Support for carers of people with MCI

Angryperson

Registered User
Oct 27, 2017
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There seems to be quite a problem for people who support people who do not have a diagnosis of dementia but who are experiencing significant memory loss, change in personality, self care issues etc. With a diagnosis it is relatively easy for other family and friends to understand, however, without a diagnosis it is so difficult to explain that the person has some issues but no one knows why. I have already discussed this with a few lovely people on this site and I am no longer as angry!
I am going to bring up something I had forgotten about. My husband’s STM problem started suddenly when he started taking Apixoban for AF. We changed to Rivaroxiban then back to Warfarin with no effect. He then stopped taking statins and after a couple of weeks he came back. It was amazing. He understood what had happened and was his old self. However, after a few weeks, he slowly regressed. He never became as bad as the worst time but his memory and self care declined.
My main issues are with the medical people who just do not inspire confidence.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Hello angryperson. I think there are probably a few people who are caring for someone with MCI.
Its a bit of a no-mans land as there are very definite problems, but there is very, very little in the way of support. Quite often MCI leads to actual dementia, but until then you feel adrift.

Interesting about the change in cognitive abilities. Ive certainly seen fluctuating cognitivity in OH, but never on that scale.
 

Angryperson

Registered User
Oct 27, 2017
34
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It was shocking and then heartbreaking when he started to decline again. We are now trying to wean him off codeine (the result of inappropriate prescriptions). Getting angry at GPs again, better stop!
 

LadyA

Registered User
Oct 19, 2009
13,730
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Ireland
When my husband was at that stage, any time there were issues or problems that had to be explained (and there were, very many), I just explained that he was having some "age related problems". People understood immediately, and in fact most responded that they had suspected as much!
 

Peachez

Registered User
Jun 19, 2016
124
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South East England
@Angryperson how good to have found you. I know you are not alone in your struggle for support, I think @big l would be interested in this thread as well. I do get frustrated at my OH, and I will have a whinge, but make no mistake, I love him and would do anything to fix this, the magic wand I need to get the man I married back has not been invented yet.

My OH had sudden onset as well, collapsing abroad a few years ago. Months of determined, but not always welcomed effort on his behalf, got us an EEG, which resulted in a year's driving ban due to suspected Epilepsy. Since he's been on anti seizure meds he's been more stable and back to driving (thank goodness, the world's worst passenger... nearly pushed the eject button several times... ). There's quite a bit of research on the relationship of late onset epilepsy and the development of dementia, one piece in particular is entitled "the Perfect Storm"... Later we had the memory test in which he tripped majorly, and was sent for a specialist SPECT brain scan. MCI was then confirmed. My step son's partner is a Dr, and we have had a frank discussion of symptoms and prognosis. She, and several other health professionals I've faced down about it, are of the opinion that he's only going to get worse.
@Angryperson @canary My OH has the most definite good and bad days, but it does seem it can be controlled somewhat by not letting him get over tired... but then he feels better and goes and puts himself out again, and round we go..

Personally, I don't use the 'age related' phrase, to me it's a disease, and not a natural part of aging. There are many who are diagnosed under 65, my OH only missed this deadline by a year. However everyone has to find their own way of coping , whatever works.

As @canary says, feeling very much adrift and all at sea, it seems there are quite a few in the same boat, we might not all end up at the same destination, but while we're here, lets bail together...
 

LadyA

Registered User
Oct 19, 2009
13,730
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Ireland
Personally, I don't use the 'age related' phrase, to me it's a disease, and not a natural part of aging. There are many who are diagnosed under 65, my OH only missed this deadline by a year.
Yes, but two points. My husband had not, at the time I'm referring to, been diagnosed officially, as he refused to attend the appointments! His doctor knew there was dementia there, I knew it, but it wasn't really obvious to more casual observers. He was a master at covering it when he had forgotten something, or done something wrong. The other point is that my husband wasn't young. He was 76 or 77 when he was finally diagnosed, and died at 84.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
I used to say that he had some thinking problems.
Now he uses a rollator, though, I find that I never have to explain anything :rolleyes::(
 

Duggies-girl

Registered User
Sep 6, 2017
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My dad is going to get his diagnosis this week. I already know he has dementia but he thinks all people his age are forgetful. I am dreading it but I am hoping it will be some kind of turning point for me and that hopefully I can get some help.

He still lives alone but only with a lot of time and support from me.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
I hope all goes well at the appointment @Duggies-girl
Neither my mum nor my OH reacted at all to their diagnosis - I think that they had forgotten as soon as they were out of the door - so it might not be so bad.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
My dad is going to get his diagnosis this week. I already know he has dementia but he thinks all people his age are forgetful. I am dreading it but I am hoping it will be some kind of turning point for me and that hopefully I can get some help.

He still lives alone but only with a lot of time and support from me.


How did it to @Duggies-girl ? I do hope whatever they told you, it will help you move forward. One of the things that is stressed by the Dementia Friends initiative (run by Alzheimer's Society), is the fact that this is not a natural part of aging it's a disease, & it's not just about memory - thinking and communication as well as planning everyday tasks can be affected. And importantly that it's possible to live well with dementia. Remember that there is so much more to your Dad than this one thing.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
@canary @Angryperson Just wanted to share something that made me laugh... OH gets up early on a Thursday to go off volunteering, he leaves early and brings me a coffee and a dog in bed before he leaves. Well it coincided with me taking a trip to the bathroom yesterday, and I returned to the dark but not pitched black bedroom to find him talking to an empty bed... he did jump when he realised I was standing next to him instead!!!
 

big l

Registered User
Aug 15, 2015
176
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I am still out here. I think this thread (?) feels like the place to fee:l not alone , not unsupported, not fearful of what happens next. it is bearable when you find other people who really do understand.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
I am still out here. I think this thread (?) feels like the place to fee:l not alone , not unsupported, not fearful of what happens next. it is bearable when you find other people who really do understand.

Hello @big l , you are quite right, finding others that really understand can make all the difference to us. Just knowing there are others out there, somehow softens some of the daily challenges, especially in this early stage of the unknown when we can feel all at sea... It's really good to hear from you. :)