Memory concerns since daughter passed away.

[dori2o]

Hi everyone.

This is my first post so please be gentle.

I'm a 43 year old male from Gtr Manchester.

Our youngest daughter passed away suddenly and unexpectedly in July 2016, she was 12 years old whilst we were in a family holiday in the UK.

It was utterly devastating and we are still having issues with mental health some 7 or 8 years later.

Prior to that event however I really don't recall having any major concerns over my memory.

Since that event I have serious concerns.

A little family history......

My Nan who recently passed away suffered with Alzheimer's and Schizophrenia for the last 10 years or so if her life.

My Mum has been diagnosed with early onset Alzheimer's 7 years ago.

Since our daughter passed away both myself and my Wife have suffered with severe mental health issues, and we have both been diagnosed with PTSD.

Prior to the lockdowns I was receiving help in the form of EMDR therapy for mental health, specifically PTSD. This stopped when lockdown started and following the end of lockdown restrictions our local NHS is no longer able to provide this as they have no trained therapists.

I've not had any support from the NHS since April 2020.


My Concerns.


Shortly after my daughter's passing, around the time when I went back to work, I started to notice that I was having difficulty remembering things at work, especially people's names.


I put this down to having been off work for 4 months, but things never got better.

Now things are worse. I have to constantly write things down. I have post-it notes all over my desk with reminders, I also have alarms set on my phone to remind me to take medications and tell me which ones to take.

I'm forgetting things related to my job (software developer) like basic code functions etc. Things I've done in the past without second thought now take much longer as I have to look stuff up.

I'm prescribed Fentanyl patches for a long term chronic pain condition which is degenerative, and every year when we buy a calendar/diary I have to plot out the 3 day cycle of the patches to prompt me to change them at the right time.

People's names are the worst thing for me to remember, even people I speak to and work with on a regular basis. It's really embarrassing not remembering people's names, or calling someone by the wrong name.

Another new development in the last 6 months is when playing guitar.

Songs I've played for years, decades, I'm forgetting notes/chords, forgetting lyrics.

It now takes 3 or 4 times as long to learn new songs as I struggle to remember chord/note sequences.

Another thing I've noticed with this is that I'm losing melody. I.e. when I'm playing I'm not playing in time or to the correct melody or correct timing or strumming pattern.

Again, a lot of these songs I've played for 20 or 30 years and until recently I've never had a problem.

I have spoken to medical health professionals both in the NHS and privately, but many of them simply write off my concerns as being linked to my mental health issues.

The explanation is that my mind is struggling to file things away correctly because of the trauma of our daughter's sudden death, or is simply not creating the memory at all.

I joined this group to ask this question and get other people's opinions. Opinions from those who suffer with, or deal with the consequences of this awful disease.

I'm not seeking a diagnosis from this group,but an understanding of what the opinions are from people with experience, so I can go back to the NHS and get further with them than I have been able to in the past.


A couple of years ago, a mental health therapist I was seeing privately, who also deals with Alzheimer's/Dementia patients sat down with me and performed a test. It involved a number of memory based questions.

I scored quite low, and the therapist said that with those scores he would normally recommend seeing a specialist. However, he again attributed this as being more linked to the issues with mental health/PTSD than an issue with Alzheimer's/dementia.

Could I please ask for people's thoughts?

Thank you all for taking the time to read.

 

[Izzy]

Welcome to the forum @dori2o.

First of all may I say how terribly sorry I am for your loss. It’s incredibly tragic and I can’t begin to understand what you must have gone through then and have been going through ever since.

My first thoughts are that you should print out what you’ve told us in this post and send it to your GP. Of course the symptoms may be due to the trauma you have faced and the PTSD you have been suffering since your loss. It can’t help though that you’re so worried about possibly having dementia. I would certainly go back to the NHS and ask for more assessments given the information you can share.

I’m sorry, I’m sure that’s not a great deal of help but I just wanted to say that I’m glad you’ve found this forum. You’ll find understanding and support here.

 

[Gosling]

Hello @dori2o and a welcome from me also to this friendly and supportive forum. I am glad you have reached out, and shared your story. I am so sorry for your loss and the traumatic effect this would have had on your family.
I agree with the above, to print off what you have written here and show it to the GP. I'm in no position to say whether all your symptoms are linked to PTSD or whether there is anything else dementia related going on. . I would certainly try to get your GP to push you forward for more assessments as you clearly and naturally are very worried.
Please do remember on this forum, you will always find members who really do want to help, sharing their own experiences. Good luck.

 

[Grannie G]

Hello @dori2o

I have nothing to add to the excellent advice given by @Izzy but I echo hers and @Gosling's sorrow for you and your wife on the loss of your daughter.

I do hope your GP will try everything possible to help you. Your grief is so raw you are unable to help yourself.

 

[Jaded'n'faded]

So much sorrow in your life - I am so sorry.

What the professionals have told you is certainly true - that when you have a lot on your mind (plus your grief and PTSD), you're probably not 'laying down' memories as well as you would if your mind was 'unburdened'. But I do understand your concerns, especially with your family history.

On reading your post, the thing that stuck out for me was that you're on various meds, not least, Fentanyl. That's heavy stuff! Have you consulted the leaflets that come with your meds to see if memory problems, cognitive issues, etc, are among the side effects? If you are taking more than one drug there can be interactions between them too, which can make things worse.

Because of your mental health issues, it will be hard to work out if the things you're experiencing are due to that or something else. My suggestion would be to keep a detailed record of the issues you have each day, then take it with you when you next see the GP/specialist. A written record will give a much better picture than just telling them that things are not improving or getting worse.

I hope you'll let us know how you get on and I hope things improve for you (and your wife).

 

[Tricot]

On reading your post, the thing that stuck out for me was that you're on various meds,

Hello @dori2o, it could be that the meds plus the stress you have suffered over a prolonged period because of your daughter's tragic death have made you deficient in vitamin B12. I was very surprised to learn that vitamin B12 deficiencies can mimic early dementia. That's why Vitamin B12 tests are included in the initial blood tests carried out by memory clinics.

Such a good idea to keep a detailed record of the issues you experience to show to your GP. Good luck to you.

 

[dori2o]

Hi,

Apologies for not coming back sooner.

I've had some difficulties this past week with mental health as things start to pile up, but I'm starting to work through them.

Thank you all for the advice.

I am going back to the GP and will take a print out of my opening post to help explain my concerns.

I'll come back and update you all with any progress.

Thank you all again.

 

[Izzy]

Thank you for the update @dori2o

I’m glad you’ve going back to the GP and it’s such a good idea to print off your first post. I hope the appointment goes well for you.

 

[Ellie2018]

Hi,

Apologies for not coming back sooner.

I've had some difficulties this past week with mental health as things start to pile up, but I'm starting to work through them.

Thank you all for the advice.

I am going back to the GP and will take a print out of my opening post to help explain my concerns.

I'll come back and update you all with any progress.

Thank you all again.

I am so sorry for your loss. I can only add that I have a family member with PTSD and chronic significant back pain and most of what you have said sounds very familiar. I have heard and seen the positive impact of EMDR, I’d suggest not accepting they don’t have therapists and see if you can get one from another area. It may not be possible but I’d certainly try. Good luck, I hope you get the help from the GP.