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New diagnosis

SarahEm

New member
Sep 22, 2019
4
My mum got diagnosed with vascular dementia and alzheimers 2 weeks ago. I'm feeling lost and scared what happens now. I know she should be getting appointments with psychiatrist, occupational therapy, nurses and an appointment for an ecg. I'm terrified that she might be exposed to coronavirus but also worried what will happen if she doesn't have these appointments. My brother lives with her and he's a key worker so he's terrified of passing it on to her and is staying upstairs whenever he's in the house. She's not accepted her diagnosed and I've not been able to speak to her properly and can't go to see her. Neither of us know what to do
 

karaokePete

Registered User
Jul 23, 2017
5,286
N Ireland
Hello and welcome @SarahEm, I hope you find the forum to be a friendly and supportive place.

At diagnosis it's normal for everyone to be sent into a complete spin due to a condition known as anticipatory grief for a way of life that is lost. Things will be harder in the current circumstances. You will get understanding here.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,103
68
Dundee
Hi @ SarahEm and welcome to the forum.

I'm sorry to read of your situation and understand how worrying it must be for you. I'm glad you found this forum as I know you will get lots of help and support here.

I wondered if it would help to talk these things through with the Admiral Nurse service. They have a helpline you could call.


0800 888 6678

Take care and keep posting here.
 

canary

Registered User
Feb 25, 2014
11,656
South coast
You may find that these appointments get deferred.
OH has been referred to the urologist because he is getting recurrent infections, but we have had a letter from the hospital saying that, in view of the current situation, they are not sending out appointments, except for emergencies, but he would get an appointment as soon as possible.
 

jennifer1967

Registered User
Mar 15, 2020
37
my husband has not long been diagnosed although it was clear a year ago. its like what happens now. someone from alzheimers society phoned me and a referral to the admiral nurses was done. i am lucky i was a carer at a care home but its like losing that person a tiny bit at a time. i focus on the day. nobody knows what the future will be like how long things will stay the same for.
 

Whisperer

Registered User
Mar 27, 2017
107
Hampshire
Dear SarahEm

This is clearly a difficult time for you and your brother. A diagnosis is hard for everyone and throws up many mixed emotions. Let me try and suggest a few practical steps. Please remember I am just trying to help, I know very little of your circumstances.

1) Can you set up something like Skype to see your mother when you call her? It would perhaps help you seeing your mum as well as talking. Very likely that works both ways.
2) Your mum not recognising her diagnosis may unfortunately be a longer term factor not just short term. Please google the condition Anosognosia. I am not saying your mum will always be this way, her reaction now may simply be a defensive one. In the current circumstances with everything else going on I suggest let this ride, do not make an issue out of it.
3) I am not sure how bad your mum’s condition is. Just remember a diagnosis can help put a name on what is happening, but the actual condition will be as it was three weeks ago before it got a name. What I am trying to say is do not let a title for an illness add to your concerns or anxieties. Yes there are steps to take but many have long waiting times unfortunately, even before Coronavirus impacted on services.
4) Let’s try and break this down into the here and now and the longer term. I suggest with the demands on your brother in his employment you will need to help your mum as much as possible. He lives with her but most stay distant. Ironically you live away but may in a strange way be closer to her. Okay here are a few suggestions.
A) You say you cannot go to see her. But can you drop things at the property such as groceries, medications, etc. Arrange to leave on the doorstep, in the shed, where ever is practical. Remember the rules on social distancing. Could you see your mother in say a garden. Please see the threads on Coronavirus for other possible ideas.
B) are there things your mother likes to do in doors which you can encourage such as reading, puzzles, TV, etc. Filling her time means she is busy and entertained, perhaps a worry off your mind.
C) Presumably the diagnosis was via a memory clinic. A few weeks ago may now seem like a different world, a life time ago, but did they advise what to do next, give you any leaflets. If so ring the contacts given and seek advice. Be minded by what you are told. No one will wish to put your mum in harm’s way. In “normal times” there would be a path to follow after diagnosis, but many here will confirm even before Coronavirus that route was not straight forward at times. Contact and discuss, it hopefully will ease some of your perfectly understandable anxiety. Consider ringing the Alzheimer’s Society contact line or that for Admiral Nurses. Get some practical support, including a chance to talk through your feelings. Have a look at the care guide on here, but just the early or relevant sections At this early stage.
D) Please understand my next points are meant with the best will in the world. We have never spoken, the circumstances are very far from ideal but I am trying to help a stranger. When a diagnosis arrives it comes with a whole range of emotions for everyone involved. For now your mum is not accepting her diagnosis and hard as it might be for you to do so, I suggest let that matter go for now. It is her way possibly of coping, which may change in the future. Now consider your reaction made worse by the fears around Coronavirus. Fear, anxiety, possibly anger about the unfairness of it all, possibly guilt over not being able to do more, etc. Please just accept these are normal reactions, hard to deal with, but they to an extent go with the territory of Dementia care. The phrase carer will start to be used by professionals for your brother and yourself. You are still your mum’s son and daughter, you just have a different role in the eyes of others as well. Dementia will progress but each journey is different. In the current circumstances please do not add to your worries by trying to project what might happen in the future. Concentrate on the here and now, practical issues, not fears and anxieties born in imagining a future as yet unknown. Let’s get through today, tomorrow, next week, etc, learning about Dementia slowly and informatively.

My response is an attempt to help a stranger, based on very limited information. I have no idea how bad your mum’s Dementia is, how near you are to her, etc. Please make use of this forum. Please most importantly recognise you have just had a major event in your life, received in more testing times than normally would be the case. You will feel off balance, upset, etc. Just take a little time to really speak to yourself. What can you practically do right now, what is next week, etc. Is there anyone beyond your brother you can talk to. If not then just come here and off load. No one will judge you. Never directly met anyone on this forum but over three years I have found everyone here is a good person. A club no one wanted to join but a membership very supportive of everyone else. Practical problems just post and an answer with good advice normally comes along fairly soon. I got advice on getting my mum through cataract surgery, not knowing how to deal with mum’s “denial” and refusal to return to the memory clinic, which filled me with guilt and anxiety over should I force the issue. My light bulb moment was understanding Anosognosia, explained to me here not by a GP or medical professional. The members of this site have walked the walk and can talk the talk. Just ask in future and guidance, advice, shared experience will amble along.

hope some of my comments helped.
 

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