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Welcome to Talking Point - introduce yourself here

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Sturdygirl

New member
Aug 2, 2018
7
Hi just joined today after months of reading posts , mum has dementia, and it's getting tough to see her changing . It's been so informative reading similar experiences to my own . I've been amazed to read the love and support of others sharing the same heartbreak. Thank you for accepting my request to join .
 

nae sporran

Volunteer Host
Oct 29, 2014
6,563
Bristol
Welcome to TP, @Sturdygirl. It's good to see you are already getting some support an comfort from reading, but you feel ready to ask for advice of just share your own experiences we will be pleased to hear from you.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,054
68
Dundee
Hi @Sturdygirl and welcome to the forum.

I'm glad you found us and I'm sure you will find a lot of help and support here. Now that you've had a look around you might want to consider starting a thread of your own. A lot of members do this so that they can keep all of their own thoughts and responses from others in the same place.

If you want to do that just go to the I care for a person with dementia area. At the top, you'll see a button called 'Post New Thread'. Click or tap on that and you're all set to begin.

I look forward to seeing you around the forum.
 

karaokePete

Registered User
Jul 23, 2017
5,271
N Ireland

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hi,
Would welcome advice my mother has Alzheimers for 2 years now. Never accepted help all her life. This has got much worse does not think there is anything wrong with her and thinks she can do everything herself. This is far from the case
What sorts of things do you think she needs help with? Is she going to any sort of day care or support groups? Or do you mean help to run her home? Does she live alone?
 

Rosie99

New member
Aug 4, 2018
1
Hello I have joined because I have valued and been helped by reading about the experiences of others caring for someone they love who has dementia. My mum was diagnosed 6 months ago and, like many others, does not accept her diagnosis. Together with my Dad, I am trying hard to provide the support she needs and, generally, we manage well but sometimes I get it wrong and respond to her as if she is Mum before dementia. It is difficult to always behave differently to reflect Mum’s new reality. I am hoping that these forums will help reassure that we are not alone in feeling this way which will give us the boost we sometimes need to really help my Mum.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,054
68
Dundee
Good morning and welcome to the forum @Rosie99. I'm sorry to read about your mum's diagnosis but I'm glad you have been finding the forum useful.

Now that you have introduced yourself you might want to think about starting a thread of your own. Just go to the I Care For A Person With Dementia area and click on the post new thread option.

https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

In the meantime you might find this link useful -

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello I have joined because I have valued and been helped by reading about the experiences of others caring for someone they love who has dementia. My mum was diagnosed 6 months ago and, like many others, does not accept her diagnosis. Together with my Dad, I am trying hard to provide the support she needs and, generally, we manage well but sometimes I get it wrong and respond to her as if she is Mum before dementia. It is difficult to always behave differently to reflect Mum’s new reality. I am hoping that these forums will help reassure that we are not alone in feeling this way which will give us the boost we sometimes need to really help my Mum.
Hello, Rosie, welcome from me too. It does us all good to read other posts, I certainly need reminding on a regular basis. Just yesterday I made a comment to my husband, that led to a lengthy explanation. For a moment, I had forgotten the dementia and spoken to him just as I always used to.
 

Tub54

New member
Aug 4, 2018
1
Hello, my mother has dementia and father had had to put hey into a home. We feel awful.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,768
Yorkshire
hello @Tub54
a warm welcome to TP
it's not an easy decision to make to move a wife into a care home, no wonder your dad and you feel awful but no doubt it has been done because it was best for your mum
in time you will work out a routine of visiting and get to know the staff to build your confidence in their care for your mum
it's good that you have found TP and can share your experience with folk who understand
start your own thread when you're ready, with anything that's on your mind, and members will reply with sympathy and suggestions
best wishes to you and to your dad
 

karaokePete

Registered User
Jul 23, 2017
5,271
N Ireland
Hello @Tub54, welcome to TP. I hope you find the forum to be a friendly and supportive place.

It is common to feel this way when this decision has been made. However, it has to be remembered that the decision is usually made when the level of care required can only be provided in a Care Home and, at least, you know that your mother should now receive the care that can only be provided by a team of professionals. If it's of any help I can say that there are many tales of people settling down and doing well in such an environment. There is an AS Factsheet about this issue and page 13 onwards deals with your situation. Here's a link to it if you think it would help to have a read https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_selecting_a_care_home.pdf
 

Chrissie1956

New member
Aug 8, 2018
1
Hi, I just joined as I feel alone with being a carer. I have been caring for my 89 year old Mum for about 6 years. She has arthritis and had a hip operation 2 years ago. She was then diagnosed with dementia. It is slowly getting worse and I have to admit I am struggling to cope with with it. She also has heart and kidney problems now. She has a carer in twice a day and I also go in every day. I know i shouldn't feel the way I do but some days I could scream. I sometimes feel like I can do nothing right for her. Need some advice on how to cope with dementia please.
 

canary

Registered User
Feb 25, 2014
11,630
South coast
Hello @Chrissie1956 and welcome to Talking Point.
Leaning how to cope with dementia is a steep learning curve and I am still learning. Have a mooch around the site - there is lots of excellent advice to be found. If you want to know about anything specific do start a new thread to ask.Talking Point is also an excellent place to let it all out and have a rant.
xx
 

karaokePete

Registered User
Jul 23, 2017
5,271
N Ireland
Hello @Chrissie1956, welcome to TP from me too.

It may be worth while checking for carers groups in your area and you can do a postcode check for support services by following this link https://www.alzheimers.org.uk/find-support-near-you

If you are having communication difficulties with your Mum you may find the Compassionate Communication thread worth a read and you can find that by way of this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

Otherwise, do have a good look around the site as there is a lot of information and support to be found here. A good place for information is the Publications List, which you can find by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
 

LuvMum

New member
Aug 6, 2018
4
Thank you for the kind welcome
I am a new member and came across this website after searching for information on dementia. I believe that my mother is suffering from the initial stages after reading the threads posted here and I have also read that I should stay calm and wait for the diagnosis.
My mum is 75 and has shown distinct changes in behaviour this year. She has always been a difficult person, very stubborn and set in her ways. My dad passed away 23 years ago, so mum has lived alone for a long time. Mum is also of Asian origin, the only female of 8 siblings who did not have a proper education. She hardly reads or write English. So, you can imagine the circumstances when my dad passed away. Mum was highly dependent on him. To top that, my sister and I live abroad and my brother in London but he has been alienated by my mother. This may be alot of info all at once, but I really don’t know where to start.
Returning to the present, mum despises my brother and his partner greatly. She blames them of stealing, sharing her house keys with ‘everyone’, sleeping in her garage. She thinks she is being followed and often will not leave the house because there are too many people out there waiting for her. She locks the doors and windows with special mechanisms and can’t understand how ‘they can still get in’. She looks for evidence of theft in the house on a daily basis.
At first we thought it was true, it was awful. We flew over to see for ourselves after hearing stories on the phone that were very concerning. We soon realised that mum is really not well. A few weeks ago we managed to have a case worker over to assess mum. He has written a report but we don’t know what’s in it. I was present during the assessment. Questions were mainly related to mum’s life story, some time was dedicated to her daily life. The case worker mentioned a referral for a scan or MRI. He said he doesn’t think she has dementia. It was more related to thinking and perspective. My sister and I have written about our concerns to the case worker but he works two days per week and is probably buried in work. We have had no feedback since. Yet every day we hear stories from mum on the phone, she often cries, and we feel that the longer she is left alone, the faster she will deteriorate. She is also alone in a 3 bed semi which she wants to sell to downsize. Mum has recently done her will, she keeps saying she knows something is going to happen to her. She is able to make it to the solicitor and back as long as there is nobody outside waiting for her, but then she thinks she is followed on the bus. I noticed the people she points at are random people passing by, living in the area going to work, including the postman. She sees the ambulance often and thinks they park opposite her house and watch her. She thinks the driver is my brother’s partner’s dad. My brother recently had an accident at work and mum said he hurt himself trying to climb her roof to get into her house. He then exited her garage with his partner limping where he was picked up by the same ambulance. After speaking to my neighbour, I discovered that the ambulance was there one night but to pick up somebody living on the opposite side of the road. Mum made her own connections. Mum now thinks that people are using her garage, that they’ve dug a hole in the floor and have buried a body or stolen goods. She can’t sleep due to worry.
Our phone calls get worse and whilst we’re waiting for the diagnosis it is difficult to know how to support mum from afar. Since mum managed to alienate me too due to her behaviour in the past (which now we think could be due to something medically related), it is also a strain on my marriage. It is only recent that she has agreed to see me after about 6 years of silence. I visited her because I do love her, despite everything. But my husband has a different view.
How long does it take to be diagnosed? What sort of accommodation should we think of now? Mum refuses medication, she insists she perfectly well. The GP confirmed it and the case worker said she’s a lovely, sociable person. Nobody has yet diagnosed AZ or dementia. Mum says if she knew she was ill, she would take medication, but she’s fine, so why should she......
Sorry for the long text, I (we) are very confused and worried about how to proceed for mum’s well-being and peace of mind.
Does anybody know of a blood test called urinknees, or something similar. My sister heard this from the GP on the phone but maybe it is misspelt?
Thank you to all for listening.
 

karaokePete

Registered User
Jul 23, 2017
5,271
N Ireland
Hello @LuvMum, you are welcome here and I hope you find the forum a supportive place.

I haven’t heard of the blood test you mention but do know that diagnosis can take a long time and that blood tests are part of the process. Bloods are taken to check for some conditions that can mimic dementia but are treatable so they have to be eliminated.

There is an AS Factsheet about diagnosis and you can read it if you follow this link https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_assessment_and_diagnosis.pdf

There is a useful thread about communication that you may find helpful when talking to your mother and you can read it by following this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

Sujanne

Registered User
Aug 10, 2018
10
Hi, I have joined today because I am at my wits end. My dad is in a nursing home with dementia. He was admitted to hospital after an episode. He has been in care homes and now a nursing home. At the time my mum had been caring for him with our help but then she couldn't cope anymore. She herself was diagnosed with terminal cancer and she passed away in June. Dad qualified for full CHC, then suddenly that stopped. Mum wanted dad back home. We want our dad back home, the only reason dad was put into a home was mum couldn't cope. We feel we owe it to dad. We want to care for him, there are now four of us able to do this. Where do I go to for advice. There is a DOLs in place. What can we do.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,563
Bristol
Hi, I have joined today because I am at my wits end. My dad is in a nursing home with dementia. He was admitted to hospital after an episode. He has been in care homes and now a nursing home. At the time my mum had been caring for him with our help but then she couldn't cope anymore. She herself was diagnosed with terminal cancer and she passed away in June. Dad qualified for full CHC, then suddenly that stopped. Mum wanted dad back home. We want our dad back home, the only reason dad was put into a home was mum couldn't cope. We feel we owe it to dad. We want to care for him, there are now four of us able to do this. Where do I go to for advice. There is a DOLs in place. What can we do.
Welcome to TP, Sujanne. I'm sorry for the loss of your mum.
Regarding the CHC funding and taking your dad back home, that's not something I have experience of, though the beauty of Talking Point is that there is always someone around who has. Have you tried the National Dementia Helpline for expert advice ?
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

This link may help you with CHC in the meantime.
https://www.alzheimers.org.uk/search?keywords=CHC&Search=

I hope any of that helps.
 
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