Hello I'm Pauline. Having a tearful day. My husband has alzheimers. He is becoming worse. Urinary incontinent. Wears pads but still wets down his trousers and around the toilet. Disguards the pull on pants wherever and doesn't see how unacceptable this is. Coughs up phlegm and runs to the sink to spit it out but never rinses it. He is deaf but doesn't see the need to wear the hearing aids. To get him to hear me I have to shout. He tells me not to shout at him. He is to have an endoscopy on Saturday and I am dreading the clearing of the bowel beforehand, in fact I don't think I can do it. There, don't know if I feel any better writing this all down . Still crying.
Bad day.
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Hi Pauline, it sounds like you are having a very difficult, challenging time with your husband. You must be so upset and frustrated having to deal with his worsening behaviour.
You have done the right thing by joining this forum, even if you don't feel better having written it down.
I am fairly new to the forum and my mum has yet to get a diagnosis and has only had behaviourchanges for a few months, so I cannot advise or give you any comforting words.
But the daily posts from individuals in similar situations I have found to be very supportive.
I am certain there will be people who will post shortly, offering advice and support.
Keep asking the questions and reading the daily posts, it really is helpful.
You have done the right thing by joining this forum, even if you don't feel better having written it down.
I am fairly new to the forum and my mum has yet to get a diagnosis and has only had behaviourchanges for a few months, so I cannot advise or give you any comforting words.
But the daily posts from individuals in similar situations I have found to be very supportive.
I am certain there will be people who will post shortly, offering advice and support.
Keep asking the questions and reading the daily posts, it really is helpful.
hi @77pauline its the bodily fluids that is the hardest. i have a mat by the toilet that will collect any dribbles. i do wipe around there all the time. do you know why he urinates? mine was because of his flow stopping and starting so the doctor prescribe some tablets to make the flow more even. my husband has copd so mucus build up. that was what turns my stomach but he doesnt spit it in the sink. could you get a small bowl for him to spit into so hes not doing it in the sink? i think that he isnt going to stop so need ways to work around it.
I think you need to have a conversation with the doctors about whether the endoscopy should proceed. It doesn’t sound to me like your OH can consent to it, let alone co-operate with the process, and I’d be asking what the endoscopy is intended to achieve. It will undoubtedly distress him in some way, so there needs to be a very good reason to put him through it.
On the more general behavioural issues, you need help. Start with your GP. If they aren’t helpful, try contacting Dementia UK and speak to an Admiral Nurse.
Finally, you are doing your best and I’m not surprised you feel tearful. Have you anyone in the family or among your friends who can support you, let you offload a bit?
Oh Pauline I am sorry you’re having such a rough time.
I completely agree with @Veritas do talk wiht the GP re the endoscopy or colonoscopy?
if it is to detect polyps or bowel cancer would you be in agreement for him having treatment for these? Or is this just going to raise more issues that are best left?
And no it sounds like you can’t cope with the bowel clear out at the moment. If medics are insistent on procedure you request you drop him at hospital prior to bowel clean out for them to manage.
Do you have any children or other trusted friends that could help you?
I completely agree with @Veritas do talk wiht the GP re the endoscopy or colonoscopy?
if it is to detect polyps or bowel cancer would you be in agreement for him having treatment for these? Or is this just going to raise more issues that are best left?
And no it sounds like you can’t cope with the bowel clear out at the moment. If medics are insistent on procedure you request you drop him at hospital prior to bowel clean out for them to manage.
Do you have any children or other trusted friends that could help you?
Hello Pauline. "Coughs up phlegm and runs to the sink to spit it out but never rinses it. " My goodness, how I can relate to that. My OH is exactly the same, and it absolutely makes me feel ill. I repeatedly ask him to spit in the loo, but his memory retention is zero so he very rarely does as asked.
dear Pauline, what can I say, but hang in there. If the endoscopy is not essential, do not do it. the phlegm is horrid, but will he use a spitoon so that he does not run to the sink each time? No, PWD is aware how unacceptable their behaviour is, unfortunately. and yes , line up the area around the loo with mats or disposable waterproof sheets (like the one you line a bed with) May have to cut it to shape to fit the pedestal.
Cry, I do! Hugs
Hi @77pauline , welcome to the forum.
This post is probably too late as I note your husband is having his procedure today but I've decided to still post in case he needs more or anyone else is facing this.
My OH has bowel polyps which have been monitored as surgery to remove was
inadvisable unless they turned cancerous.
This year instead of a colonoscopy he was given a CT scan of the bowel a cologram ,,a sort of virtual colonoscopy. Also a sigmoidoscopy which is similar to a colonoscopy but only involves the lower third if the bowel and rectum as this is where his polyps are. It's less invasive and he needed an enema which he had in hospital prior to the sigmoidoscopy.
I was asked if I wanted to administer laxatives at home,no definitely not! So..enema in hospital which he managed with help from me.
As for the phlegm,when I told doctor he was coughing up and spitting in the sink the response was ' better in the sink where it can be washed away than on the floor" not particularly helpful but I suppose I had to agree🙂
This post is probably too late as I note your husband is having his procedure today but I've decided to still post in case he needs more or anyone else is facing this.
My OH has bowel polyps which have been monitored as surgery to remove was
inadvisable unless they turned cancerous.
This year instead of a colonoscopy he was given a CT scan of the bowel a cologram ,,a sort of virtual colonoscopy. Also a sigmoidoscopy which is similar to a colonoscopy but only involves the lower third if the bowel and rectum as this is where his polyps are. It's less invasive and he needed an enema which he had in hospital prior to the sigmoidoscopy.
I was asked if I wanted to administer laxatives at home,no definitely not! So..enema in hospital which he managed with help from me.
As for the phlegm,when I told doctor he was coughing up and spitting in the sink the response was ' better in the sink where it can be washed away than on the floor" not particularly helpful but I suppose I had to agree🙂
What a wife you are, dealing with all that. Almost certainly a stupid question but have you thought about placing your husband in a care home? Its a massive decision but you have to think about yourself as well as your husband.
Having said that, there doesn't seem to be much help and advice available when considering such a move. My wife hallucinates and lives in delusions most of the time. However she is physically fit and continent. She often says she thinks she should be in a care home. I think she would hate it and I think she is much better of at home. It would be great if there was a professional I could discuss this with but such people don't seem to exist.
I do hope you find a way to get rest and the chance to take care of yourself.
Having said that, there doesn't seem to be much help and advice available when considering such a move. My wife hallucinates and lives in delusions most of the time. However she is physically fit and continent. She often says she thinks she should be in a care home. I think she would hate it and I think she is much better of at home. It would be great if there was a professional I could discuss this with but such people don't seem to exist.
I do hope you find a way to get rest and the chance to take care of yourself.
Thank you all for your responses. I told the specialist that he would not tolerate the endoscopy so he had a CT scan instead. All clear! Had it done because of blood in the stool sample. Still wearing pads but very often not needed now. I spoke to citizens advice yesterday and its made me aware of how scary my future is. We lived overseas for 43 years so our old one pensions are pathetic. Our fault. I get £154 a month but with cares allowance, attendance, pension credit and his pension I need very little extra as the house we live in I was renting from our son so now I have paid off the mortgage with funds from the overseas bank account. Its now jointly owned but hasn't been registered as such yet. Here's the thing . Citizens advice have informed me that as the money we have here and the money in the overseas account all come from his retirement annuity and as such when he has to go into a home they will take it all. If I can pay off our sons portion of the mortgage then I think the house should be registered in both our names so it won't count till I die or also need care. Fortunately or unfortunately my family live till mid 90s.
That being said when he is in a home I will be left with £154 a month. Anyone know if I can be forced to bring overseas money over? I think I know the answer. Thanks for listening to my life.
That being said when he is in a home I will be left with £154 a month. Anyone know if I can be forced to bring overseas money over? I think I know the answer. Thanks for listening to my life.
@77pauline, I believe savings/money overseas will count in the means test, yes. But that the assumption is that your husband will "own" 50% of it, and you 50%, so half will be set aside (ditto for any property owned by you jointly). You should take advice from someone in the legal profession who knows what they are talking about re: the formal ownership of the home and paying off your son's mortgage on it, because you need to be careful not to do anything that could look like "deprivation of assets". More here: https://www.ageuk.org.uk/informatio...paying-for-a-care-home/deprivation-of-assets/
You need to check this, my understanding is that as his wife you have a right to half his personal pension(s), this should include any retirement annuities and therefore anything purchased with them.
Oh Pauline, I do feel for you, what a rubbish time you are both having. I think the colonoscopy might be able to reschedule and perhaps he could be admitted for the bowel prep? I know that upset him more but it is more manageable for you. I’ve had a few horrible crying days as my husband told me I’m turning into a horrible person, when we so work as hard as we do to keep it all going, that’s just frustrating.
