When Nature Calls!

[Barry]

I wonder how many other people who are reading this have Alzheimer’s or any other type of dementia and will say (I can relate to this) as I think it’s a problem that many of us can have at some point within the illness… which unfortunately for me has occurred “NOW”
Some people might say it’s a ‘Taboo’ subject and, (I would rather not talk about it) yet it’s a problem of the harsh reality that some of us are constantly faced with, being the frequency and urgency of when nature calls! That can drive our spouse almost to their wits’ end… so for those of you who do not have our illness… then let this act as awareness for you…

This is told on actuality of my own situation and not hypothesis…

One of my constant frustrating problems is that when I’m sitting typing I only seem to have typed a few lines when I need to rush to the loo for a wee, although I do try to restrain myself but it’s now become impossible… and on more than one occasion I’ve actually had an accident before reaching the bathroom which obviously can be extremely embarrassing… but its not just when I’m at the computer as it happens at any time during the course of the day no matter what I’m doing… and more often than not at the most inconvenient times, sometimes I’ve no sooner been to the toilet when within 2-3 minutes I need to go again! OK, this is not such a big problem when you’re indoors and the bathroom is close at hand, but, when my dear wife and I are going out shopping it becomes a whole new ball game of (hunt the Public Convenience)
Normally prior to leaving home my dear wife will always remind me to ‘go to the loo’ but it seems that we have no sooner arrived at the shops or supermarket and I’m telling her (I need the loo) so we have to stop whatever we are doing for my relief… not to mention my dear wife’s peace of mind in case of any mishaps! I know this must sound rather strange or amusing but try and put yourself in my position and remember the old saying (When you’ve got to go… you’ve got to go) and in my case that often means “Right NOW” then no sooner have I been and I’m saying I want a drink, so it becomes a never ending circle.

I know I also have the problem of ‘type 2’ sugar diabetes, which could be adding to the problem yet my diabetes is under control with my blood sugar on par as I do maintain a strict diet, but the problem still remains, and we are getting to the point that when out shopping I might need to use ‘Adult pads’ as a safety measure.

The problem doesn’t just stop there… as my night times can be even more problematic as once I’m asleep then I’m oblivious as to when I need to go to the bathroom, and not always do I wake up until it’s far to late due to incontinence, which then results in my dear wife having to change all the bed sheets in the middle of the night, yet she has never once complained… so we have long since placed a rubber sheet beneath the bed sheet to prevent any seeping to the mattress, my dear wife has now also taken the precaution of keeping a good old fashioned chamber pot at my side of the bed… which has served its purpose when in dire emergency, both day and night!
But one of the things she has noticed of a night time with my problem of incontinence… is that it’s far worse when I have bad dreams and especially nightmares… so could there is some correlation between the two problems?

Barry

 

[creativesarah]

hi barry
i admire your honesty!
i am always in and out of the loo perhaps its partly dementia hadnt thought of that but i do keep getting infections too and with this recent bout nightmares might mention it next time i see doc
what an amazing support sumi is
all the best sarah

 

[Nanak]

Hi Barry
Mum has Alzheimers and is a long way away but I just want to say how refreshing it is to read someones personal experiences (Norrms does the same fantastic job).
There is always something to learn from this illness and to be able to come into your world gives such and insight and is so, so helpful.
So many people (my Mum included) are no longer able to converse properly and although Mum is not incontinent - as far as I am aware anyway - it is enlightening to be able to read your experiences.
Please keep it up as long as you feel comfortable.
Nanak
missing what has gone and scared of what is to come

 

[sallyc]

Thank you

Hi Barry. Thank you so much for your openness and honesty about this, and other aspects of your illness. I care for my Grandad who still lives alone. He suffers, too. Not the frequency, but the urgency and little "accidents". Our problem is that, by the time we see him, he has forgotten, so doesn't think there is a problem. You, and other dementia sufferers on here, truly are an inspiration. The insight you provide to us carers is invaluable. Thank you.

 

[normelle]

Hi barry

That could have me ,with dave.the urgency,the night times etc,but davewas willing to wear mens tenna pants,in the end he wore them day and night.it is distrsessing for you and your wife,but she sounds like me,never made a fuss,as that doesnt help you.
Good luck love normelle xx

 

[Skye]

Barry, I remember this stage with John, and how difficult it was, neither totally incontinent, or totally reliable. John too found it embarrassing. It was actually easier when he became totally incontinent, and wore pads or pull-ups all the time.

I wonder if you've thought of kylie sheets? They really are a godsend. They absorb an enormous amount of liquid but still feel dry to the touch, save a lot of changing the bed in the night, and disturbed nights. You can also get small ones to put on chairs, car seats, etc. Just google kylie sheets, not just kylie, or you get totally different links!

 

[miss cool]

HI Barry, o to have a wee. no you are not on your own. i allso have to wear what i coule a nappy. i think it is one of the better ideals that SS have supplyed. with this illness you are never on your own on TP. we are all going dawn the same path,just at difforent speeds. love miss cool. xxxxxx

 

[sue38]

Hi Barry,

Thanks for raising this subject, and for your honesty. I'm sure no one finds it amusing especially those who have experienced this problem, either as a sufferer or a carer.

I remember one occasion walking down a busy street with my dad when he just had to go. There were no public conveniences, except the local supermarket where you have to find the manager and ask for the key. As you can imagine there was no time for that. It was upsetting for me only because my dad was so distressed.

I wonder whether now you have identified this as a problem, it is constantly on your mind when you go out, and that is exaserbating the problem? I know for myself if I don't think about it I can go for hours, but as soon as it crosses my mind I need to go! Add to that the worry that there is nowhere to go, and it becomes even more desperate!

Perhaps if you did start to wear pads (just in case) and perhaps take a bottle with you when you go out, this might lessen the anxiety, and the constant worry.

At night when asleep, the kidneys should shut down, and I know others have found that dementia can interfere with this process, perhaps especially when you are experiencing nightmares.

 

[Skye]

At night when asleep, the kidneys should shut down, and I know others have found that dementia can interfere with this process, perhaps especially when you are experiencing nightmares.

This was John's problem, Sue. His kidneys did not shut down at night, and he produced gallons!

He had cystoscopy tests, but there was nothing wrong there. We tried different enuresis medications, nothing worked. The problem was simply that his brain was not telling his kidneys to shut down.

I think this is a particular problem with FTD, others have reported similar problems.

 

[sue38]

Hi Hazel,

Yes I was thinking of the problems John (and you!) had at night.

 

[Haydar]

Hello Barry,

This is my first time learning that you have urinary problems. Since how long have you been experiencing them? Have you seen a specialized doctor for the problem?

Many people even without dementia may experience the similar problems, especially in our age. Some people with dementia may not have mental or physical energy to see an urologist (specialized doctor for this type of problems). Because it is much easier for them to accept this problem is a product of dementia or Alzheimer?s instead of visiting a new doctor.

As you know urine is deposited in bladder. When bladder is full with urine we feel a need to go to toilet to discharge it. Beside psychological reasons, frequency going to toilet basically depends two main factors; amount of urine you discharged, and also the inside volume of the bladder. There are many possibilities to effect these two factors.

Therefore if you have energy please go to an urologist. And please don't just put the condition down to Alzheimer?s disease. No one knows maybe he can find a solution for the problem.

Best Regards, Haydar

Note1: I am using a drug (1 capsule each morning) to soften my enlarged prostate, which helping to increase amount of urine discharge from bladder.
________

 

[Jo1958]

Barry, hi
My hubby could have written that post, he has the same problems and now wears pads of pull up pants sometimes to make life easier and more relaxed. The urgency is awful and can be so painful, it is one of the things on our list for when we see the GP next.
My heart goes out to you and Sumi living with this horrid disease.
Best wishes, Jo

 

[serena]

Hi Barry

So sorry to hear of your predicament, one that is definitely a difficult topic to broach. My Mum could have written your post some years ago but unfortunately she had the fecal incontinence at same time, so sadly no option but to go to pads 24/7. Do hope your situation stays copable-with. This is indeed a wretched disease, my heart goes out to you and your 'dear' wife.

All best wishes

Love and Light, Serena

 

[Barry]

Hi everyone, and many thanks for all the extremely useful suggestions which Sumi and I will explore… it could be, as was said in the replies, the problem might just be playing subconsciously on my mind when we are out shopping, so it might be a case of (What If) niggling at my mind!

But what really struck home with me in some of the replies (Which is much appreciated) is when people say (Thank you for your Openness and Honesty with this subject)
Personally I think that’s the only way we should be with any of the problems related to our illness when talking about it, although I can understand that some people are more reluctant maybe from the embarrassment point of view, but to my ‘Confused mind’ being (Open and Honest) about my Alzheimer’s is just my way of trying to further broaden the awareness and understanding of our condition and not keep such problems locked in the closet otherwise that could just add to the misunderstandings… sorry best get of my soap box!! But again thanks for all your advice
Barry

 

[maryw]

Have you also been checked for enlarged prostate, which is so common in men?