How I miss sensible conversation and mutual support. I know he can't help it but I have a blocked ear and have had for a couple of weeks. So I am trying an ear popper etc and I go to talk about how it feels (which is basically very weird) and he says yes like on the telly. Well no that was a rescue from a burning building that was on the tv so no not the same. I know I can phone a friend or come on here but I want to talk to my husband. Sad so sad.
someone to talk to
- Thread starter irismary
- Start date
I know, irismary. We used to talk about everything and nothing, often argued about nothing then forgot about it half an hour later.
Sorry about your blocked ear. Is there nothing the doctors can do, or is that a silly question.
Sorry about your blocked ear. Is there nothing the doctors can do, or is that a silly question.
Hello nae sporran
Dr has finally referred me to ent. I was seen 9 months ago by specialist who said to get a scan if no improvement but gp won't refer me for a scan said ENT would have to refer me. I had paid to see specialist as I was desperate with sinus problems and gp would not refer as they say nothing can be done. Not sure how they can say that when they haven't investigated the cause. To be fair the specialist I paid to see was really annoyed with gp for two reasons - not prescribing a specific nasal spray (which has helped a bit) and for not referring me to ent via nhs especially when he found out I was caring for oh with Alzheimer's and a 92 year old mom. Its been going on for years and I do think stress makes it worse but a scan is really the way forward. Might as well have a conversation with the wall. As carers we are told to look after our own health and how valued we are. Clearly not. Sorry to rant but it is irritating me. It is crackling and popping so hopefully it is on the mend but this is the longest spell of blocked sensation ever - it usually clears in a few days. I really don't approve of paying but just felt it would speed things up a bit in the circumstances.
We used to talk so much but now he makes little sense and understands little. So sad for a man who was articulate and in his work and community life was used to talking and communicating - in effect its what he did for a living and for his "hobby".
Dr has finally referred me to ent. I was seen 9 months ago by specialist who said to get a scan if no improvement but gp won't refer me for a scan said ENT would have to refer me. I had paid to see specialist as I was desperate with sinus problems and gp would not refer as they say nothing can be done. Not sure how they can say that when they haven't investigated the cause. To be fair the specialist I paid to see was really annoyed with gp for two reasons - not prescribing a specific nasal spray (which has helped a bit) and for not referring me to ent via nhs especially when he found out I was caring for oh with Alzheimer's and a 92 year old mom. Its been going on for years and I do think stress makes it worse but a scan is really the way forward. Might as well have a conversation with the wall. As carers we are told to look after our own health and how valued we are. Clearly not. Sorry to rant but it is irritating me. It is crackling and popping so hopefully it is on the mend but this is the longest spell of blocked sensation ever - it usually clears in a few days. I really don't approve of paying but just felt it would speed things up a bit in the circumstances.
We used to talk so much but now he makes little sense and understands little. So sad for a man who was articulate and in his work and community life was used to talking and communicating - in effect its what he did for a living and for his "hobby".
Hello Irismary, don't understand your GP refusing to refer you for a scan when the specialist said he should..Maybe it's to do with who pays for it? If so that's outrageous. I thought you had a right to ask for a second opinion. As a last resort could you change your GP practice? I don't think it's that difficult. I know you don't need all this and shouldn't have to be fighting for treatment which you need. Hope you can get something sorted soon as everything is more difficult when you have health problems.
I really miss talking to my husband too, it's so sad.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I really miss talking to my husband too, it's so sad.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
My hearing became a problem about 3 months ago. I thought it was earwax and after a couple of weeks went to the doctors. When she looked in my ear she said I had a perforated eardrum. Said it might heal itself and if no improvement go back in a month. Well It didn't so I went back. I was then told I would need an appointment to go to ENT. Well I am still waiting for that!! In the meantime my hearing has come back. So I guess it has healed now. So relieved as I couldn't hear at all in one ear. Have you been to the doctors. xx
I remember when John was at this stage that "a friend" suggested that I talk to him as if he could understand everything. Needless to say, she hadn't a clue what it was like caring for someone with AD.
And you're absolutely right, when you make a remark, and your hubby answers you with something completely unconnected and random, you yearn for a conversation, no matter how mundane.
Hoping your ear gets sorted out quickly xxx
And you're absolutely right, when you make a remark, and your hubby answers you with something completely unconnected and random, you yearn for a conversation, no matter how mundane.
Hoping your ear gets sorted out quickly xxx
hugs
I'm very new to this. I've been missing talking to my Other Half for months, the misunderstandings, confusion and frustration of not being heard! He's 8 years older than me at 66 & just been Dx'd with Mild Cog' Impairment after his SPECT scan results just last week - not a great surprise to me , I've known something was wrong for 2 years now.
I hugged him a few weeks back and nearly said out loud "I miss you". I'm always biting back small talk, conversation is really scant. Luckily I can still get out on my own quite a lot, so make the most of having coffee with friends!
Thinking of getting a summer house, so when he's further on friends can come to me and we'll still have privacy. I'll have a baby monitor set up so I can hear what he's up to in the house!
The consultant has warned me that there may be a noticeable decline within the year as the pattern of loss suggests AD. Though for now, the anti- Anxiety meds seem to be helping. We've had some awful moments when he's shouted at me or been plain rude to shop staff or friends in public. It makes me cringe. Hoping to get lots of hints and tips for coping from this site, as there doesn't seem much out there for MCI carer support.
I'm very new to this. I've been missing talking to my Other Half for months, the misunderstandings, confusion and frustration of not being heard! He's 8 years older than me at 66 & just been Dx'd with Mild Cog' Impairment after his SPECT scan results just last week - not a great surprise to me , I've known something was wrong for 2 years now.
I hugged him a few weeks back and nearly said out loud "I miss you". I'm always biting back small talk, conversation is really scant. Luckily I can still get out on my own quite a lot, so make the most of having coffee with friends!
Thinking of getting a summer house, so when he's further on friends can come to me and we'll still have privacy. I'll have a baby monitor set up so I can hear what he's up to in the house!
The consultant has warned me that there may be a noticeable decline within the year as the pattern of loss suggests AD. Though for now, the anti- Anxiety meds seem to be helping. We've had some awful moments when he's shouted at me or been plain rude to shop staff or friends in public. It makes me cringe. Hoping to get lots of hints and tips for coping from this site, as there doesn't seem much out there for MCI carer support.
I've put my hands on either side of his head and tried to send healing vibes into his brain. Well not really just wishful thinking. He asks what I am doing and I say I am sending love vibes. He says he can feel them.
I'm very new to this. I've been missing talking to my Other Half for months, the misunderstandings, confusion and frustration of not being heard! He's 8 years older than me at 66 & just been Dx'd with Mild Cog' Impairment after his SPECT scan results just last week - not a great surprise to me , I've known something was wrong for 2 years now.
I hugged him a few weeks back and nearly said out loud "I miss you". I'm always biting back small talk, conversation is really scant. Luckily I can still get out on my own quite a lot, so make the most of having coffee with friends!
Thinking of getting a summer house, so when he's further on friends can come to me and we'll still have privacy. I'll have a baby monitor set up so I can hear what he's up to in the house!
The consultant has warned me that there may be a noticeable decline within the year as the pattern of loss suggests AD. Though for now, the anti- Anxiety meds seem to be helping. We've had some awful moments when he's shouted at me or been plain rude to shop staff or friends in public. It makes me cringe. Hoping to get lots of hints and tips for coping from this site, as there doesn't seem much out there for MCI carer support.
Hi Peachez, and welcome to Talking Point.
It's good that you've found us in the early stages, and that you're making plans for what might happen. And if it doesn't, then you've still got a lovely Summer House!My husband was 8 years older than me as well, and similarly, had various worrying symptoms for a couple of years before diagnosis, which was originally Multiple Systems Atrophy, and then Alzheimer's. You'll find loads of help and advice from the lovely people on here, and it helps so much that others know what it's like. xxx
Hi Irismary, oh how I understand and empathise with you. Am in the same situation, yearning for some normal conversation. It's the same 'conversation' day in day out, morning, afternoon and evening. the repetition is so similar to OCD, it's so obsessive, it's maddening. The worst thing is that ever since I told some people of our situation, they have stopped phoning and all we really need sometime is some sort of contact with someone in the real world! I'e been told : if you need anything let us know. I say a simple occasional phone call will do. Does one have to actually beg for a simple mobile message or a phone call?
On the other issue: your ear problem - may I suggest getting in touch with a homeopath. I have found them so very helpful without complications and side effects, and they are so supportive. Something else I find beneficial is my past yoga training. If you can find help there it's awesome.
On the other issue: your ear problem - may I suggest getting in touch with a homeopath. I have found them so very helpful without complications and side effects, and they are so supportive. Something else I find beneficial is my past yoga training. If you can find help there it's awesome.
The worst thing is that ever since I told some people of our situation, they have stopped phoning and all we really need sometime is some sort of contact with someone in the real world! I'e been told : if you need anything let us know. I say a simple occasional phone call will do. Does one have to actually beg for a simple mobile message or a phone call?
Sadly, a lot of us have found this.
That's lovely irismary, and who knows how it may help. It sounds as though it is positive anyway.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi caqqufa
I will look into a homeopath - had thought about reflexology and I do yoga once a week. It is easing a bit at last.
I will look into a homeopath - had thought about reflexology and I do yoga once a week. It is easing a bit at last.
Hi Peachez, and welcome to Talking Point.
My husband was 8 years older than me as well, and similarly, had various worrying symptoms for a couple of years before diagnosis, which was originally Multiple Systems Atrophy, and then Alzheimer's. You'll find loads of help and advice from the lovely people on here, and it helps so much that others know what it's like. xxx
Thank you Scarlett 123, we've had a day in London today and he's so much worse when he's tired. He's been very abrasive tonight. (I had been wondering about MSA too). Thank you for your support. Someone below mentions Yoga, which I stopped a couple of years ago, perhaps time to get back to it... this site is going to be such a help, so glad I found you all.
Peachez, we've all been, or are going through, the same things as yourself, and are here for each other. If you ever want to ask anything, and don't feel able to post it, you're more than welcome to send me a Private Message. xxx
Hello again @irismary and @Scarlett123 Hope you are doing ok. Would love to hear your news.
My OH was told by Cons in March this year that it's atypical PD, "possibly MSA". After this we saw our new GP (Our GP left last October, and we had been in limbo for months) he was asked directly if I was his carer, and I nearly fell off my chair when he said Yes!
Since then a sleep study has been positive for sleep apnoea , and home BP monitoring confirms orthostatic hypotension. MCI as a symptom of MSA is becoming more recognised too.
I still have my doubts, thinking LDB also fits , but will go with it for now. Of course there may be more than one thing going on. I have joined the MSA trust, and am actively looking for carer's support. I'm trying to find things that will be a good fit for us both as this progresses, but he's stubbornly refusing anything that has the word 'dementia' in it - even if it's an exercise class for the less able !
He's much worse when stressed or tired, but he's slowly learning to accept my help .... conversation is woefully lacking now. Abstract ideas and visualisation just confuse him. My willingness to strike out on my own in order to look after myself and have a social life has increased, and I'm hoping to get away for a few days with a friend later in the year. I don't have that garden room yet, but I do have a new kitchen with an armchair next to the new french window at one end, and my daughter bought me a sign to hang on the door that says "do not disturb, Mum relaxing" !
Next step is to get him sleeping in the spare room more often, as the noises he makes keep me awake for hours....
My OH was told by Cons in March this year that it's atypical PD, "possibly MSA". After this we saw our new GP (Our GP left last October, and we had been in limbo for months) he was asked directly if I was his carer, and I nearly fell off my chair when he said Yes!
Since then a sleep study has been positive for sleep apnoea , and home BP monitoring confirms orthostatic hypotension. MCI as a symptom of MSA is becoming more recognised too.
I still have my doubts, thinking LDB also fits , but will go with it for now. Of course there may be more than one thing going on. I have joined the MSA trust, and am actively looking for carer's support. I'm trying to find things that will be a good fit for us both as this progresses, but he's stubbornly refusing anything that has the word 'dementia' in it - even if it's an exercise class for the less able !
He's much worse when stressed or tired, but he's slowly learning to accept my help .... conversation is woefully lacking now. Abstract ideas and visualisation just confuse him. My willingness to strike out on my own in order to look after myself and have a social life has increased, and I'm hoping to get away for a few days with a friend later in the year. I don't have that garden room yet, but I do have a new kitchen with an armchair next to the new french window at one end, and my daughter bought me a sign to hang on the door that says "do not disturb, Mum relaxing" !
Next step is to get him sleeping in the spare room more often, as the noises he makes keep me awake for hours....
