Got our diagnosis over the phone a week ago .

[Margaret2020]

Good morning
We had an appointment at the memory clinic at the end of April but with covid agreed to have the diagnosis straightaway as it was going to be over the phone . That part went well and I’ve had good support but being in lockdown with no human contact I obviously am struggling now to come to terms with being a Carer. It’s my husband’s illness but it’s mine too. So the forum has frightened me as i realise how wide the diagnosis is , mixed dementia with Alzheimer’s for s fit and active 80 year old and I really don’t know where to start. A friendly voice would be a good start .

 

[Grannie G]

Hello @Margaret2020. I would like to be the first warm and friendly voice to welcome you and i`m sure there will be more.

I agree the illness will affect both of you .

I understand how frightening a diagnosis like this can be and please give yourself time to adjust to it and collect your thoughts.

Sadly because of the coronavirus you will be even more limited to accessing help and the Alzheimer`s Society has many factsheets which might help you collect your thoughts.

Hold on to this number if you need immediate advice.

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

Please have a look at these Factsheets

Publications and factsheets

We produce a wide range of publications and factsheets designed to support and inform anyone affected by dementia.

www.alzheimers.org.uk

 

[Cat27]

Welcome from me too @Margaret2020
You've come to the best place for friendly voices & support so please keep posting.

 

[Sarasa]

Welcome @Margaret2020. This is a great place for help and advice.
Have you got family or friends that can support you, even remotely by phone calls and skype conversations? Also it might be worth checking up what you're local council is doing in the way of supporting people who need a bit of extra help at the moment.
Keep posting, there are lots of friendly voices here.

 

[canary]

Hello @Margaret2020 and welcome from me too.

When you first get the diagnosis it can be totally overwhelming, even if you are expecting it, and can take a while to come to terms with. Please dont get frightened by everything that you read on here. Not everything that you read about will happen to you and your husband and even if it does it may be quite a long time ahead. Things happen gradually, we can advise and you will find that you will be able to cope.

 

[Pete1]

Hi @Margaret2020, a warm welcome to the forum. I totally understand when you say that it can feel quite frightening looking at the forum - what I would say is that everyone's journey is different. There will be similarities and experiences that can be shared to help a particular problem you are wrestling with, but by no means does everything apply to everyone. It is challenging at times as I am sure you are finding. I can only imagine how it must feel trying to come to terms with the diagnosis and the challenges it presents during lockdown, it is difficult enough in normal times. Is there anything specifically that you need help with at the moment?

 

[Philbo]

Hi @Margaret2020 and welcome from another friendly voice.

Some great advice already but to add to this, many (if not all?) of us will have felt the same emotions at the start of our "journey".

The initial fear and apprehension is often referred to as anticipatory grief - often after reading/researching about how dementia can progress, yet having to come to terms with what lies ahead.

I can remember after initially coming across various websites, such as the Alzheimer's Society, Age UK, I tried to avoid the subject, almost burying my head in the sand. But as the stark reality of having to support the person with dementia sinks in, you quickly realise that you will need all the knowledge and advice you can get.

For me, six years ago, I was thankfully able to find a local support group, who held a dementia coffee morning each month. From there, I was able to glean loads of useful tips and contacts for a range of support organisations in our area.

Of course, this dreadful pandemic and associated restrictions have temporarily halted any face to face support, which in a way has highlighted just how valuable, organisation such as AZ Talking Point are in helping us deal with what is a very cruel disease.

I found that a good place to start was to search online for Dementia Support in your area. The Alzheimer's Society "support near you" ( https://www.alzheimers.org.uk/find-support-near-you ) and Age UK (https://www.ageuk.org.uk/services/in-your-area/) have a lot of useful information and links.

I hope this helps in some way so please keep posting - you are not alone.

Kind regards
Phil

 

[Margaret2020]

Hello lovely people who responded to me so wonderfully 20 months ago when we’d just had the diagnosis.
Not a lot has changed since then as it’s still just me here plugging away and trying to “live well”.
At least his adult children get it a bit more as we’ve spent time with them so they’ve had to see how it affects him and since his condition is slow developing I’ve not told that many people.
Now I think I need to .
What sort of reactions have people had when they share the news that the diagnosis is mixed dementia with Alzheimer’s. I feel I didn’t want to disclose it generally as I think people will
react in unhelpful ways?
For example my sons mother in law (who heard on the grape vine) asked me last night about driving , as though he shouldn’t be , but we’ve gone through the reporting processes and he’s cleared to drive til
Next birthday then we review ….This sort of thing gets me down !
I think I’m right to keep it close . What do others think?

 

[jennifer1967]

my husband had his diagnosis, vascular dementia. a month before your husband and went into lockdown and shielding on his birthday in march. we heard on the phone as well. we told the 4 children at the same time then and his sister who lives quite far and is older than him. we didnt do an announcement but mentioned it in conversation to the neighbours so if they saw him struggling out then they were help him or tell me. they are very supportive in a casual way, if i knocked the door, they would help. im disabled myself so they will help. we have never had any problems and if they ask after him, it doesnt matter. he forgets their names sometimes and they just say that he can call them what he likes, they will see answer. its not a big thing to them because i havent made it a big thing.

 

[Violet Jane]

I’m afraid that some friends (and relatives) will drift away, particularly as the dementia progresses. I think that it’s worse if there isn’t a resident carer who can act as a bridge, manage social situations etc. When a PWD lives alone most people will pull away if they might end up in an awkward situation eg the PWD does not recognise them / behaves oddly / has a toileting accident / lives in squalor / is demanding and won’t let them leave.

As for the driving question, I think that you’re taking it too personally. Many people with dementia do have to stop driving. Some will be ordered to stop immediately (my elderly friend is one). Others will be allowed to keep their licence after a driving test. Actually, there is a huge list of conditions which must be reported to the DVLA including dementia but I rather suspect that many people don’t. I think that a diagnosis of dementia might have to be reported to the insurance company as well but I’m not sure. Perhaps others can confirm whether or not this is the case.

 

[Margaret2020]

my husband had his diagnosis, vascular dementia. a month before your husband and went into lockdown and shielding on his birthday in march. we heard on the phone as well. we told the 4 children at the same time then and his sister who lives quite far and is older than him. we didnt do an announcement but mentioned it in conversation to the neighbours so if they saw him struggling out then they were help him or tell me. they are very supportive in a casual way, if i knocked the door, they would help. im disabled myself so they will help. we have never had any problems and if they ask after him, it doesnt matter. he forgets their names sometimes and they just say that he can call them what he likes, they will see answer. its not a big thing to them because i havent made it a big thing.

Thanks Jennifer
That’s really helpful to relate to my own situation

I’m afraid that some friends (and relatives) will drift away, particularly as the dementia progresses. I think that it’s worse if there isn’t a resident carer who can act as a bridge, manage social situations etc. When a PWD lives alone most people will pull away if they might end up in an awkward situation eg the PWD does not recognise them / behaves oddly / has a toileting accident / lives in squalor / is demanding and won’t let them leave.

As for the driving question, I think that you’re taking it too personally. Many people with dementia do have to stop driving. Some will be ordered to stop immediately (my elderly friend is one). Others will be allowed to keep their licence after a driving test. Actually, there is a huge list of conditions which must be reported to the DVLA including dementia but I rather suspect that many people don’t. I think that a diagnosis of dementia might have to be reported to the insurance company as well but I’m not sure. Perhaps others can confirm whether or not this is the case.

 

[Margaret2020]

Gosh that’s helpful . Thanks .
I’m protecting us outwardly and our situation about the driving and not thinking realistically . The mother-in-law was just being factual. Yes we’re in the system for the driving , yearly assessments and tests.
Thanks as well for affirming about reactions to expect from others… I’m going to muddle along and quietly only do on a need to know for now and not make a thing of it . You’ve helped !

 

[CAL Y]

Hello @Margaret2020 . Regarding the driving. Are you a driver yourself. If so it would be advisable to monitor your husbands driving very carefully.
In the year between assessments an awful lot can happen, as I found out with my husband. In our case he was driving perfectly well and on the same day did something very dangerous. The following day I sent his licence back to dvla.
Then came the tricky bit. I then persuaded him that it was at his request.
Its an awful thing but you might find yourself having to tell, what is on this forum called love lies. It’s a heartbreaking thing the first time you do it.

As for people shying away from you after the diagnosis, I’m afraid this is always going to happen.
It really is a time when you find out who your friends are. His daughters were almost invisible but our friends have been fantastic.
My husband died from cancer 2 weeks ago and the friends were the ones who visited until the end.
His funeral is on Tuesday and even though it is a non religious event at the crematorium, one friend told me yesterday that when we get back to our village he has arranged for the church bells to be ringing.
Sorry Margaret, I didn’t mean to make it all about me and don’t mean to put a downer on your situation. You have done the right thing joining the forum because you will find that everyone on here has been through, or is still going through the same situation as yourself and I have to say that you are talking to the experts.
Many doctors know much less than we do about the condition.

I send you all my good wishes and hope you find strength to cope. Keep posting.
Carole.x

 

[Suesue.G.]

CAL Y, please accept my sincere condolences. I hope that your husband's funeral goes as you, and he, wanted

 

[CAL Y]

CAL Y, please accept my sincere condolences. I hope that your husband's funeral goes as you, and he, wanted

Thank you Suesue.G.

 

[B72]

My husband gave up driving long before we had the diagnosis. He knew he was a danger. I feel very grateful that he was so caring and responsible. (Although at first I hated having to do all the driving. like with so much, I’ve adjusted now).

I find that he’s not the only one who’s changing. I am too. In some ways I’m more understanding and patient (sometimes ?), but I have vivid anxiety dreams, and dreams about being lost and alone and trying to find my way home!

Support from family and friends can be difficult- at my husband and my age, our friends have health problems too. And whenever there’s been a crisis over the years, it’s always been surprising who has been sympathetic and helpful and who hasn’t.

Somehow, one just learns to adjust and cope.

 

[Jaded'n'faded]

The trouble with driving is that the day before the person gets lost, misinterprets a road sign, fails to react in time or forgets what the clutch is... they were driving just fine.

 

[B72]

My husband wasn’t. His reactions were appallingly slow. I’d been stressed by his driving for ages. But he came to the conclusion he had to stop, when he turned left on a roundabout from the middle lane. He hit a car with a young family in it. No-one was hurt (or course the minimal damage was still very expensive), he was very shaken. He said quietly, those children could have been hurt. But his reactions had been appallingly slow for ages (and I’d felt very helpless).

 

[Margaret2020]

Hello @Margaret2020 . Regarding the driving. Are you a driver yourself. If so it would be advisable to monitor your husbands driving very carefully.
In the year between assessments an awful lot can happen, as I found out with my husband. In our case he was driving perfectly well and on the same day did something very dangerous. The following day I sent his licence back to dvla.
Then came the tricky bit. I then persuaded him that it was at his request.
Its an awful thing but you might find yourself having to tell, what is on this forum called love lies. It’s a heartbreaking thing the first time you do it.

As for people shying away from you after the diagnosis, I’m afraid this is always going to happen.
It really is a time when you find out who your friends are. His daughters were almost invisible but our friends have been fantastic.
My husband died from cancer 2 weeks ago and the friends were the ones who visited until the end.
His funeral is on Tuesday and even though it is a non religious event at the crematorium, one friend told me yesterday that when we get back to our village he has arranged for the church bells to be ringing.
Sorry Margaret, I didn’t mean to make it all about me and don’t mean to put a downer on your situation. You have done the right thing joining the forum because you will find that everyone on here has been through, or is still going through the same situation as yourself and I have to say that you are talking to the experts.
Many doctors know much less than we do about the condition.

I send you all my good wishes and hope you find strength to cope. Keep posting.
Carole.x

What a wonderful supportive response you’ve given me Carole.
Every good wish for your farewells on Tuesday.
I’ll be thinking of you .
I’m hearing this , that friends are key.
Yes I’m on it with the driving . We had such problems with his own dad and driving and I always thought my husband would decide/ accept when he could not drive but what an eye opener all this is!
I’m seeing that I’m going to need to tell people what’s going on ….I’m actually seeing a lot of things more clearly !
After today when things collapsed into chaos I think I’m going to be on here a lot!
Thanks so much x

 

[JaxG]

Hi @Margaret2020 . my husband was diagnosed October 2020, also over the phone , during a series of lockdowns. The doctor had already told him to stop driving due to his symptoms. The diagnosis was a huge relief after some years of changing behaviour and personality. We have dealt with it by telling everyone, for me it was too much to deal with alone since his behaviour has been challenging to say the least. Neighbours have been amazing and watch out for him, some friends have fallen away but it shows who your real friends are. The most infuriating thing for me is Host Mode where he can be charming to others and just evil towards me. I have found this forum invaluable, it is just reassuring to know you are not alone.