First Memory Clinic Appointment

[Gosport Nancy]

My first memory clinic appointment was this afternoon. It felt really strange that I needed someone to support me with this. I'm now in my early 60s and feel like I need a grown-up with me to hold my hand.

We met with a doctor who put me through a bunch of memory-related tasks and then sent us back to the waiting area so she could make an assessment of the information gathered and look at the scan that I had back in June this year.

I have been told that the results of the tests today are inconclusive. The scan result was that it showed minimal to moderate shrinkage compared to scans of healthy people of my age group.

I now won't be seen by the team for a year to check my progress and I have been referred to a neurology team for a bunch of further investigations to exclude other conditions.

I really feel like I have been left in limbo as I still have to manage my memory issues which impact my daily life and make it very difficult to live my best life.

It's really not good news for me as without a diagnosis, I have probably a 20-year wait on the housing list for supported housing. I doubt I will live that long as I also have heart failure and am in stage four with that

 

[Bunpoots]

I’m sorry you feel left in limbo @Gosport Nancy . I hope you can find some answers soon and manage to get the supported housing you feel you need. In the meantime you have us to talk to.

 

[Gosport Nancy]

I’m sorry you feel left in limbo @Gosport Nancy . I hope you can find some answers soon and manage to get the supported housing you feel you need. In the meantime you have us to talk to.

The way it was explained to me is that they can't come up with a definite diagnosis of Alzheimer's until the brain shrinkage is more obvious on a scan. They don't take into account that the reason other people don't appear to have seen changes in me is that I don't see anyone who sees me regularly who would have reported their views back to me. It's really frustrating as I have now had to give up working in online retail because of the issues I am having. I have lost most of the website-building skills I used to have and need all sorts of disability-related support online to help me write my book. Ironically, one of the manuscripts I am working on is an account of my continuing memory loss.

 

[Gosport Nancy]

My first memory clinic appointment was this afternoon. It felt really strange that I needed someone to support me with this. I'm now in my early 60s and feel like I need a grown-up with me to hold my hand.

We met with a doctor who put me through a bunch of memory-related tasks and then sent us back to the waiting area so she could make an assessment of the information gathered and look at the scan that I had back in June this year.

I have been told that the results of the tests today are inconclusive. The scan result was that it showed minimal to moderate shrinkage compared to scans of healthy people of my age group.

I now won't be seen by the team for a year to check my progress and I have been referred to a neurology team for a bunch of further investigations to exclude other conditions.

I really feel like I have been left in limbo as I still have to manage my memory issues which impact my daily life and make it very difficult to live my best life.

It's really not good news for me as without a diagnosis, I have probably a 20-year wait on the housing list for supported housing. I doubt I will live that long as I also have heart failure and am in stage four with that

Today's update

I have just taken a call from the Neurologist's secretary, who has booked me in for December the first, only the journey for that appointment involves a round trip of 40 miles. I now need to wait for a letter and then see if I can get one of the memory clinic volunteers to take me there."
(all this has to be organised by me, despite my cognitive issues)

 

[Gosport Nancy]

So the letter from the neurology team arrived. Although I was told at the memory clinic I should let them know about the Dementia Neurologist appointment as the memory team would help on the day, I called as suggested and was told they couldn't help.

So patient transport was suggested but they just sent a driver to take me there and drop me off at reception.

Thankfully, I had the foresight to spend all of my PIP on paying a personal assistant for a couple of hours of support a week, who would drive me there and stay with me through the appointment too. Sometimes you just have to plan ahead and not rely on standard support

 

[Izzy]

That’s so good that you have managed to get a personal assistant to help you get there but especially it’s good that they’re staying with you through the appointment. Well done on planning ahead.

 

[Grannie G]

I`m sorry you`ve needed to spend so much money on support or your appointment @Gosport Nancy

If you don`t have any friends or family members to offer support, the Akzheimer`s Society has a number of befrienders and if there are any in your area one might be available

Use this link to find out.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

 

[Gosport Nancy]

That’s so good that you have managed to get a personal assistant to help you get there but especially it’s good that they’re staying with you through the appointment. Well done on planning ahead.

I'm in East Sussex where Adult Social Care has a site with a list of social services checked people that will help vulnerable people in their homes. This is where I found my PA. The site is closing down at the end of the year so many people will have to go back to employing people at their own risk.

I really need someone with me for appointments as I easily lose track of conversations and am muddled enough to get lost in even familiar buildings.

 

[Gosport Nancy]

I`m sorry you`ve needed to spend so much money on support or your appointment @Gosport Nancy

If you don`t have any friends or family members to offer support, the Akzheimer`s Society has a number of befrienders and if there are any in your area one might be available

Use this link to find out.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

Thanks for your reply. It's not a befriender that I need. I am very independent and use my own money to pay for the help I need day to day. My personal assistant helps with decluttering, gardening, decorating and cleaning. I pay her the industry standard rate as she has a lot of overheads.