it work in the same way as toilet training a child - if dad restricts her liquid so he can tell her to go at certain times?

Not that I tried to restrict mum liquid , but she done that to herself at the beginning of keep going to the toilet & wetting herself , that she did not want to drink that she keep bring sick all over her bed . she ended up having a fall then taken to hospital they told me she was dehydrated like Hazel said , but she never got a urine infection from it .

So from then on I told her if she does not drink she

 

[Kate P]

As always thanks for all the good advice and support - it's so strange having to talk about this stuff but much easier to do it here. Maybe it's because you can't see me!!

I find it a sad transition that as I'm teaching my daughter to do things my mum is losing the ability to.

She's starting to struggle to dress herself and her co-ordination and balance seems quite off. She struggled to use some salad tongs yesterday to the point that we took them off her and served her.

i think what I'm finding so astonishing with mum is how quickly these things happen. One week she could next week she can't and it never seems to be a one off.

Dad keeps asking me what will happen next and I feel so helpless telling him I don't know because every dementia is different.

 

[Mameeskye]

I find it a sad transition that as I'm teaching my daughter to do things my mum is losing the ability to.

Hi Kate

Glad to hear that you are feeling a little better. I so remember your quote above. Mum passed my sons on the downward slope when they reached about 3. I knew that it was coming but I think seeing the children gain those skills makes you realise how basic and simple the things our parents and loved ones are losing really are.

I think that you have had good advice re the continency issue. I was lucky as my mother did not become truly incontinent until she lost the ability to be upset by it, but I remember her being embarassed in the NH in the early days after her op when she had quite bad stress incontinence as a result of long period of catheterisation. It could not be easy for her or for your Mum.

It cannot be easy for you, especially with the challenges of pregnancy and a youngster to look after.

(((((((((hugs))))))))

Love

Mameeskye