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Kevinl

Registered User
Aug 24, 2013
7,379
0
Salford
And I take my hat off to you too, it isn't easy but we're all here to listen and offer advice where we can. First 10 years are the worst, after that you just get used to it. K
 

JHB

Registered User
May 4, 2024
10
0
Hello. My husband has Alzheimers, Prostate cancer, urinary retention ( necessitating an indwelling catheter and a drainage bag at night time ) and digestive issues. All of which started 4 years ago. So life has been a bit of a roller coaster but I have been managing up until the last few weeks. I have wonderful support from family but I don't like telling them everything that is happening as they too have lives to live and i know they worry about me as much as their father. Trying to navigate the Alzheimers and manage the other conditions I look for the funny moments and usually find them even if not at the time.

The last few weeks my husband has not been sleeping at night - waking up after 2 - 3 hours sleep which of course is disturbing me too and I am not managing so well. I find him polishing shoes or trying to find 'something' or removing mud from his wellies. He has also taken to removing the night time drainage bag and as he can't work out how to remove it he cuts if off. I had a brainwave about that which was to hide the scissors. - mistake! he went looking for a sharp object and found a multi-tool penknife. I decided scissors were safer. I have tried sleep patches. No joy. I tried Nytol. No joy. GP has referred me to incontinent clinic (?) - not yet heard from them.

However, last night or to be more accurate at 03:40 I found him having cut off the catheter itself so had to call 111 and get help. Not knowing if this would require hospital to remove the remaining bit of catheter still in him, wet bed, clothes and carpet. This pushed me over the edge a bit and I couldn't stop crying for several hours. The nurse from 111 said she had visited several male patients with Alzheimers all with the same issue! Someone must have an answer as to how to prevent this. I found myself wondering if this is connected to the moon! After the nurse came he slept until 11 and has, infuriatingly, absolutely no recollection of the nights activities. I have had a snooze, calmed down and stopped crying and now trying to think of ways to manage and prevent him from removing / cutting the catheter.

That's a long hello and a big dump of stuff. Sorry. Any ideas would be most welcome
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,698
0
Kent
Welcome to the forum @JHB I do hope you’ll get more support than I can offer as far as managing a catheter.

What resonated with me was your comment about wondering if this behaviour had a connection to phases of the moon.

My husband was a cancer birthday and he was affected by the moon as long as I knew him which was 54 years.

If being affected by the moon causes this level of confusion I’ve no idea how it can be managed or indeed if anyone will believe you.

I hope you will find other members more knowledgeable and helpful.
 

JHB

Registered User
May 4, 2024
10
0
Welcome to the forum @JHB I do hope you’ll get more support than I can offer as far as managing a catheter.

What resonated with me was your comment about wondering if this behaviour had a connection to phases of the moon.

My husband was a cancer birthday and he was affected by the moon as long as I knew him which was 54 years.

If being affected by the moon causes this level of confusion I’ve no idea how it can be managed or indeed if anyone will believe you.

I hope you will find other members more knowledgeable and helpful.
Thank you. Any advice or suggestions will be most welcome
 

Kevinl

Registered User
Aug 24, 2013
7,379
0
Salford
Well hello and welcome for me too JHB from me too.
You think a man's catheter is a difficult thing to deal with, try it as a man when it's your wife and your mum, been there done that got the
P-shirt like a T-shirt but best use a boil wash whatever the washing instructions say. K
 

JHB

Registered User
May 4, 2024
10
0
Well hello and welcome for me too JHB from me too.
You think a man's catheter is a difficult thing to deal with, try it as a man when it's your wife and your mum, been there done that got the
P-shirt like a T-shirt but best use a boil wash whatever the washing instructions say. K and

Thank you for the laundry advice. I don't find dealing with the catheter difficult nor the soggy outcomes. What is difficult is him cutting the catheter off with a pair of scissors near delicate parts of his anatomy and last night actually removing the entire catheter. Fortunately the balloon had virtually deflated. I'm just hoping for ideas on how to prevent him tampering with the whole system .
 

Fazbang

New member
May 7, 2024
3
0
Hello My mum has had Alzheimers now for 10years at least, the past 2 she has been completly bedbound.
 

Kevinl

Registered User
Aug 24, 2013
7,379
0
Salford
Thank you for the laundry advice. I don't find dealing with the catheter difficult nor the soggy outcomes. What is difficult is him cutting the catheter off with a pair of scissors near delicate parts of his anatomy and last night actually removing the entire catheter. Fortunately the balloon had virtually deflated. I'm just hoping for ideas on how to prevent him tampering with the whole system .
Hide the scissors and buy him some boxing gloves, try using a pair of scissors with those on, isn't easy. Please appreciate I say this lightheartedly let's see what others suggest. K
 

really78

Registered User
Jan 7, 2023
11
0
Hi all - new person on here, currently struggling with a Mum who has undiagnosed dementia and will not go to the Doctors about it. I live about 20 minutes drive away and pop over a few times a week to get her shopping and check on paperwork. Issues are that she will not accept any other help at all, despite her mobility now being bad, and being vulnerable because of her memory issues.

Thankfully she can still look after herself, but since my father died a few years ago, her narcissism is out of control, and it is all about her and her issues, without any thought for family or friend's feelings. She is also living with breast cancer, and is on a cocktail of pills, which she forgets to take, and gets very annoyed about if you try to help her with them. Her surgery have now issued dosset boxes, and I just pop the next week's box in the kitchen for her to take when I am up there. Thankfully she isn't violent but she can be very snappy and hurtful to those trying to help her.

I think the worst thing for me is that I don't get a lot of help from family or friends, some firmly don't want to get involved, but are quite happy to visit and chat, which at least gives her some company (as I work full time). My brother is not good, (we don't talk very well as it is), and she has just one good friend left now who understands, but doesn't get too involved.

It has been very helpful to me to realise I am not alone, as it is hard to process your parent turning into a hateful, spiteful and contradictory person. My mum has always had traits of this in her (being a teenager around her was hell...) but we had repaired our relationship well until she started showing signs, now it is like being 13 again. It upsets me a lot, as it brings up things from my teenage years I thought I had resolved, but I also realise lots of people on here are living with a lot worse! I take my hat off to you all for your bravery and stoicism in the face of this awful disease.
I feel for you l have been doing it for 13 never got used to it my relative, had narcissistic traits way before dementia & had alcoholism. I also done so much inner work to resolve my issues, with his violence before dementia . But being the main carer ,and my attempts at arranging care have been traumatic , which is an understatement.

Thankfully l managed to go from living with him , to commuting to do the care. The one time he asked for advice was when he was diagnosed with cancer & he actually took my advice he's still here to tell the story. I'm sure you are doing the best you can , as we make what feels like an impossible situation bearable.I too have a complicated/ not really existing relationship with my brother. And the other "relative" is known for barking orders , but not wanting to get her hands dirty sigh glad you found this group , but also bet we all wish we didn't have to be in it .
 

really78

Registered User
Jan 7, 2023
11
0
I'm new been struggling with caring for a relative with dementia for 13 years .l'm mostly exhausted all the time , but appreciate reading other people stories
 

Kevinl

Registered User
Aug 24, 2013
7,379
0
Salford
Hello My mum has had Alzheimers now for 10years at least, the past 2 she has been completly bedbound.
Hello and welcome first of all from me and the rest of us I'm sure. Post whenever your ready, all here to help if and when we can. K
 

JohnNYC

New member
May 8, 2024
1
0
Hello,

I've just joined the site. My mom has Alzheimer's and recently moved into assisted living. Speak with her every day and visit 2-3 times a week. Having a lot of guilt for placing her in AL, even though the facility is very nice with great staff.

John
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,785
0
Newcastle
Hi @JohnNYC and welcome to Dementia Support Forum our friendly and helpful community of members who have experience of many aspects of dementia. You'll find a great deal of understanding and support here. So far as service provision and facilities go, the site has a UK orientation. But dementia recognises no borders so I am sure that you'll find plenty of useful information here.
 

Michael_1948

New member
May 8, 2024
2
0
Hello, my daughter recommended this forum, as a way of getting support from others. I am carer for my wife, whose memory is declining very quickly, while she becomes quite confused at times. She can get herself up, but this takes much of the morning, and then it's a case of staying in the chair for most of the rest of the day. I don't like to be away too long, just in case things go wrong.
I'm sure I'm far from alone in this position. It is hard to see someone who used to be a teacher, and whose memory was excellent, getting so mixed up, and asking the same thing over and over. The trouble is we all get older, rapidly it seems, and things get increasingly difficult. My own health issues just make it all more tiring these days.
Thanks for letting me join this forum.
Michael
 

SAP

Registered User
Feb 18, 2017
1,679
0
Hello @Michael_1948 , I’m glad you took your daughter’s advice. Please feel free to ask any question, read through other posts or just vent if you need to.
It might be worth looking to see if you have a Carers Centre near you where you can get local advice and meet other carers.
 

Gosling

Volunteer Host
Aug 2, 2022
2,165
0
South West UK
Hello Michael @Michael_1948 and welcome from me also to this friendly and supportive forum. There is a wealth of shared experience of dementia to be found here so I am glad you have found us.
I'm also pleased to hear your daughter recommended this forum.
I'm sorry to read about your wife's confusion and memory loss. Do you actually have a diagnosis I wonder?
Anyway, do have a good look around the forums and ask any particular questions you may like to. Use the forum too as a place to let off a bit of steam when you need to. People here understand.
 

Michael_1948

New member
May 8, 2024
2
0
Hello Michael @Michael_1948 and welcome from me also to this friendly and supportive forum. There is a wealth of shared experience of dementia to be found here so I am glad you have found us.
I'm also pleased to hear your daughter recommended this forum.
I'm sorry to read about your wife's confusion and memory loss. Do you actually have a diagnosis I wonder?
Anyway, do have a good look around the forums and ask any particular questions you may like to. Use the forum too as a place to let off a bit of steam when you need to. People here understand.
Thank you. My wife was referred to the Adult Mental Health team, and we took her twice to see the doctor in charge, for memory tests. There was loss of cognitive ability, and memory issues. The second one was very slightly improved, and he referred her back to the GP, where all contact stopped. She managed the memory test better, maybe because she knew what was happening, but things are gradually worsening.
It is good that our daughter, who has experience in working in a care home for residents with various personality disorders. Also, our granddaughter is training as a mental health nurse, and is a good support when she is at home.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,986
0
Hi all - new person on here, currently struggling with a Mum who has undiagnosed dementia and will not go to the Doctors about it. I live about 20 minutes drive away and pop over a few times a week to get her shopping and check on paperwork. Issues are that she will not accept any other help at all, despite her mobility now being bad, and being vulnerable because of her memory issues.

Thankfully she can still look after herself, but since my father died a few years ago, her narcissism is out of control, and it is all about her and her issues, without any thought for family or friend's feelings. She is also living with breast cancer, and is on a cocktail of pills, which she forgets to take, and gets very annoyed about if you try to help her with them. Her surgery have now issued dosset boxes, and I just pop the next week's box in the kitchen for her to take when I am up there. Thankfully she isn't violent but she can be very snappy and hurtful to those trying to help her.

I think the worst thing for me is that I don't get a lot of help from family or friends, some firmly don't want to get involved, but are quite happy to visit and chat, which at least gives her some company (as I work full time). My brother is not good, (we don't talk very well as it is), and she has just one good friend left now who understands, but doesn't get too involved.

It has been very helpful to me to realise I am not alone, as it is hard to process your parent turning into a hateful, spiteful and contradictory person. My mum has always had traits of this in her (being a teenager around her was hell...) but we had repaired our relationship well until she started showing signs, now it is like being 13 again. It upsets me a lot, as it brings up things from my teenage years I thought I had resolved, but I also realise lots of people on here are living with a lot worse! I take my hat off to you all for your bravery and stoicism in the face of this awful disease.
Hello @Neutronflower and welcome to the Dementia Support Forum. You have been going through a lot recently especially if you do not get much help from family and friends. When you are ready you might find it useful to start a thread on the 'I care for a person with dementia' area. There you can ask questions, talk about how you feel or just have a rant when needed.
 

Chizz

Registered User
Jan 10, 2023
4,321
0
Kent
Hello My mum has had Alzheimers now for 10years at least, the past 2 she has been completly bedbound.
Hi @Fazvbang - welcome to this forum from me too. I feel for you and know where you're at. My OH has been bedbound since July 2022, so coming up for 2 years.
Best wishes
 

Ravenbrand

New member
May 10, 2024
6
0
Just joined to try and get some help and a better understanding. Both mum and dad (87 and 89) have Alzheimers and were tested before the pandemic and diagnosed during and after a great deal of hassling, cajoling and sad to say complaining. My sister and I are their carers but matters have worsened to the degree where we now have 24 hour live-in care.
 
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