I don't often feel defeated but this mci sometimes has me questioning my own sanity. I was an infant teacher for 36 years but the patience needed with the little people is nothing compared with the patience I need, and am having huge difficulty finding, now! a husband is there to love, revere and cherish you. mine can't anymore and it is screwing up my 'rational, reasonable response'. I so resent him and what he has - I hate myself at times. my oh is blissfully unaware there is anything wrong - it's my fault. all of it - but then I hate myself when I lose it and retaliate with anger, anger, anger. phew an outburst. but this time there's some people out there that really understand. thank god.@big l : Sending hugs to all.
Have felt on my own with this for so long, and so relieved to have found @Angryperson and @canary came along and now you too @big l !Do post if and when you can, but it's a comfort just to know you're out there
Desperately seeking support
- Thread starter Angryperson
- Start date
I feel somehow that a diagnosis of MCI is a bit of a no-mans land. It says that something is wrong, but denies that its dementia and seems terribly dismissive somehow. When OH was diagnosed with MCI I wanted to shout " no! Its not mild, not at all - theres a very big problem, but you are not listening!" However, that was at least an improvement on being told that he was depressed due to marital problems, which were my fault (of course).
Once he was diagnosed with FTD it was a huge relief and I felt vindicated - even though there are still days when I wonder whether its him, or actually me!
Rationality seems to be something we have to learn to let go of @big l . I remember being told it's like reverse childhood, he will be just as exasperating as a small child, but lack the ability to learn! I am an ex nurse, and you'd think I'd take to it like a proverbial duck. But I was always an 'I can fix this' nurse, probably why I moved heaven and earth at the start to try and find the problem, but this I can't fix, ever. Also I'm finding the line between carer and spouse challenging to say the least.
@canary, your post is very reassuring. I have often wondered if it will get easier when we eventually get a label for it. I think OH is happy to stay in denial though. A diagnosis would certainly sort the wheat from the chaff where family and friends are concerned.
I did have a moment of epiphany this week. I was shopping and thought I'd misplaced my Tesco clubcard. I went from relaxed and happily shopping with my daughter, to ballistic in the blink of an eye. Daughter took me aside to calm me down, and the light dawned. I wasn't upset about the card... couldn't care less... but the thought of explaining it's loss to OH and the stress caused at home that upset me! I am so very fed up of endless questions... when, where, what, who... on and on and on...
We've had a quiet day today, though OH hasn't left the house and slept this afternoon away, so all quiet on the western front for now. I find anger rises when I'm wanting him to be himself, and he's just not that person anymore. Yes, hahaha, MILD... that's a laugh...
He's singing in a choir concert tomorrow though, rehearsing all afternoon too, so Sunday may well be a challenging day
@canary, your post is very reassuring. I have often wondered if it will get easier when we eventually get a label for it. I think OH is happy to stay in denial though. A diagnosis would certainly sort the wheat from the chaff where family and friends are concerned.
I did have a moment of epiphany this week. I was shopping and thought I'd misplaced my Tesco clubcard. I went from relaxed and happily shopping with my daughter, to ballistic in the blink of an eye. Daughter took me aside to calm me down, and the light dawned. I wasn't upset about the card... couldn't care less... but the thought of explaining it's loss to OH and the stress caused at home that upset me! I am so very fed up of endless questions... when, where, what, who... on and on and on...
We've had a quiet day today
, though OH hasn't left the house and slept this afternoon away, so all quiet on the western front for now. I find anger rises when I'm wanting him to be himself, and he's just not that person anymore. Yes, hahaha, MILD... that's a laugh... He's singing in a choir concert tomorrow though, rehearsing all afternoon too, so Sunday may well be a challenging day
I just want to hug you. So many people find themselves in this ghastly position and think they are supposed to get on with it as effortlessly as when they were young and coping with running a household, maybe children etc. It is far better, though, to vent your anger on paper here than at him. Says me, who loses it all the time, who resents it every time she has to clear up a mess, who nags because she expects jobs to be done as they were before and stomps around irritably searching for the things that have gone missing - again! You aren’t alone. Do you have any respite in the form of him going out with friends or relatives? Can you leave him alone safely?
Sounds like we are all once capable women, used to being able fix things, struggling with the loss of the husbands we once had and the reality of not being in control. We are at the mercy of ‘health professionals’ who also can’t fix it. I am a social worker, still working in a voluntary capacity, sorting out all sorts of situations but cannot sort myself out. One hell of a blow that is!Rationality seems to be something we have to learn to let go of @big l . I remember being told it's like reverse childhood, he will be just as exasperating as a small child, but lack the ability to learn! I am an ex nurse, and you'd think I'd take to it like a proverbial duck. But I was always an 'I can fix this' nurse, probably why I moved heaven and earth at the start to try and find the problem, but this I can't fix, ever. Also I'm finding the line between carer and spouse challenging to say the least.
@canary, your post is very reassuring. I have often wondered if it will get easier when we eventually get a label for it. I think OH is happy to stay in denial though. A diagnosis would certainly sort the wheat from the chaff where family and friends are concerned.
I did have a moment of epiphany this week. I was shopping and thought I'd misplaced my Tesco clubcard. I went from relaxed and happily shopping with my daughter, to ballistic in the blink of an eye. Daughter took me aside to calm me down, and the light dawned. I wasn't upset about the card... couldn't care less... but the thought of explaining it's loss to OH and the stress caused at home that upset me! I am so very fed up of endless questions... when, where, what, who... on and on and on...
We've had a quiet day today
He's singing in a choir concert tomorrow though, rehearsing all afternoon too, so Sunday may well be a challenging day
This area is for people who are seeking a diagnosis. I really don't mean to be rude but I am a person with serious memory and neurological problems I come on here to talk to others in a similar situation, when I see comments like these all it does is make me think oh my I wonder if my husband secretly resents me ( for something which is totally beyond my control). I totally understand that people need to get things of their chest but it can effect the mental health of people with dementia to read these sorts of comments and feel burdensome. Maybe these comments would be more appropriate in the carers section. Again I don't mean to be rude just putting it out there that although people don't mean to some of the comments on here can come across a bit derrogatory and upsetting to read from the perspective of dementia. Thank you
you are not rude. far from it. you've given me a sight of the 'other side'. my oh loves me and I love him and that will never change. I never thought for one moment of people reading my rant that could be upset and worried. I was looking for reassurance I think that - sometimes it's hard. now i shall add 'for us both'. thank you for showing me that. affect. i'm so sorry. a lesson at looking at both sides of the story.
I am so, so sorry. It was me that started the thread and my main issue is that we don’t have a diagnosis and it makes dealing with the memory problem so much more difficult. My husband resents me just as I resent him for not acknowledging there is a problem. We didn’t have a good marriage before his memory problems started. If you had a good relationship, You obviously have insight into your difficulties which is very important. I can’t see myself as a carer but I take your point.
Thank you very much for taking on board what I said it's refreshing that someone hears you. I'm sure it's hard for all partners or carers and i respect my husband a lot for staying with me and providing me with so much support. I went 2 years undiagnosed however I acknowledged something was wrong. The problem was even the most well respected neurologists were saying I was mentally ill. The usual schpeel when they don't have an answer. So.... My family thought I was lazy, putting it on etc for 2 years. I was judged non stop as well as fighting this illness and still trying to do my best for everyone. It was horrific (still is) but now I just forgive myself for not being my normal self because there's nothing I can do and that kind of thinking leads to more problems. I read somewhere above someone said their partner was doing things agonisingly slow? Has this person been assessed for PD? LBD? I have to do things very very slow now because if I move to fast I get wayy dizzy and sick and also confused much easier to take it slow. A good analogy of how I feel right now would be like a computer full of viruses (running slow and breaking down) xx
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Can I also say just because there is no diagnosis doesn't mean there is no problem. It will be hard for both of you but life is so short and poorly people can be hard to live with. Forgiveness Is a wonderful thing and can go a long way in helping someone with a dementia. Like I said I was blamed for my illness for 2 years nearly and it hurt more than dementia itself I wanted to die because I felt rejected by those I loved and i couldn't fix it. It's never the person's fault they don't want to be ill or a burden, they are suffering and let me tell you from first hand experience it's inexplicable I could never have imagined this much mental anguish. Take care all of you and i hope that diagnoses are soon made so there's a better understanding of what's actually causing the problems your seeing. Warm wishes. Emma x
This is difficult for me as you have revealed some personal details. I know the hospital and some staff there are incredibly arrogant. I work in this area in a very different field but cross paths with neurologists, psychologists and psychiatrists regularly. If you live in this area many of the GPs are not the best. It is the lack of diagnosis and the lack of insight that is the problem for me and, I think, the others here. I got really angry (not with my husband) when a trainee psychologist administered her tests without taking on board that the answers did not make any sense but they were within the range for someone with his low IQ so that was ok. He would never have made such mistakes a couple of years ago but her (false) test results told her he was not very intelligent. I also get get angry because the government tells us of the importance of early diagnosis, his GP recognises there is a problem, his sister and friend see there is a problem but the ‘experts’ all but abandon him. You must have gone though hell being blamed for all that time. I get angry with the system that really doesn’t care. I get frustrated with not knowing what we are fighting. It is not good to have any condition but it is usually better to have a diagnosis than none. Both Peachez and I seem to have the same issues. Slowness and a GP who suggests vascular dementia but not confirmed on testing. I wondered about PD - my father had this - but I think it is unlikely as he doesn’t have any other indications of this. He needs to see a neurologist, I think, but getting an appointment will be a challenge. I hope that now you have a diagnosis you are being taken seriously and looked after.
My OH had the same problems. Firstly he was diagnosed with depression, then when the things he was doing became too obvious to ignore (even to an outsider) he was diagnosed with MCI and then finally with Frontotemporal dementia.
I think that the rarer forms of dementia like FTD or Lewy Bodies are not well known so that if your symptoms do not "fit" the usual pattern everything is dismissed by the medical profession. It took 4 years to get the diagnosis and the time during that period was very hard. We were both being told (quite firmly) that there was no dementia. OH believed them and thought the marital problems were my fault so took it all out on me. I believed them and thought he could change if he really wanted to. It was very difficult for both of us, especially as OH had only limited awareness of his behaviour. Couples counseling was a disaster as he was telling the therapist things that were untrue (although he thought they were true), was not able to do things that the therapist wanted him to and constantly complained about the same points even though we had already gone through them. I on the otherhand was constantly annoyed because he seemed to be willfully ignoring my problems, seemed so manipulative and without a diagnosis I thought he was doing it on purpose. We came very close to divorce.
The only thing that saved our marriage was that deep down inside I knew this was not right, this was not the man I married and that there was something very wrong. I found myself constantly flipping between "this cant be right, Im sure he has some kind of dementia" and "hes turned into a horrible person and I am leaving". It also didnt help that mum had Alzheimers during this period and my stress levels were sky high.
My OHs diagnosis has come as a huge relief. I was finally believed (having been previously accused of making things up) and there was an explanation. Yes, once there was a diagnosis then understanding and forgiveness could come. I wont lie - I still get irritated at times (I am not a saint!), but things have become more settled and I now know much better how to deal with it all.
@tangled89 - please remember that @Angryperson @Peachez and @big l do not yet have a diagnosis for their partners (which is why the thread is on this section of the forum). I am sorry that the things said have upset you, but the people on here are confused themselves and need an acknowledgement of their feelings too. They are in this period before diagnosis and are therefore unable to be certain that it is due to dementia. Please be able to forgive them too.
I think that the rarer forms of dementia like FTD or Lewy Bodies are not well known so that if your symptoms do not "fit" the usual pattern everything is dismissed by the medical profession. It took 4 years to get the diagnosis and the time during that period was very hard. We were both being told (quite firmly) that there was no dementia. OH believed them and thought the marital problems were my fault so took it all out on me. I believed them and thought he could change if he really wanted to. It was very difficult for both of us, especially as OH had only limited awareness of his behaviour. Couples counseling was a disaster as he was telling the therapist things that were untrue (although he thought they were true), was not able to do things that the therapist wanted him to and constantly complained about the same points even though we had already gone through them. I on the otherhand was constantly annoyed because he seemed to be willfully ignoring my problems, seemed so manipulative and without a diagnosis I thought he was doing it on purpose. We came very close to divorce.
The only thing that saved our marriage was that deep down inside I knew this was not right, this was not the man I married and that there was something very wrong. I found myself constantly flipping between "this cant be right, Im sure he has some kind of dementia" and "hes turned into a horrible person and I am leaving". It also didnt help that mum had Alzheimers during this period and my stress levels were sky high.
My OHs diagnosis has come as a huge relief. I was finally believed (having been previously accused of making things up) and there was an explanation. Yes, once there was a diagnosis then understanding and forgiveness could come. I wont lie - I still get irritated at times (I am not a saint!), but things have become more settled and I now know much better how to deal with it all.
@tangled89 - please remember that @Angryperson @Peachez and @big l do not yet have a diagnosis for their partners (which is why the thread is on this section of the forum). I am sorry that the things said have upset you, but the people on here are confused themselves and need an acknowledgement of their feelings too. They are in this period before diagnosis and are therefore unable to be certain that it is due to dementia. Please be able to forgive them too.
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@tangled89 - please remember that @Angryperson @Peachez and @big l do not yet have a diagnosis for their partners (which is why the thread is on this section of the forum). I am sorry that the things said have upset you, but the people on here are confused themselves and need an acknowledgement of their feelings too. They are in this period before diagnosis and are therefore unable to be certain that it is due to dementia. Please be able to forgive them too.[/QUOTE]
Sorry for being late, have not been well. Not a nice way to lose 4lbs... @tangled89 , please accept sincere apologies for any distress caused. I tried the carers section, but found it inappropriate as we didn't have a diagnosis of anything, and also because my beloved OH doesn't seem to fit the pattern experienced by many. Others have already said it better than I can, but this thread has been a safety valve in times of frustration, and a place of reassurance - I hope it can continue to be so.
I have felt so very alone. It was never ever my intention to upset anyone.
Sorry for being late, have not been well. Not a nice way to lose 4lbs... @tangled89 , please accept sincere apologies for any distress caused. I tried the carers section, but found it inappropriate as we didn't have a diagnosis of anything, and also because my beloved OH doesn't seem to fit the pattern experienced by many. Others have already said it better than I can, but this thread has been a safety valve in times of frustration, and a place of reassurance - I hope it can continue to be so.
I have felt so very alone. It was never ever my intention to upset anyone.
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my doctor told me there was little point in a formal diagnosis - as my oh 'wouldn't take the tablets' (?) so I made myself his patient too, so he would be aware of the effect oh illness has on me. the only diagnosis of mci actually written on paper was made by the consultant after oh had 2 minor strokes 4 years ago. but all that is another story and will wait for another day. all I want to know is that everything possible is being done to help oh and indirectly, me. that seems not forthcoming.
Excellent idea to be under the same GP. That's what we have and I can keep her up to date with what's really going on at home, which she seems to welcome, and does go some way to make me feel listened to.
Your frustration and concerns for your OH are so very understandable, especially as your OH has had strokes in the past. Do you think you've seen a decline in the last 4 years? Might it be worth asking your GP about getting him re assessed by someone else?
Unbelievable! We are told the importance of early diagnosis and this response is outrageous. Although tablets can be useful for some people, my understanding is that the most important thing is to keep your mind and body active. Even the most awkward people, when confronted with the reality of a diagnosis may try to fight it. For carers it is vital to know what you are up against and for most people a diagnosis of dementia is better than no diagnosis. If there are money issues, it also opens up the possibility of Attendance Allowance and Council Tax exemption. I’m getting angry again!
I think you can still apply for Attendance Allowance as it is all predicated on what you have difficulty doing and need help with, not so much a medical diagnosis. But I think your OH does have a diagnosis of Mild Cognitive Impairment? I would put in a claim as soon as possible, setting out all the ways in which you have to help and guide him from simple, practical things to more complex areas like paperwork, financial affairs, etc.
Edit: sorry, I see the diagnosis of MCI was made some time ago by a consultant. On the form you can put the names and addresses of any doctors involved in your OH's care, so you could include both the GP and the consultant's names. If your GP is not being very helpful, have you asked for a referral to a hospital memory specialist or a geriatrician who specialises in dementia? My mother saw the latter and took the MMI (?) test. He did prescribe her Aricept but, unfortunately, she got severe headaches so had to discontinue it. But your OH should at least have the option of taking something which might slow the process down.
Edit: sorry, I see the diagnosis of MCI was made some time ago by a consultant. On the form you can put the names and addresses of any doctors involved in your OH's care, so you could include both the GP and the consultant's names. If your GP is not being very helpful, have you asked for a referral to a hospital memory specialist or a geriatrician who specialises in dementia? My mother saw the latter and took the MMI (?) test. He did prescribe her Aricept but, unfortunately, she got severe headaches so had to discontinue it. But your OH should at least have the option of taking something which might slow the process down.
Work really was the catalyst for my OH they actually sent him home because they felt he wasn’t very well as they put it. He was a manager in a large company and a very demanding roll and they felt his work was deteriorating ? He went for heart tests but came back clear he has always had a low pulse rate. Put off work for a month then went back. Work then sent him home again. OH was getting later and later coming home he was waiting for car park to empty so could find the car, he also started driving us back to somewhere we had last lived 7 years before. That’s when we went back to docs, he did a small test then sent him for assessment at memory clinic.Then CT scan. Finally diagnosed 6months later with Alzheimer’s/Dementia. OH has let himself go am trying to get him to shower now, told him have just changed the bedding and he isn’t getting in till he gets a shower he doesn’t want me going anywhere without him, if I’m in the kitchen it’s “what you doing” why don’t you sit down he was 63 when diagnosed he is 66 now, his short term memory is practically non existent still denying anything is wrong, all our plans scattered to the wind. I’m really sorry about your husband and hopefully it may well be that it’s something else that’s causing his problems. Wishing you well
he doesn’t want me going anywhere without him, if I’m in the kitchen it’s “what you doing” why don’t you sit down he was 63 when diagnosed he is 66 now, his short term memory is practically non existent still denying anything is wrong, all our plans scattered to the wind. I’m really sorry about your husband and hopefully it may well be that it’s something else that’s causing his problems. Wishing you well 
