Rock Bottom

[canary]

I do exactly the same, except I say - Oh, not too bad


I have a lady who comes and cleans for me on Thursdays. So I try and invite people on Fridays......

 

[kindred]

Hi Canary. I have been thinking some more on the theme of 'Hosting' by the Carer. I realise that if a visitor is expected, be it the Social Worker, window cleaner or a friend, then I tidy and clean like mad, stuff clutter into the back bedroom, hoover and dust, clean out the fire and reset ready for lighting, wash kitchen, bathroom and toilet floors, etc, etc. The place is pristine before they arrive and although I am exhausted by the effort, I stitch on a bright smile. If they ask how I am I usually reply 'Nae sae bad' and make light of any difficulties, I dread the day when someone turns up unexpectedly and finds the normal squalor.

It is the same with Doctor's or Nurse's appointments. Both of us newly washed, smartly dressed, bright and cheery. Then it is home to chaos, exhaustion, silent weeping. Am I the only one who does this? If so, how do I stop?

It is partly a primitive survival instinct whereby animals (and now people) who were not coping had lost their place on the branch or the pecking order. So we put our best face forward and anyway, pity sucks and no one wants to invite it. You could try doing partial tidying, you will probably feel uncomfortable for a bit though. Try it and see and please, don't get annoyed with yourselrf!
with love, kindred.xx

 

[canary]

It is partly a primitive survival instinct whereby animals (and now people) who were not coping had lost their place on the branch or the pecking order.

Thats interesting kindred.
I know that in the brain of someone with dementia areas are being lost and parts of it are not working properly, but there is a bit that goes into overdrive - and thats the bit that is responsible for survival instincts.

So it sounds like hosting is a survival instinct thats gone into overdrive and probably not done consciously.

 

[kindred]

Thats interesting kindred.
I know that in the brain of someone with dementia areas are being lost and parts of it are not working properly, but there is a bit that goes into overdrive - and thats the bit that is responsible for survival instincts.

So it sounds like hosting is a survival instinct thats gone into overdrive and probably not done consciously.

Well, as you know, we know little about the brain but we know more about animal and bird behaviour, so what you are saying sounds very likely indeed. It is very dangerous to be disadvantaged or different in the animal and bird kingdom. And one of the first most necessary things the brain learns is how to survive.
love and best, Kindred.

 

[Amy in the US]

I have also often wondered about host/hostess mode.

My mother's wonderful neurologist is of the opinion that it is not under voluntary control by the person with dementia.

When my mother was in earlier stages, it was harder to tell, but as she advances, it seems more clear to me that it is involuntary.

The neurologist asked me to think about how I behave at a doctor's appointment, versus at lunch with an old friend, versus at work, and so on. I do behave in a markedly different way at a doctor's appointment and I suppose it's not really deliberate.

My mother still introduces herself quite politely and formally, yet warmly, with eye contact and a handshake, to most people she "meets." This is, of course, the staff at the care home, who are very patient about being "introduced" to her many times per day!! If the carers greet her familiarity and by name, she is less likely to do this, and I haven't seen her do this with her favourite carers, but that doesn't mean she doesn't, of course.

Her parents and grandparents were very strict about manners and decorum and some of that is clearly deeply ingrained, sometimes absurdly so in contrast to other dementia behaviours.

It is such a mystery at times.

 

[myss]

I must have been tempting fate when I mentioned in an earlier post that OH has never wet himself while at Day Care. Today he did and they phoned me because they had no pants or trousers to change him. It was -5 degrees this am so it had taken me ages to defrost the car and then drive, very carefully into town for the weekly food shopping. I was lucky that I got a space close to the supermarket because the car park was like an icerink. Just as I pulled in mobile phone rang and it was the Day Centre. I had to drive back home, Oh's volunteer 'buddy' drove him home and I washed and changed him, made up a bag with more clean pants, pullups and trousers. OH and Buddy headed back to Day Care and I set out for the supermarket again. I had intended do some other errands in town but had to rush back home, unpack shopping, put on load of washing and then at 3.00pm make myself some 'lunch'. OH arrived home then and immediately was doubly incontinent. Thankfully the poo was caught in his pull ups, but trousers, socks and bathroom floor soaked again. Cleaned up dressed him again, suddenly did not fancy my cold lunch. Same performance again as I was dishing up dinner at 6.pm, put him into PJs and dressing gown, reheated food, put 2nd load of washing on.

Yea - Am I not the lucky one to have a 'day off' every week.

Oh my @Wifenotcarer I've been reading your thread from the start today... apart from the hiding of wet clothes, you could have been talking about my dad. Even down to hiding the banana skins, we have found them in bags, in shoes, behind the TV, etc.

The above post is another mirror into my dad's life. I used to say that his wet accidents seem to take place at his home but never at his day care. And then out of the blue after two years of attending, they called us a couple weeks ago to say he had wet himself. And now this week they said if he is to still attend, someone needs to be with him - which is not possible as when he's out the house with non-family, that's when we can do the chores more quickly.

Funnily enough he was doing reasonably OK with the tenas pull-ups and then we had the first appt with the incontinence service who sent us pads and since then his toilet habits have got worse.
I'm thinking it was the change to his routine that may have upset something in his mind. It's interesting to read that you think the pad got in the way for your husband to go toilet, I didn't think of that but thought of getting washable pouch pants to see if they work with my dad.

And now we're in that situation you described in a previous post or two where, despite wearing pads or tena pull-ups, he was still wetting himself because he takes out his willy to urinate and either not stand that close to the toilet (we do go in with him) or doesn't hold it at all. Either way he ends up weeing over himself. Sometimes he doesn't do it by the toilet or in the bathroom, so you definitely have lots of empathy for me about the amount times you're having to clean and do washing.

I'd love to give you a solution but don't have a definitive one. One relative said to use an adult nappy where he is unable to access his own willy and therefore goes in the nappy instead. I've called the incontinence service this morning and of course all you get is a recorded message, so waiting on that to see what they say if/when they call back.

Fingers crossed for us all xx.

 

[Wifenotcarer]

Oh my @Wifenotcarer I've been reading your thread from the start today... apart from the hiding of wet clothes, you could have been talking about my dad. Even down to hiding the banana skins, we have found them in bags, in shoes, behind the TV, etc.

The above post is another mirror into my dad's life. I used to say that his wet accidents seem to take place at his home but never at his day care. And then out of the blue after two years of attending, they called us a couple weeks ago to say he had wet himself. And now this week they said if he is to still attend, someone needs to be with him - which is not possible as when he's out the house with non-family, that's when we can do the chores more quickly.

Funnily enough he was doing reasonably OK with the tenas pull-ups and then we had the first appt with the incontinence service who sent us pads and since then his toilet habits have got worse.
I'm thinking it was the change to his routine that may have upset something in his mind. It's interesting to read that you think the pad got in the way for your husband to go toilet, I didn't think of that but thought of getting washable pouch pants to see if they work with my dad.

And now we're in that situation you described in a previous post or two where, despite wearing pads or tena pull-ups, he was still wetting himself because he takes out his willy to urinate and either not stand that close to the toilet (we do go in with him) or doesn't hold it at all. Either way he ends up weeing over himself. Sometimes he doesn't do it by the toilet or in the bathroom, so you definitely have lots of empathy for me about the amount times you're having to clean and do washing.

I'd love to give you a solution but don't have a definitive one. One relative said to use an adult nappy where he is unable to access his own willy and therefore goes in the nappy instead. I've called the incontinence service this morning and of course all you get is a recorded message, so waiting on that to see what they say if/when they call back.

Fingers crossed for us all xx.

MYSS It is amazing (or maybe not) that you are having the self same problem with your Dad. Our continence nurse seemed not to have come across this problem before, which I believe is not your usual kind of Incontinence but rather a failure to remember the mechanics of going to the toilet or to do them in the proper order. Just as PWD forgets the sequence of steps required to make a cup of tea.

I was going to ask what type of Dementia your DAD has? but then thought that is probably irrelevant. Which led me on to another philosophical thought - Why is there such an emphasis on getting a diagnosis of one kind or another of Dementia when there is no cure or effective treatment for any of them. We were in limbo for 2.5 years waiting for a diagnosis before we were able to access day care, respite, AA, Blue Badge, Donepezil, etc. because OH's symptoms were apparently atypical for any type. It was however, obvious that he had Dementia and was deteriorating day by day.

Since I joined Talking Point I have seen many threads where people are struggling to get a firm diagnosis but many more threads where people are struggling to cope with behavioural changes and day to day problems, which affect everyone coping with Dementia, either personally or as a carer. These threads demonstrate the commonality of symptoms, problems, coping strategies and emotions across the spectrum of types of dementia. I do wonder if resources would be better targeted to alleviating these aspects rather than concentrating so much effort, time and money towards getting a precise diagnosis.

 

[Louise7]

Which led me on to another philosophical thought - Why is there such an emphasis on getting a diagnosis of one kind or another of Dementia when there is no cure or effective treatment for any of them. We were in limbo for 2.5 years waiting for a diagnosis before we were able to access day care, respite, AA, Blue Badge, Donepezil, etc.

I think you've answered your own question! Although there is no cure, the symptoms of some types of dementia (such as Alzheimer's) can be reduced/managed with medication, so I think it's important to get a diagnosis if possible in order to establish whether there is any medication available that can help. This in turn can help with behavioural changes which helps carers. Also, as you have experienced for yourself, some help/assistance/benefits are more easy to access with a diagnosis. A diagnosis obviously isn't the 'be all and end all' with regards dementia but in some cases it can really help.

 

[myss]

MYSS It is amazing (or maybe not) that you are having the self same problem with your Dad. Our continence nurse seemed not to have come across this problem before, which I believe is not your usual kind of Incontinence but rather a failure to remember the mechanics of going to the toilet or to do them in the proper order. Just as PWD forgets the sequence of steps required to make a cup of tea.

I was going to ask what type of Dementia your DAD has? but then thought that is probably irrelevant. Which led me on to another philosophical thought - Why is there such an emphasis on getting a diagnosis of one kind or another of Dementia when there is no cure or effective treatment for any of them. We were in limbo for 2.5 years waiting for a diagnosis before we were able to access day care, respite, AA, Blue Badge, Donepezil, etc. because OH's symptoms were apparently atypical for any type. It was however, obvious that he had Dementia and was deteriorating day by day.

Since I joined Talking Point I have seen many threads where people are struggling to get a firm diagnosis but many more threads where people are struggling to cope with behavioural changes and day to day problems, which affect everyone coping with Dementia, either personally or as a carer. These threads demonstrate the commonality of symptoms, problems, coping strategies and emotions across the spectrum of types of dementia. I do wonder if resources would be better targeted to alleviating these aspects rather than concentrating so much effort, time and money towards getting a precise diagnosis.

@Wifenotcarer I understand what you meant by 'amazing'!! I was like that when I read your posts about your husband and similarities in behaviour.

I am also a bit lost with the types of dementia. My dad was initially diagnosed with Onset Dementia and it was just left at that a few years, so regular check-ups to see if it changes or develops a further stage.

It wasn't until we called the local Memory Clinic when his behaviours had made a stark change that a letter from one of the doctors/nurses who examined him at home had the words 'Alzheimer's disease' but there was no change to his medication.
I assumed if the different types of dementia isn't down to the behaviours or medication used, then it may be down to the way and/or part of the brain where the dementia may have developed.

 

[Wifenotcarer]

This evening, between dealing with OH's usual 'go to bed at 7PM and then get back up 6 or 7 times saying he can't sleep' I was reading, on another chat forum, the story of a lady whose husband seemed to be very depressed, redundant and refusing to seek work, lazing around the house all day, without doing any housework, cooking, etc. drinking and refusing to wash himself. Meanwhile she was working full time, then coming home to shop, cook, clean. Everyone replying advised her to throw him out, get divorced, at the very least take herself off for a holiday and leave him to his own devices.

I wondered if I had posted up about my OH and what he is like on a daily basis without mentioning that he has dementia if I would have received the same advice. I'm fairly sure that if I had said he has advanced dementia, the replies would have been sympathetic in a 'poor you' vein but they would all have expected me to stay, look after him and 'get all the help you can'.

I really will have to stop having all these deep thoughts about life, the Universe and Dementia. It is doing me no good whatsoever, but at least writing them down here seems to get them out of my head.

 

[Wifenotcarer]

Social Worker is off sick again so put through to a Manager who was very keen to help (I was phoning to book respite care for OH Friday Saturday and Sunday at end of April to go to Party Conference in Edinburgh) She told me that I should be taking more advantage of respite care, not necessarily to go away but just to have more time for myself. I explained that I was assessed as needing 2 day care slots per week but have only had the one day as the centre gives priority to new referrals thinking that 1 day each is more equitable than some folk getting 2 days.

Anyway, she said she would book the weekend immediately and phoned me back within 10mins. She said Saturday and Sunday were booked for OH but Friday was problematic, only the two emergency rooms were available which OH might be able to have but they would not know until that week. She was full of apologies and admitted that she had not realised how difficult it was to book respite when required. She suggested that I could zoom up to Edinburgh on the Saturday after installing OH but was quite unaware that check in time at respite is 15.00 so I would effectively, by the time I got to Edinburgh, have missed the whole day at Conference.

I have gone ahead and booked the hotel as hotel rooms are selling out fast (there will be thousands at the conference) and will live in hopes. Certainly this has been an eyeopener for the Senior Manager, who has discovered that the services they proudly offer are often unobtainable when required.

 

[Wifenotcarer]

Bit of a blow today. Took OH to Doctors to have the variety of spots and moles on his back checked out and his man bits examined by a male Doctor. Good news first - nothing to worry about re the spots and moles, some cream prescribed for the itching. No lumps or anything untoward found in his testicles. Then the hammer blow.......

Doctor thinks it would best if OH is catheterised and has a bag tied to his leg. He explained that this is not an easy solution in that he might not tolerate the catheter and there was a risk of increased urinary infections but on the other hand, wetting himself everytime he goes to the toilet and then pretending there is nothing wrong, already puts OH at risk of infection and leaves his skin in that area inflamed.

I have to think about and discuss this option with OH (fat chance of that as he is already denying he saw the doctor today) and get back to the surgery when I (WE?) have decided. If I give the go ahead the District Nurse will visit to fit the catheter and show me what to do. It just seems like a big leap down the Dementia Path and something else to add to my caring duties. Something that I cannot expect my daughters to do, so even less chance of them taking sole charge of their Dad if I need to go somewhere without him.

 

[Lady M]

Oh Dear wifenotcarer!
What a distressing time for you, whatever way you choose the burden will fall on your shoulders!
Strangely it was only when I read something on another thread that I realised that the main carer is usually the one who changes the catheter! I was shocked, and totally dismayed that this procedure and yes! It is a procedure is not undertaken by a medical staff, be it HCA or DN.
I to have the similar problem developing with OH, missing the toilet pan, etc and tried to use at bottle at night and ended up with soaking wet beds and socking wet OH!
I have to admit there is no way it is something I would/ could undertake personally, so I know that I won’t have that delemma! I don’t know if there will be an alternative, but It is defiant a no go from me! ( at present trying to persuade OH re info pants at night, not very successfully.)
I cannot give you any advice or suggestions, but hope you are able to choose whatever is right for you and Your OH.
Please continue to update on this thread what you decide and how it develops for you both!
Good luck!

 

[Prudencecat]

My dad had a catheter fitted. The carers and family emptied the bag which was easily done but when the whole thing needed changed it was the district nurse that did that. This was 6 years ago so maybe things have changed. Dad's was for a medical problem and he was pleased to have it removed the worry of getting to the loo in time.

 

[Wifenotcarer]

My dad had a catheter fitted. The carers and family emptied the bag which was easily done but when the whole thing needed changed it was the district nurse that did that. This was 6 years ago so maybe things have changed. Dad's was for a medical problem and he was pleased to have it removed the worry of getting to the loo in time.

Thank you Prudence for your encouraging reply. I believe that it will be the same here - District Nurse will fit and deal with the catheter, I will be responsible for emptying and refitting the bag. The difficulty is in making decisions on behalf of OH without being able to discuss it with him. I know full well that if I sat him down and tried my best to explain, that his response would be ' No way Hosea - nothing wrong with me'.

 

[clarice2]

Thank you Prudence for your encouraging reply. I believe that it will be the same here - District Nurse will fit and deal with the catheter, I will be responsible for emptying and refitting the bag. The difficulty is in making decisions on behalf of OH without being able to discuss it with him. I know full well that if I sat him down and tried my best to explain, that his response would be ' No way Hosea - nothing wrong with me'.

My husband's catheter is also changed,and bladder washouts done twice a week, by district nurses. Bags can be emptied or changed by myself or carers. He is also relieved that he does not have to think about it. He is bedridden and also wears pads. When watching tv and someone was going to the toilet he once said to me that he's glad he's past all that. He accepts it as normal now.

 

[Pouli]

Bit of a blow today. Took OH to Doctors to have the variety of spots and moles on his back checked out and his man bits examined by a male Doctor. Good news first - nothing to worry about re the spots and moles, some cream prescribed for the itching. No lumps or anything untoward found in his testicles. Then the hammer blow.......

Doctor thinks it would best if OH is catheterised and has a bag tied to his leg. He explained that this is not an easy solution in that he might not tolerate the catheter and there was a risk of increased urinary infections but on the other hand, wetting himself everytime he goes to the toilet and then pretending there is nothing wrong, already puts OH at risk of infection and leaves his skin in that area inflamed.

I have to think about and discuss this option with OH (fat chance of that as he is already denying he saw the doctor today) and get back to the surgery when I (WE?) have decided. If I give the go ahead the District Nurse will visit to fit the catheter and show me what to do. It just seems like a big leap down the Dementia Path and something else to add to my caring duties. Something that I cannot expect my daughters to do, so even less chance of them taking sole charge of their Dad if I need to go somewhere without him.

There is a device called, I think, a sheath. It's like a sticky condom that adheres to the willy, and empties into the usual leg bag. And you can get an extension night bag. This apparently works well with a patient who moves about, and is much simpler to use than a catheter. It might be worth a try. Might save a bit of laundry, too - always a bonus.

 

[Izzy]

There is a device called, I think, a sheath.

The continence service gave us these for my husband. This is the sheath and there is also a leg bag on the site. I presume other makes are available -

https://www.coloplast.co.uk/search/#st=conveen

They were not a great success for us. My husband somehow or other managed to get them off. Depending on the person they may work well.

 

[Wifenotcarer]

The continence service gave us these for my husband. This is the sheath and there is also a leg bag on the site. I presume other makes are available -

https://www.coloplast.co.uk/search/#st=conveen

They were not a great success for us. My husband somehow or other managed to get them off. Depending on the person they may work well.

Pardon my ignorance but what happens when the person with the catheter or sheath goes to the toilet to pass a stool or has diarrhea? Do the appendages get in the road or get messy?

 

[Izzy]

Pardon my ignorance but what happens when the person with the catheter or sheath goes to the toilet to pass a stool or has diarrhea? Do the appendages get in the road or get messy?

No I don't recall that being a problem. Mind you my husband needed a lot of support in the toilet so there was always me or a carer there to help him. As I say the biggest problem was stopping him from trying to pull them off. The continence service gave me some to try before we decided to go ahead with them. We didn't last long though and went back to these -

https://www.incontinencechoice.co.uk/shop-by-brand/tena-incontinence-products/tena-flex.html

The continence service provided a regular supply of them but I found I had to buy more to add to that.