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So fed up with all my symptoms and no-one to talk to.

Tricot

Registered User
Jun 20, 2017
113
0
France
Mostly I just try to keep calm and carry on even though everything is getting harder - organising, thinking, doing, just being.
Then I have a run of events which makes my deterioration undeniable, it exasperates me and I've got no-one to discuss it with. Left the oven on 220 degrees for 3 days, left my handbag on the front seat of the car with the door unlocked and window wide open in the supermarket car park, left half the ingredients for my lunch on the kitchen worktop and didn't realise until I took my empty plate back etc, etc.
I've been to the memory clinic and had all the tests which I pass with flying colours. They say depression is my problem. From reading this forum I understand that happens quite often.
I'm running out of steam - that's another thing - overwhelming tiredness after doing very little, so I'll stop here. Just like to find other people who feel like me. It's so lonely.
 

Sirena

Registered User
Feb 27, 2018
2,323
0
I'm so sorry to hear you are having these problems and the medical professionals are not able to help, that does sound a lonely place to be. I am sure you will get good support here. Do you have people in 'real life' you can talk to about it, or anyone who can give you practical help?
 

Izzy

Volunteer Moderator
Aug 31, 2003
65,185
0
70
Dundee
I’m sorry to hear of your problems and your loneliness @Tricot.

Pleased keep posting here. You are amongst people who understand.
 

Tricot

Registered User
Jun 20, 2017
113
0
France
Thank you Sirena and Izzy. No, I don't have anyone to talk to about it in real life. I have help in the garden and someone coming in weekly at the moment to help me get the house ready for sale. It's too big and I'm trying to simplify my life.
 

Cazzita

Registered User
May 12, 2018
606
0
So sorry to hear of your issues and fears. Keep communicating - we really do have some understanding of what you are going through through caring for others. Keep going to the doctor until you are satisfied everything has been looked into, ie blood tests, depression treatment (yes, everyone seems to have depression initially...). Take care.
 

Tricot

Registered User
Jun 20, 2017
113
0
France
So sorry to hear of your issues and fears. Keep communicating - we really do have some understanding of what you are going through through caring for others. Keep going to the doctor until you are satisfied everything has been looked into, ie blood tests, depression treatment (yes, everyone seems to have depression initially...). Take care.
Thank you Cazita. I thought I had edited the post to put paragraphs in but it doesn't seem to have "taken".

I've suffered from depression on and off all my adult life. Its treatment resistant though I would try anything if I thought it would help. So I know very well what depression feels like and and I know very well the symptoms I described are something else.

The GP considered her job done once she referred me to the memory clinic. Would love to find a new one but it's very hard to get on a GP's list unless you are a new arrival to the area.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,637
0
Yorkshire
hi @Tricot
the AS support line may be able to connect you with some face to face contact, maybe give them a call
 

Alder

Registered User
Mar 27, 2021
20
0
Tricot

Hello. Just read your post and it sounds very similar to my experience. I have suffered from depression but like you I know my symptoms now are nothing to do with depression. I am diagnosed with MCI.
My memory is an issue for me as I like you forget what I have done or doing. I forget what I am talking about mid conversations. If someone interrupts I don’t remember what I was about to say.
I get easily tired and then things get worse… coordination, walking, balance.
I had a few mini strokes and they told me I had brain atrophy and mild small vessel damage. Since the diagnosis of MCI , I have had no follow up at all and like you feel very lonely . I feel it’s because I am aware of my inability or then finding out that I have done stupid things.
Don’t know if this helps but at least you know of someone else experiencing similar difficulties x
 

Tricot

Registered User
Jun 20, 2017
113
0
France
Thank you, Alder. I'm very sorry that you too are experiencing these troubling symptoms but must admit it's a comfort to me to read of someone in the same boat.

I read so often that most people are unaware of their deterioration and that must be a blessing for them but hard on those close to them. I lost my husband last year. He had been ill for quite a long time. I'm so glad I wasn't this bad at the time as I wouldn't have coped. But it means I'm now on my own to deal with this thing. It's hard. Do you have anyone to help you, Alder?
 

Alder

Registered User
Mar 27, 2021
20
0
Tricot
How kind of you to reply.
I am very sorry to hear of the death of your husband. That must have been so difficult for you. It’s quite a lot of things to get used to and now all the symptoms you are experiencing as well. You are also moving house so that is also an exerts stress point although it will be worth it in the end. Less things to look after etc but it also means moving away from the familiar.

I do have a partner who moved in with me last year( we had been friends for a very long time) in order to help out. As everything it’s a mixed blessing because some days I’m quite hopeless but other days can be a bit brighter.
Do you think it’s worth going back to the GP or being referred to a memory clinic?
One of the problems I have is that I buy the same thing over and over again as I forget I’ve done it. When I see the articles I then remember and feel distressed. But then I might still buy the same article another time! I had nine boxes of gravy granules in my cupboard. The memory clinic could offer me no help or explanation.

I think it’s good to chat with others who are experiencing similar symptoms as that means someone else understands. Partners however supportive don’t fully get it. I guess you have to walk in someone else’s shoes.
 

Alder

Registered User
Mar 27, 2021
20
0
Tricot
How kind of you to reply.
I am very sorry to hear of the death of your husband. That must have been so difficult for you. It’s quite a lot of things to get used to and now all the symptoms you are experiencing as well. You are also moving house so that is also an exerts stress point although it will be worth it in the end. Less things to look after etc but it also means moving away from the familiar.

I do have a partner who moved in with me last year( we had been friends for a very long time) in order to help out. As everything it’s a mixed blessing because some days I’m quite hopeless but other days can be a bit brighter.
Do you think it’s worth going back to the GP or being referred to a memory clinic?
One of the problems I have is that I buy the same thing over and over again as I forget I’ve done it. When I see the articles I then remember and feel distressed. But then I might still buy the same article another time! I had nine boxes of gravy granules in my cupboard. The memory clinic could offer me no help or explanation.

I think it’s good to chat with others who are experiencing similar symptoms as that means someone else understands. Partners however supportive don’t fully get it. I guess you have to walk in someone else’s shoes.
I have used an Alexa reminder to remind me of turning off the cooker and I have a dementia clock that gives date, day etc which gives me some stability. I have found the Alexa great to help with the problems you describe so wondered if they would be of help to you. Best wishes.
 

Tricot

Registered User
Jun 20, 2017
113
0
France
I have used an Alexa reminder to remind me of turning off the cooker and I have a dementia clock that gives date, day etc which gives me some stability. I have found the Alexa great to help with the problems you describe so wondered if they would be of help to you. Best wishes.
Thank you. I'll reply tomorrow as I'm exhausted from 3 appointments today. One was for an estate agent to take photos and she came an hour early and caught me on the hop. Grrr!
 

Alder

Registered User
Mar 27, 2021
20
0
Thank you. I'll reply tomorrow as I'm exhausted from 3 appointments today. One was for an estate agent to take photos and she came an hour early and caught me on the hop. Grrr!
Rest up! Take it easy. Take your time.
 

Tricot

Registered User
Jun 20, 2017
113
0
France
Sorry for delay. Yesterday completely knocked me out. I was so washed out and woozy this morning I had to go back to bed after feeding the animals. I normally (new normal) have a siesta in the afternoon but had to miss that out yesterday.

Thanks for suggesting Alexa. The last Xmas present my husband bought me was a smartphone and that has been invaluable for setting alarms. Can Alexa help in other ways?

What a good friend you have to be willing to move in and help you. I too replace items when I go shopping, get home to put them away and find I've already replaced them. The reverse is true for me too - thinking I've replaced something then when I go to get it out the cupboard I realise I've forgotten to buy it.
Hope you don't mind me asking but how did you come to be diagnosed with MCI? Are you still supervised by the memory clinic?

Have a good weekend.
 

Alder

Registered User
Mar 27, 2021
20
0
I had a mini stroke and had been suffering lots of brain fog symptoms. They did scans MRI etc of my head and said they identified the stroke area and said I had brain atrophy more than was expected for my age plus small blood vessel damage.
My GP did a screen test and I could not do the clock test at the time and had been doing dangerous stuff like leaving the cooker on, burning saucepans and confused about reading clocks
The lockdown occurred and consequently I had to wait many many months for someone to come and do the memory test.
Some things were too simple but somethings were difficult. To be honest I had gotten my ability to be more articulate… my speech had been affected.
Then he said he would look at my X-rays and then phoned me up to say I had MCI
Nothing else was suggested, not even a leaflet.
I have had to work on myself, doing word games every day, learning how to cook a sponge cake and sequencing stuff.

I still have loads of problems with memory. I could not recal what I did for Xmas and cannot remember the contents of a programme I watched yesterday. I have no clue about stuff but remember when I see them, for example my clothes.
To be honest if my friend had not moved in I would find it very hard to cope.
I have difficulties navigating shops and have issues with walking.

But to be honest there has been no follow up and no help. The gains I’ve made is through trying to break things down and practice. I was a special needs teacher and so had worked with working out how to overcome difficulties. I now find I do it for myself and sometimes it works and sometimes it does not.
Some times I feel quite down because I am so aware that I am not the person I once was. Many people are much worse but this is not the person I once was and it’s taken is taking lots of adjustments.

Im not surprised you were tired yesterday. Thinking and doing things are hard work. It seems you have to work harder to do stuff that once was just automatic thought.

As I said previously, you have so much on your plate at the moment as selling and moving house is stressful at the best of times. Go gentle on yourself.

if you find you are leaving the cooker on etc try and find a way to counteract that… I use Alexa. I now try and use a routine which is a pain because I was a spontaneous person.
I am now culling my wardrobe so that I don’t have too many choices and I might remember what I’ve got.

I hope you do not mind me going on… d I hope you find something of worth in it.
Now try and have a relaxing weekend.
Best wishes to you.
 

Tricot

Registered User
Jun 20, 2017
113
0
France
Some times I feel quite down because I am so aware that I am not the person I once was. Many people are much worse but this is not the person I once was and it’s taken is taking lots of adjustments.
.

Thinking and doing things are hard work. It seems you have to work harder to do stuff that once was just automatic thought.



I hope you do not mind me going on… d I hope you find something of worth in it.
These things I have quoted - it could be me writing them. Very true. It"s like running to stand still.
So thank you, I don't mind at all you going on! Just sorry there doesn't seem to be any follow-up for you.
Best wishes.
 

Tricot

Registered User
Jun 20, 2017
113
0
France
I didn't mention losing things and how exhausting it is trying to find them again. It can take up so much of my day.

This afternoon I lost my house keys and I was going backwards and forwards from the car to my handbag and back again thinking if they're not in one place they must be in the other. But no. This is the first time I've lost my house keys. I know they're not really lost. They're here somewhere. I will have another look later.

A worrying thing is when I go to get something and it's not in its normal place my first thought is that someone has stolen it - that being the only possible reason it's not where it should be. This is worrying for two reasons. Firstly, I know quite well that nobody has been in my house and secondly it worries me because I've read so many times about PWD accusing other people of theft and I just worry if it's another sign. So often I eventually find what I'm searching for in the first place I looked.
 

Alder

Registered User
Mar 27, 2021
20
0
Hello
Try and put your keys in a bowl or similar and put them there everyday. I have had to adjust by being more prescriptive about where I put things.
I once thought I had lost my car keys and had the garage look all over for them only to find them in my purse.
So I try and put them in the same place in my handbag etc when I go out everywhere.

One of the reasons I think I was identified with MCI rather than dementia is that I could think things through.
For example I had to put water etc into my screen wash and I thought it was the wrong car. In my mind I was identifying a car I had long ago not the current one. But I re think and realise my mind is playing tricks on me.
This happens quite a lot but I talk my way out of it. Just some ways I’ve learned to cope with odd things.
I hope you find your keys soon . Xx
 

Lynmax

Registered User
Nov 1, 2016
815
0
I wonder if it would help with any future doctors appointments if you kept a diary or list of the incidents you have described, things you are having problems with? I wrote a letter to my mums doctor of all the unusual behaviours I noticed mum doing such as forgetting how to operate the tv remote control, forgetting where keys were, walking home from the shops when she had gone in the car, making cups of tea without boiling the water, buying the same things at the shops every time she went, getting muddled up writing cheques etc etc etc. Having it in written form was helpful as it is easy to play down problems when with a doctor or forget them or get agitated which is not helpful.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,637
0
Yorkshire
hi @Alder and @Tricot
some members have mentioned tracker key fobs have helped them find the things they are attached to, not just keys but purse, mobile phone etc
maybe something such as those here:

if you're interested in useful technology, it may be worth looking at threads in this forum: