Welcome to Talking Point - introduce yourself here

[Mudgee Joy]

Hi I am a new member and would like to introduce myself properly. I live in a small country town and my husband has been diagnosed with dementia but not a specific type - I suspect it’s Vascular D after reading the information on your site- he got sick very quickly after flue, pneumonia and heart attack and at first I thought he would just settle and get back to normal ‍♂️- he is heaps better now that 6 months ago as much delirium has settled- I am afraid if he gets sick again he will get poorly again. He has lost energy , sleeps a lot and suffers from the nighttime problem of wanting “to go home” when he is home. The best method so far it to reassure him we will go in the morning - but it’s horrible!!

Hearing about others helps - the best thing I did was buy my husband a pet whippet 18 months ago- he adores her and she is always ready to share a nap. MJoy

 

[Mudgee Joy]

Hi Daisy
I am in a similar situation and cried a great deal in the past 6 months but looking back can see things had been different the past 18 months- you loose the person you want to share everything with - there are still some nice moments and I am getting much more patient - he gets news on tv and news at home totally entwined and can’t see its not rational - I read A book called Contented Dementia and now try not to disagree with him No matter how crazy - I often have to show him how to find the bathroom - or where the tea is kept !! Very sad and time consuming - but mostly peaceful. All the best,
MJoy

post: 1480209, member: 65592"]My husband was diagnosed with early Alzheimers in February 2017. I had noticed that he wasn't quite his normal self for about 2 years but over this last year he seems to have got noticeably worse. What I find difficult is that I still see him as he used to be and find it difficult to deal with situations when he doesn't understand what I am talking to him about. I know that I must be more patient with him but I am feeling very stressed with everything that happens. Do you think this is a normal reaction from me as if I have got annoyed with him I always feel bad afterwards ?[/QUOTE]
Hi Daisy

 

[JenB]

Hi, I have just signed up to talking point. After nearly a decade of seeking out a diagnosis for my mum's deteriorating symptoms, with suggestions ranging from depression, psychotic depression and cotard's syndrome, earlier this year my mum was diagnosed with early onset dementia. Due to the number of varying diagnosis given, it has made it very confusing and hard for my Dad to accept this final diagnosis. This has manifested as him continuing to insist on additional tests and new assessments and giving me uncertainty too. That was until today when I was able to visit the local psychiatric unit with him and hear directly from the doctor. This afternoon was the first time i have realised that the doctors are absolutely clear of their diagnosis and that my Dad now needs support to be able to accept the diagnosis so that we are able to start putting into place a structure of support for my mum and crucially for him. As i'm sure you can imagine, it has been an upsetting day and if anyone has any advice of how I can help my Dad find acceptance in what he is being told and support so he does not have to shoulder the burden of my mum's disease that would be greatly appreciated.

 

[4of7]

Hullo @4of7, welcome to TP.
It's good that you have support from family and social care, that's half the battle. On the question of your Mother in Law wandering, have you tried a warning system. We had one in our last house where you could record a message to tell her to turn back as she goes by.

Hi thanks for the suggestion - i havent heard of those before - where did you get the warning system from?

 

[nae sporran]

Hi thanks for the suggestion - i havent heard of those before - where did you get the warning system from?

The Social Worker gave it to us. Sorry, don't know where she got it from. It was a small speaker about the size of a beer can with a microphone to record your message and a bracket to screw it to the wall.

Can't find the same one on the internet, but http://www.livingmadeeasy.org.uk/telecare and alarms/walking-alarms-_-exit-from-property-1376-p/ has a few similar detector alarms. This one is closer to it, but seems to work with a pager https://www.alzproducts.co.uk/motion-sensor-for-wireless-wander-alarm.

 

[Shedrech]

hello @JenB
welcome to TP
hearing a diagnosis is pretty tough, it may take your dad some time to begin to grasp what is happening with his wife, so time will help - I'm assuming you don't need to get a care package in place immediately, so have time for your dad to find his feet
maybe have a look at this booklet
What is young-onset dementia? (440)
and there's this website
https://www.youngdementiauk.org/
you could begin to look at the legal side of things especially Powers of Attorney (I'd suggest for both of them)
https://www.gov.uk/government/publi...ing-power-of-attorney-a-guide-web-version#A10
https://www.gov.uk/government/collections/lasting-power-of-attorney-forms
and suggest they check they have up to date wills
also at some point apply for Attendance Allowance, which is not means tested - having a read of the forms will give you an idea of when it's time to apply (not an easy read possibly)
https://www.gov.uk/attendance-allowance/how-to-claim
when your mum receives AA she can also apply for a disregard of Council Tax
your dad may qualify for carer's allowance, depending on his circumstances
https://www.gov.uk/carers-allowance

when you're ready, do start your own thread to chat and share your experiences
and your dad may consider joining too as there are other men here looking after their wife

 

[Nurse Snafu]

Hello everyone, just wanted to say thank you to TP for this amazing resource and to all of you for sharing the ups and downs of dementia.
I'm still at the early stage of trying to get Dad to the GP for a diagnosis (been trying for over a year) whilst supporting Mum as she cares for an increasingly frail and forgetful husband who can no longer initiate a conversation and makes a cacophony of downright creepy noises through the night.
They are both retired social workers and Dad was also a nurse - I have no doubt that they will both continue to refuse to seek help or diagnosis until a crisis occurs. Mum is exhausted but thinks asking for help is being disloyal. Any advice most welcome. I'm an only child (in my late 40s) and have recently moved from the other side of the country to be nearer them to which their response was that I shouldn't have moved and they are perfectly fine, thank you very much. I feel guilty about even posting on here but feel I am among friends and at the moment can barely get through a days work without crying as am finding it heartbreaking losing my Dad. Thanks everyone.

 

[JenB]

hello @JenB
welcome to TP

Thank you @Shedrech for the welcome, links and advice, just having a place to go and to understand other people's experience of dementia is already a great comfort. I am keen to support my Dad in a gentle and productive way to help him come to terms with the diagnosis, so i'll be sure to continue to read the threads or perhaps start my own if a relevant one doesn't already exist. I would definitely value learning from how other's have found a way to accept and come to terms which such devastating news. Dad is very much in the place where he doesn't want to give out hope that there might be a way to slow or stop the illness and has started looking at clinical trials. I am hopeful to connect with people who have gone through a similar range of emotions and response to a diagnosis - those who have continued to search for solutions to what seems to be an illness that presently only permits acceptance and support rather than offering any kind of reversible resolution. The latter, plus the fact that the disease seems very isolating because the person who has dementia is unable to comprehend what they are experiencing, seems to be the reason as to why it is so upsetting for all parties involved.

 

[Mark61]

Hello
My mum has vascular dementia(I think)I gave up work a couple of years ago to look after her and my dad who is housebound though hadn't dementia.Today she went for a sleep and when she got up was confused and wanted to go home although she is in her house which she has lived in for 30 years.Her home she thinks off is her childhood home.She has calmed down now but what's the best way to deal with this situation?
Thanks Mark

 

[nae sporran]

Hullo @Mark61 and welcome to TP. I'm not sure what to offer beyond distraction and reassurance. My OH went through a bad period in the summer of wondering where her mum is though she died 25 years ago. She did go through a period of talking about home, though I was never sure if she meant she home where she raised her children or where she grew up.
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ may give you some tips on dealing with confused conversations.

 

[Shedrech]

hello @Nurse Snafu
a warm welcome to TP
the time trying to get a diagnosis for someone can be very trying indeed - and it's not at all u usual for the person and carer to be caught up in the situation so much they can't see the wood for the trees
there's nothing stopping you contacting your dad's GP yourself and giving them a set of notes outlining all the tasks your dad can no longer do and all your concerns - the GP may not discuss the situation with you but has to note any info you provide - might you ask the GP to call your dad in for a general age related check up, or for a flu jab
might your mum respond to a bit of scare tactics ie it's best to get support now on her terms rather than wait until she is so exhausted she is ill, cannot take care of her husband and decisions are taken out of her hands - or emotional blackmail ie I am so worried about dad, why not go to the GP to prove there is nothing wrong and I can stop worrying you and nagging, or tell her even if there issomething amiss, it may be just a vitamin B12 deficiency which is quite common and easily treatable so it's daft not to get it sorted out .... and there is a drug which helps delay symptoms if it is Alzheimer's so it's silly to deprive your dad of this
to be honest, from your description, it does sound as though your dad is not merely in early stage and that your mum bzdly needs support so you can yourself contact their Local Authority Adult Services and ask for an assessment of your dad's care needs because you are so concerned that they are making themselves vulnerable by not seeking help
do also mention that there is finance available to help, Attendance Allowance, and a reduction in Council Tax; after paying into the system all their lives they are entitled to this money and the benefit isn't means tested - also make sure your mum knows that the marital home is safe, she may worry that it will have to be sold for care fees but this is definitely not the case
you are very much among friends here, maybe your mum needs to realise too that she is not alone in this, members support each other and it makes such a diffdrence -so keep posting

 

[Theresalwaystomorrow]

hello @Nurse Snafu
a warm welcome to TP
the time trying to get a diagnosis for someone can be very trying indeed - and it's not at all u usual for the person and carer to be caught up in the situation so much they can't see the wood for the trees
there's nothing stopping you contacting your dad's GP yourself and giving them a set of notes outlining all the tasks your dad can no longer do and all your concerns - the GP may not discuss the situation with you but has to note any info you provide - might you ask the GP to call your dad in for a general age related check up, or for a flu jab
might your mum respond to a bit of scare tactics ie it's best to get support now on her terms rather than wait until she is so exhausted she is ill, cannot take care of her husband and decisions are taken out of her hands - or emotional blackmail ie I am so worried about dad, why not go to the GP to prove there is nothing wrong and I can stop worrying you and nagging, or tell her even if there issomething amiss, it may be just a vitamin B12 deficiency which is quite common and easily treatable so it's daft not to get it sorted out .... and there is a drug which helps delay symptoms if it is Alzheimer's so it's silly to deprive your dad of this
to be honest, from your description, it does sound as though your dad is not merely in early stage and that your mum bzdly needs support so you can yourself contact their Local Authority Adult Services and ask for an assessment of your dad's care needs because you are so concerned that they are making themselves vulnerable by not seeking help
do also mention that there is finance available to help, Attendance Allowance, and a reduction in Council Tax; after paying into the system all their lives they are entitled to this money and the benefit isn't means tested - also make sure your mum knows that the marital home is safe, she may worry that it will have to be sold for care fees but this is definitely not the case
you are very much among friends here, maybe your mum needs to realise too that she is not alone in this, members support each other and it makes such a diffdrence -so keep posting

Hi
Could you possibly help me with this forum , sometimes I post then I cannot see it again ? Does that happen when I reply to member ?
Thanks

 

[Mudgee Joy]

Hi
Could you possibly help me with this forum , sometimes I post then I cannot see it again ? Does that happen when I reply to member ?
Thanks

I have the sane question

 

[Grannie G]

Hello @Theresalwaystomorrow and @Mudgee Joy

If you click on your symbol, at the top of the page , on the right, next to the envelope symbol, you will see your Profile. If you click on Your Content, it will show all your posts .

Have a look at this help video

https://forum.alzheimers.org.uk/help/helpvideos/#read

 

[Tilly cat]

Hi everyone I have just joined and already have learned so much from everyone. Both my parents are affected although my Dad refused diagnosis and died on Boxing Day from heart problems. He was 98, in terrible discomfort, so I am relieved he is no longer suffering. My Mum has Alzheimer’s and is still at home with carers going in three times a day. Our current challenge is that she can’t remember he has died and is spending the time worrying about him. I thought she had coped really well on the day she found out and we went to see him in the chapel of rest but then at the end of the evening asked me when he was coming home. Heartbreaking.

From what I have read here it seems it is kinder to reassure, to say ‘I’m sure he is ok’ and to distract and suggest a cup of tea as the grief reaction is intense but then forgotten, and we start again. I’d be interested in how others manage this. My gut feeling is to avoid creating distress.

The next challenge is finding respite care and a home as the GP and district nurse feel she isn’t safe anymore and needs supervision. She doesn’t cook or look after herself anymore. Her three children agree with that assessment. She has always said she doesn’t want to live with any of us. I’d be grateful for any advice on best strategies for moving someone who doesn’t want to leave home, thinks she is fine and is likely to be distressed when she gets there. We have already tried having her to stay at my sisters house and she became distressed and angry ( not violent) saying my sister was holding her against her will and starving her. She was also up at night moving around. She hated being away from home and my sister could not cope with the behaviour. I’d be grateful for any thoughts on the kindest ways of moving her. Thank you to this wonderful community.

 

[Mudgee Joy]

Hi Tilly
I can’t advise you on the “moving on” - but others will. My husband with VD often , when we are at home in the evenings, wants to “go home” - I sometimes try to tell him he is home - but if that’s distressing I tell him we will go home tomorrow.
I suspect for people who live alone - moving into a new place where the staff really know how to talk to them and comfort them, might settle them after a while - probably respite care to start with to see how it “fits” your mum.
Wishing your All the very best !!

 

[Shedrech]

@Theresalwaystomorrow and @Mudgee Joy
Grannie G has directed to a useful video
I'm not sure what the problem is but
I'm wondering whether after posting you then use the 'back' button of your laptop to go back to the forum - it then appears that you haven't posted - instead go to the blue 'Forums' at the top of the page, click on the arrow to get the drop down menu, and click on 'Recent Posts'
I'm assuming that when you do as Grannie G suggests all your posts are shown on your profile and none have really disappeared
I tend not to use the 'Reply to member' button as what I type in can end up within the quotation of the member's post, so it looks as though I've simply quoted with no actual reply - I go to the bottom of the thread and type in the box just above the blue 'Post Reply' button - to let the member know I'm posting to reply to them, I type @ before their username and wait until the dropdown box of username suggestions appears then choose the name I want - as I did for this response
don't know if that helps

 

[Shedrech]

hello @Tilly cat
welcome to TP
your family are facing a tough time - my condolences on the death of your dad
I do agree with you that for your mum it's best to keep her distress to the minimum - you've made clear to her what has happened, so you have kept her informed, if she doesn't retain the information then for her peace of mind some 'love lies' are needed, which is not easy for you when you are grieving - maybe keep what you say vague, as you are doing (one member used the wording 'as well as can be expected' which isn't exactly a lie) or find an excuse for your dad's absence that she can relate to eg he's golfing, staying with a friend ... something he did in the past so it isn't a surprise he may be doing it again
if you have Powers of Attorney in place, these will make it easier to manage your mum's affairs for her, including making the decision to make the move into a care home - given your mum's lack of memory, maybe don't discuss it with her, just go ahead with arrangements - would she forget if you told her once, or keep the negative feeling and hold it against you?
if your mum is self-funding, ie has assets over £23250, then you can go ahead and look for a suitable care home these sites will help
https://www.carehome.co.uk/care_search.cfm
Selecting a care home (476)
https://www.cqc.org.uk/
https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=2.139333685.721471181.1503062667-213745934.1462100281#!/search
https://forum.alzheimers.org.uk/showthread.php?20354-New-resource-to-help-with-finding-a-care-home&p=262723#post262723
if you have questions, members will be able to help, and looking through previous threads will give you info
maybe start your own thread here
https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

 

[Susan57]

Hi everyone
I care for my alcoholic husband who is 70, im 57, I've yet to get him to the doctors as
A. as he keeps telling me, he went for the memory test a few yrs ago and they said he was ok.
B. he says there is nothing wrong with him.

I feel really guilty because its only in the past few weeks that I have realised that something is wrong and have been accusing him of drinking when he shouldn't be ( we have an arangement for when and how much he drinks, it's a very long story )
but he hasn't really had any cash to buy any extra drink.

Any way we have been arguing for months now about so many things like showering, clean clothes, nail cutting, eating and much more but it was the final straw when I asked him how he liked the sandwich I had bought him (the empty pkt is sitting on the worktop) he says what sandwich, um the cheese one you have eaten, I haven't had a sandwich you must of eaten it, I didn't eat it I ate my own, well I didn't eat it so you must have, by this time i was really angry and had had enough of everything and he was really irate as he has been a few times over the past months and you can see it in his face and hear it in his voice that he thinks I'm lying and just making it up but the realisation hit me very hard a few days later when I had asked him to tidy up the rubbish he had left on the kitchen worktop and all the crumbs on the floor, he cleaned the rubbish up but said he hadn't got any crumbs on the floor so I said oh well it must of been me then and went to walk off and he said it was you and your sister when you did the party food, the problem with that was we did the party food over 2 weeks before and my sister brushed the kitchen floor.
Sorry for the rant

 

[Tilly cat]

Hi Tilly
I can’t advise you on the “moving on” - but others will. My husband with VD often , when we are at home in the evenings, wants to “go home” - I sometimes try to tell him he is home - but if that’s distressing I tell him we will go home tomorrow.
I suspect for people who live alone - moving into a new place where the staff really know how to talk to them and comfort them, might settle them after a while - probably respite care to start with to see how it “fits” your mum.
Wishing your All the very best !!

Thank you for your thoughts, very helpful and comforting.