don't read if you're eating!

[charlie10]

I hesitated to post this in case it's tmi, but haven't anyone else I can ask for ideas.

PWD has limited mobility, been in hospital for a few weeks (after fall) and has started eating properly again (we discovered he'd almost stopped eating at home). There was a suspicion he was having continence problems at home but this was explained away as one-off diarrhea combined with mobility. Now (in hospital) he is still having problems.....about 5 mins after eating he gets the urge to go, tries to get to the loo fast and it is dropping out as he goes (sorry!). He refuses to wear pullups so they make him wear a 'net' to catch it. It seems as if the muscles that hold it closed are now always open and he is totally unable to hold anything back. (diarrhea is not a problem....at the moment)

Any ideas as to whether this could be a purely physical thing, or does it ring any bells as a dementia symptom? The hospital doesn't seem concerned except to want him in pullups, BiL wants to give him Immodium

 

[Grannie G]

Certainly no Immodium.

If the person with dementia accepts the hospital net I can`t see it poses any bigger problem than changing incontinence pullups.

It does sound like a weakness in the muscles if this person has no control between the ward and the toilet.

 

[charlie10]

thank you @Grannie G ....I think you're quite right. I have done more research and learned more than I ever wanted to know on Fecal Incontinence now.....naively I assumed that FI was all to do with diarrhea.....for some reason I didn't connect it with all bowel weakness. Is FI a symptom of dementia, or just a hazard of old age or physical damage? Wondering if it's another pointer towards a D diagnosis?

 

[Grannie G]

I know muscles weaken as the body ages unless regular exercise of all muscles has been practised.

One of my friends aged over 80 said if she doesn`t leave the house during the weekend, when she does go out she feels weakness in her legs when she walks on the pavements. That`s all it seems to take.

 

[AliceA]

Bowel muscle tone can be a symptom but not always, there can be other causes.

A diagnosis is not a magic bullet, every case of dementia is different. It is a very important tool in getting the best care and in the UK some 'benefits' such as Attendance Allowance and a reducduction in Council Tax. These do help with the extra costs.

Everyone needs to do pelvic floor exercises to strengthen control. This may be too much for those with dementia but they can help according to the Continence Nurse.

Please do not try Imodium, leave it to the hospital to sort out they take it in their stride.

 

[charlie10]

thanks Alice....OH has told his brother not to give him anything the hospital doesn't know about, but he's only there for a couple more weeks.....we have very little (virtually none) say in what FiL should do (if FiL doesn't block it, BiL usually does ) so it's a matter of choosing our battles lest we lose the war! As the hospital says he hasn't got dementia (cos of the minicog tests they keep giving him....so many times he can probably give them the answers before they ask the questions!) OH says his sometimes undesirable behaviour is looked on as 'unpleasant old man' rather than empathy that he can't help it.....I think that a diagnosis would make a big difference in people's attitudes, particularly BiL who says if there's no diagnosis he hasn't got it!

Trying to keep OH on an even keel, but it's hard when he can't make a lot of difference in the time he's got there

GrannieG.....listened to a podcast a while ago that said that 10 days in hospital (bedbound) is equivalent to 10 years loss of muscle tone, and that's partly why they get you out of bed asap, not just for the thrombosis risk. Certainly made me reconsider my 'duvet day'!!

 

[AliceA]

You sound frustrated and very concerned about your husband, it is understandable when you are out of the picture as my aunt would have said.
When we make a choice such as where we live the unforeseen consequence is that we can put ourselves out of influencing a future situation. So for your sake try not to stress. There probably is little you can actually do.

Many symptoms mimic dementia. One has to rely on the medical people to diagnose. Symptoms are very variable. Even the MRI scan is not fool proof.
Research has shown some brains were damaged yet the person when alive had no signs of dementia behaviour.

With dementia the golden rule seems to be when you meet someone with dementia you have only met one person with dementia.
Every person and the dynamics of relationship are unique to that one person or situation.
You have missed the Understanding Dementia course, you may like to look at a shorter course through Future Learn by Manchester University. Professor John Keady is there, he was a speaker on the UD course from Tasmania.
Sometimes we want a cut and dried answer, a diagnosis can actually be the start of the troubles as one negotiates what it brings. It can help the hands on carer but that is a different matter.
Einstein was quoted as having said, Experience is knowledge. Anything else is mere theory.

Some of us are 24/7 Carers, some are not but these must jump every time a phone rings and wonder whether they will have to get the car out at the drop of a hat. This constant underlying stress can be very damaging.
It can always look easier and greener from the other side of the fence.
Even a Carer cannot know exactly what it is like for another Carer even in the identical situation as we all bring our unique strengths and weaknesses.
Therefore the experience is different.
We can support each other, yes, but fully understand? That is another question.
I must admit I baulk at well meaning advice, there is plenty of it. Very little applies to my situation just as much I have just written will not apply to you or another reader.
Even if we could walk in another's shoes we would find they pinched or trip one up.

 

[LadyA]

My husband was scoring very high on the mini mental tests until he was n the later/moderate stage of dementia. His doctor knew he had it, the consultant certainly knew he had it, and the family knew. The consultant said that the tests are a quick guide, but the results can be skewed by so many factors. A person's starting intellectual level, their level of education, how mentally active they were etc. My husband was incredibly intelligent, and was a lifelong scholar. The consultant explained that the more mentally active we are, the more "pathways" the brain builds, so when dementia hits, the brain can, for a long time, find detours around the damaged areas, and so the person appears to show no symptoms of dementia.

 

[AliceA]

The brain is amazing, I was reading how plastic it is and that the old idea of no new growth is very questionable.
I am not saying the dead cells will be resurrected, no false hope! But considering we seem to use less than 100%.

 

[charlie10]

LadyA.....he left school at 14 and worked in a factory. He's not thick, but more practical than intellectual....was proud of the fact that he never read books (only N of the W).....so don't think 'high-functioning' is the right term for him! I suspect whatever he's got is one which starts with behavioural/physical symptoms ....difficult for a medic to notice as it's more about change....and segues into memory loss and overt confusion. We seem to be getting to that stage, and it might be moving quite fast....OH is noticing more and more instances now he's seeing him every day. BiL just shrugs them off and says OH is looking for faults!

Alice - I've often wondered what the other 90% of my brain is doing when I'm struggling to remember directions, or how to get my laptop back from the muddle Ive put it in!

 

[AliceA]

Could your husband stay or move back to the UK for a while to help out and be hands on for a while, your brother in law sounds under stress, according to the other thread. These things do take a while to sort out a short visit can be disruptive so does not show the full picture. As for the brain the 90% may well be having fun and a whale or a time. Parallel universes, perhaps?

 

[charlie10]

Alice ....we thought about that but if he does we have no income, nowhere to stay and it means leaving a grownup child we care for to their own devices......it sort of comes down to prioritising generations, even if we ignore our own needs for food and a roof. As the days go by OH sees more, and we're coming to the conclusion that he cannot live on his own any more, and a CH may be the best place for him. He's enjoyed the company on the ward, and I think he will be unhappy being back on his own....not good for his motivation to do anything. In the meantime, he will be going home so we have to try to make that work for however long....

 

[LadyA]

It was actually changes in my husband's behaviour that came first too - I would say many years before there were any noticeable slips in his memory. His memory was reasonably good until his dementia was fairly advanced.

 

[charlie10]

Did he have physical changes eg mobility, continence etc before his memory became noticeable? Reading other people's posts I see so many similarities, tho not necessarily happening in the same order, I find it difficult to believe it's not dementia (especially with the rate it's worsening)

 

[canary]

The order in which things get affected depends on which parts of the brain get damaged. If you have Fronto temporal dementia , for example, then memory is often not affected till much later, and the first symptoms tend to be personality and behaviour or speech/language problems. Vascular dementia can cause problems all over the brain in different locations so the symptoms come in all different orders.Unfortunaly, when you talk about dementia, most people (even medical staff) tend to think about Alzheimers, where the first symptoms are memory loss and the disease has a fairly standard form of progression

 

[charlie10]

".Unfortunaly, when you talk about dementia, most people (even medical staff) tend to think about Alzheimers, where the first symptoms are memory loss and the disease has a fairly standard form of progression"

yes, thanks to this forum I'm beginning to think that we know more than most of the hospital staff! Even the DN wouldn't venture an opinion, just saying he's got capacity cos of the minitest.....his behaviour is so different now, and he calls OH by different names etc. Funnily enough I've read posts about pwd 'hosting' for visiting family so they think nothing is wrong, but he seems to be hosting for the one he sees sort of regularly and showing his true colours to OH he hasn't seen for ages....maybe to do with OH spending more than an hour or two with him? Sometimes wonder if we're totally wrong, as we seem to be the only ones who think there's anything off about him....but how can they ignore his rudeness, sheer nastiness, claims he's not had lunch within 10 mins of having it etc? Feel like a parallel universe....maybe we're the oneswith a problem!

thanks for your reply canary....so many people on here doing the hard yards, I feel guilty that we're not doing it too

 

[AliceA]

Alice ....we thought about that but if he does we have no income, nowhere to stay and it means leaving a grownup child we care for to their own devices......it sort of comes down to prioritising generations, even if we ignore our own needs for food and a roof. As the days go by OH sees more, and we're coming to the conclusion that he cannot live on his own any more, and a CH may be the best place for him. He's enjoyed the company on the ward, and I think he will be unhappy being back on his own....not good for his motivation to do anything. In the meantime, he will be going home so we have to try to make that work for however long....

It is a shame that often we have to wait until an emergency, I hope that will not be needed.
Have you informed Adult Services and asked for a Needs Assessment, you may have to use tact but it sounds as if your FIL will be a vulnerable person when left to his own devices.
Perhaps your FIL will accept convalescence and decide to stay. A friend did that as he decided he liked being looked after. He too has many symptoms but has never been diagnosed, the family suspect autism that was never recognised when he was young, he certainly has got worse with age. It would not be possible for the DN to give you an opinion, her job could be at risk, she may report back but that would be up to her.
Must get back to sleep now, just been disturbed but a bit early to get up.