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MargeS

Registered User
Sep 1, 2019
14
Hi,

I've just joined as my father in law is un-diagnosed, but probably has middle stage dementia of some form. His wife died about 10 days ago, and they had just muddled along with his cognitive impairment and declined any help. We have known that he has memory problems, and anxiety for around 5 years now.

We are now in the process of trying to organise a proper assessment for him, but we have found that no one is really interested in helping us practically until he has a diagnosis. (The GP has made a referral) My husband has to deal with the loss of his mother, and the challenge of a father who although technically is safe at home, loses everything on a daily basis, and has now removed all traces of his wife from the bungalow. I don't know if this is just denial or denial exacerbated by dementia?

I don't even know if this makes sense, I think I'm just rambling to get it out of my head. Anyway, I am so glad to have found this forum, and have already learned quite a lot from other people's experiences. Thank you for creating this forum. x
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,666
Merseyside
Welcome to DTP @MargeS

I’m so sorry to read about your mother in law.
Personally, I would contact social services & demand an urgent assessment.
Do you think respite might be an option?
 

MargeS

Registered User
Sep 1, 2019
14
Welcome to DTP @MargeS

I’m so sorry to read about your mother in law.
Personally, I would contact social services & demand an urgent assessment.
Do you think respite might be an option?
Hi @Cat27 , thank you for your reply. I did try social services, but as he is self funding, and we had already found some carers, there was nothing they could offer to help.

It is a bit frustrating. Respite might be an option, but to be honest we are just concerned that a change of environment would lead to another crisis, as he really struggles when you change his surroundings. He stayed with us in the spring when his wife was initially diagnosed in hospital, and it was really hard for him (and us) - I can only liken it to having a small child, who follows you around and really has no idea what to do, or what is going on around him. Respite may be an option, but we don't want to upset him, and he already thinks we want to sell his house from underneath him (we don't want to do that at all and have never even mentioned it.)

I can't even begin to properly describe how sad it makes me to see him like this. He is the most wonderful, clever, thoughtful, gentle, lovely man, who has achieved so many things during his life, and I just want him to be happy.
 

MargeS

Registered User
Sep 1, 2019
14
Hello @MargeS and welcome to DTP
My sincere condolences on the loss of your mother in law.
I’m glad that you are finding the forum a help I wonder if reading some of the societies fact sheets would also be a help?
I hope now you have found us you will continue to post
Thank you @nellbelles. I have read a few of the factsheets, and they are very very good. I have already learned such a lot. I am sure I shall continue to post, and thank you for taking the time to reply.
 

Michael1939

New member
Sep 3, 2019
1
Hi all
My mum has recently come out of hospital after a nasty water infection. She is in the home she has lived in for 55 years yet doesn’t recognise anything in it. Where are we at dementia wise? And what can we do?
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,671
England
Hi @Michael1939 and welcome to Dementia Talking Point.

It’s very difficult to pinpoint where any one is on their dementia journey. My husband lost our home and me at five years after diagnosis, two years before he went into nursing care. He then spent four years in the nursing home.

Other members have experienced this particular problem much sooner than I did and others who never did experience it.

Dementia seems to be a journey that you travel a day at a time, dealing with each and ever problem as it pops up. Once I was over the shock and upset that my husband had forgotten me and our home of 45 years, I thought he is happy to be with me and content to do things with me whilst waiting for me to come and take him home, then I could accept and be content.

Please keep posting and using all the experience and understanding you will find on here, freely given by people who know exactly how you feel.
 

sufro

New member
Sep 5, 2019
2
Hi I am a newbie on here. My Mother was diagnosed with moderate stage dementia just one year ago. She has recently begun to exhibit more challenging behaviour episodes along with frequent anger/ shouting outbursts. I have read that this could be part of latter stage dementia. She is currently still wanting and trying to live independently but this is becoming increasingly difficult daily. Does anyone have any advice please re the onset of BPSD
 

nae sporran

Volunteer Host
Oct 29, 2014
6,356
Bristol
Welcome to Dementia Talking point @sufro. Sorry to say I have little experience myself, but the forums have a large number of experts who can advise you.
One of the most common causes is a UTI, so if it is very recent and you have not eliminated that possibility then getting a urine sample to your mother's surgery is always worth trying. Otherwise, https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/behaviour-changes may explain some of the possible reasons and advise you.
 

sufro

New member
Sep 5, 2019
2
Thank you... yes! Mum had a bad UTI (her first) less than 3 months ago, and has really deteriorated alot since then. I hadn't pinpointed that as the cause of her behavioural changes.
We do not think it will be long before we have to tackle the dreaded fight of getting her to accept that continuing independent living is neither viable nor safe. My brother is going to speak with mum's GP to discuss where we really go from this point.
 

LongDistance

New member
Sep 6, 2019
4
Hi All - I’m a complete newbie here so apologies if I’m in the wrong thread!
I live overseas and hadn’t seen family for two years. During my recent visit my brother-in-law told me he believes my sister has some form of dementia. I shan’t go into detail but the narrative is convincing and my own observations tend to confirm.
He saw their doctor to ask for help and advice and was told by the doctor that he couldn’t (or wouldn’t) do anything unless my sister sought help herself. My brother-in-law raised the subject with my sister resulting in a two-day distressing ‘meltdown’ from her before she, in his words, “just seems to have forgotten all about it”. So he’s been baulked at the first hurdle. Where does he go from here?
I want to help but I’m 2,000 miles away. Any suggestions gratefully received.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,356
Bristol
Welcome to Dementia Talking Point, LongDistance. Sadly, the problems your brother in law are having with your sister are familiar. Most people with dementia, my partner included, will not or are scared to accept a diagnosis of dementia. Doctors have their patient confidentiality to protect.
Can your BIL take your sister in for a routine check up, after reminding her GP of his concerns, and asking for a bit of discretion. OF course other factors like stress, vitamin B12 deficiency or urine infections can give some of the symptoms, so your sister's GP can eliminate those.
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/worried-about-memory-problems will give you some info on the process and posting your concerns on the forum https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/ might help you find others at the same stage. Just click on "Post new thread" and pose the question as your title.
Best of luck.
 

Witsendtoo

New member
Sep 9, 2019
1
Hi all - I am a new member. My mother in laws as dementia and is doubly incontinent and refuses to wear pads . She has been in a care home in their dementia unit for two and a half years. She had the double incontinence and challenging behaviour (refusing to wear pads) when they took her on. Now under new management they are asking us to pay two and a half thousand pounds for one to one care for two weeks to try to get her used to wearing pads. They say if it doesn’t work they will evict her! They gave us no warning of this - just called us in for a routine meeting on her 94th birthday. Can they do this?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,356
Bristol
Welcome to DTP, @Witsendtoo. That is horrible stressful dsituation for you and for your mother in law. I don't know the answer, but there are many on here who have more experience. Have you tried the national dementia helpline? They should be able to give you more professional advice, though it is free.
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
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,498
Yorkshire
hello @Aliandneil
a warm welcome to DTP
I'm glad you're settling in and having a read around the forums
I think the strength of this community is that we come here feeling worried and isolated and find so many folk who who are walking or have walked the same route, so we can travel along together and support each other
it was a great relief to me, definitely

when you're ready, start your own thread and members will offer sympathy and useful suggestions
 

Chisbo

New member
Sep 13, 2019
4
Hi.
I started to have word memory problems several years ago and 18 months ago I had a examination with a psychiatrist who tested me using ACE-iii and I scored 93. Following this I was told that I had MCI. 12 months later I was retested and the score went down to 84. I was then retested 6 months later (June 2019) and my score is now 80. I have now been referred to a Neuropsychologist.
Does this now indicate that I now have Dementia rather than MCI.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,356
Bristol
Welcome to Dementia Talking Point @Chisbo. You are going through a worrying time with your memory problems and will find support and advice here from other in similar situations. My own experience is with vascular dementia, but in case it is any help to you
https://www.alzheimers.org.uk/about-dementia/types-dementia/mild-cognitive-impairment-mci suggests a falling score is often caused by an underlying illness.
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/diagnosis is a useful factsheet with links to the process of diagnosis.
In your position I would go back to your GP and tell him of your concerns.
 
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