I can understand your fear about the SPEC scan being normal. I can only say that the SPEC scan is much more sensitive than an MRI
Crunch day tomorrow
- Thread starter yorkie46
- Start date
Yes I understand from reading about it that the Spec is more sensitive and shows different areas of the brain. If you have experience could you tell me how it is done and do you have to lie completely flat and his long it takes. Its ridiculous I'm an ex nurse but all these things are new to me!! I've spoken to my GP and he was of the opinion that they wouldn't be doing the scans if they didn't think there is something worth investigating. I hope he's right. I think I've had so many knock backs over this that I tend to be quite pessimistic. They always say that the person who is closet knows them best but then they don't seem to take what I say into account. I sometimes think they think I'm making it all up. I'm feeling a bit better this evening but have felt quite tearful a lot of the day.
Hello Yorkie
I read your post and saw how much you were struggling with not being understood. Oh, the brain is so complicated isn’t it? I just wanted to say I understand a little as my husband shows similar behaviour. He has had 1 major stroke and several silent strokes revealed on MRI and also has small vessel disease. The poor blood flow to the brain obviously affects certain areas of behaviour.
It sounds as if the SPECT scan may help in a diagnosis. Keep your own life going as much as you can. You can’t do more than you’re doing x
Hi Mary's
Thanks for your words of encouragement. It is very difficult to keep positive. I struggle with keeping my life going, I've had to give up so much. He won't go anywhere without me and doesn't like me going out. My lifesaver is my five year old grandson who I take to school twice a week. I collect him from school and bring him here for tea. This is a but of a double edged sword because he wants grandad to do things but grandad doesn't understand a lot of what he wants and is unwilling to do things often. He gets annoyed when our grandson isn't compliant and makes a noise which disturbs his TV programmes! Its frequently like having two five year olds in the house!! To my knowledge my husband has never had a stroke. He had major heart surgery in 2010 when they had huge problems stabilising his oxygen levels and I can clearly trace his difficulties back to that time. He also has high blood pressure and type to diabetes. An MRI about four years ago showed small vessel disease but the scan wasn't completed because he couldn't cope with it. I was told then it didn't make any difference!
I'm trying to be positive but very difficult.
Thanks for your words of encouragement. It is very difficult to keep positive. I struggle with keeping my life going, I've had to give up so much. He won't go anywhere without me and doesn't like me going out. My lifesaver is my five year old grandson who I take to school twice a week. I collect him from school and bring him here for tea. This is a but of a double edged sword because he wants grandad to do things but grandad doesn't understand a lot of what he wants and is unwilling to do things often. He gets annoyed when our grandson isn't compliant and makes a noise which disturbs his TV programmes! Its frequently like having two five year olds in the house!! To my knowledge my husband has never had a stroke. He had major heart surgery in 2010 when they had huge problems stabilising his oxygen levels and I can clearly trace his difficulties back to that time. He also has high blood pressure and type to diabetes. An MRI about four years ago showed small vessel disease but the scan wasn't completed because he couldn't cope with it. I was told then it didn't make any difference!
I'm trying to be positive but very difficult.
Oh Yorkie! Glad you have that little grandson! Noise irritates my husband too. In fact he’s irritable and agitated all day apart from when he meets someone other than me !! This is in complete contrast to the laid back, smiling man I married. It is the illness and that is something that sadly can’t be changed.
It is so difficult when you see the behaviour on a daily basis and nobody else does. I just try and do things that I enjoy and distract my thoughts from trying to change the things I can’t.... but I know how you feel xxx
It is so difficult when you see the behaviour on a daily basis and nobody else does. I just try and do things that I enjoy and distract my thoughts from trying to change the things I can’t.... but I know how you feel xxx
Hi Mary's
Thanks for your thoughts and for describing my husband so well!! He seems to be just the same as yours, fine with other people but I get the grumpy one!!
Unfortunately he's now blown it with our grandson. When I brought him home from school yesterday grandad moaned at him the whole time. Alfie tried to get him involved in what we were doing, they're taking about jungles at school and he wanted to play jungles. I said we'd make some jungle juice, just a mixture of different squashes we had and some water. Alfie loved it and wanted grandad to have some but grandad was having none of it and just frowned and turned his nose up at the idea! At tea time grandad complained constantly about the way he was eating. I know its not good but he was trying to use his knife and fork and he was eating. In the end he told him h was eating like a pig which he knows is red rag to a bull, this started an argument at which point I lost it big time. I know it was the wrong thing to do but when you've had a day of him moping around and doing nothing but sleeping (other than when the cleaner was here and then he was fine) it's the last thing you need. I told him I couldn't stand this any longer and I was going to have to take Alfie to their house after school and give him his tea there. My husband then went off and started crying, he always gets the blame, I'd really upset him and he's not well! This is exactly what he always does and he always either says he's not well or he's an old man! Its begun to wear a bit thin. I told him he might be upset but I'm not exactly happy! I then couldn't finish my meal, my husband had left half if his - again - because he'd had enough. He'd earlier complained it was cold! I get sick of him moaning about the food I make. When Alfie had finished I took him home and went to have a coffee and calm down. When I came back I told him that I was arranging that I would take Alfie home after school and give him tea and he said 'good'! So he won't see much of him any more but he doesn't seem bothered, either that or he hasn't realised.
I've just explained all this to my sister and she said its so like our mum - she has vascular dementia! She's 93 and in a care home. I only see her occasionally because she's in York.
Well well see what the next few days ho!d. I'm going out for a couple of hours with my daughter and grandson this afternoon. Oh I forgot, when I took him home Alfie insisted I take one of his mini easter eggs for grandad!
Thanks for your thoughts and for describing my husband so well!! He seems to be just the same as yours, fine with other people but I get the grumpy one!!
Unfortunately he's now blown it with our grandson. When I brought him home from school yesterday grandad moaned at him the whole time. Alfie tried to get him involved in what we were doing, they're taking about jungles at school and he wanted to play jungles. I said we'd make some jungle juice, just a mixture of different squashes we had and some water. Alfie loved it and wanted grandad to have some but grandad was having none of it and just frowned and turned his nose up at the idea! At tea time grandad complained constantly about the way he was eating. I know its not good but he was trying to use his knife and fork and he was eating. In the end he told him h was eating like a pig which he knows is red rag to a bull, this started an argument at which point I lost it big time. I know it was the wrong thing to do but when you've had a day of him moping around and doing nothing but sleeping (other than when the cleaner was here and then he was fine) it's the last thing you need. I told him I couldn't stand this any longer and I was going to have to take Alfie to their house after school and give him his tea there. My husband then went off and started crying, he always gets the blame, I'd really upset him and he's not well! This is exactly what he always does and he always either says he's not well or he's an old man! Its begun to wear a bit thin. I told him he might be upset but I'm not exactly happy! I then couldn't finish my meal, my husband had left half if his - again - because he'd had enough. He'd earlier complained it was cold! I get sick of him moaning about the food I make. When Alfie had finished I took him home and went to have a coffee and calm down. When I came back I told him that I was arranging that I would take Alfie home after school and give him tea and he said 'good'! So he won't see much of him any more but he doesn't seem bothered, either that or he hasn't realised.
I've just explained all this to my sister and she said its so like our mum - she has vascular dementia! She's 93 and in a care home. I only see her occasionally because she's in York.
Well well see what the next few days ho!d. I'm going out for a couple of hours with my daughter and grandson this afternoon. Oh I forgot, when I took him home Alfie insisted I take one of his mini easter eggs for grandad!
Alfie sounds an absolute joy Yorkie. I love hearing about him. What a sweet child. The jungle juice was such a clever idea of yours. I think because of his illness your OH, busily if helplessly regressing, is jealous of the attention Alfie gets from you. Hence the impossible behaviour. Such an awful shame you cannot both enjoy your grandson together.
But that mustn’t affect your joy in this light of your life and I think your new plan of going to his house for tea will leave you and Alfie free to relish each other’s company to the full.
The beauty of the Easter egg gift from Alfie to his grandfather is that it shows your lovely grandson seeing straight past the illness to the person, as we carers are always advised to do!
I’m in a roughish patch. Visiting son and his partner in Sydney. We are staying in an apartment near their house. OH with FTD is wonderful with them, lively, interested, energised. Not with me! And needing so much extra help and care in an unfamiliar place that I am tired out.
The benefit is that our son gets to see his father as the best he can be now. The disadvantage is that I feel OH is standing on a platform created by my backbreaking efforts so he can be at his best! Oh dear. Memo to self: Look on bright side! Enjoy son and partner! Grit teeth and try not to get exhausted.
Over and out.
But that mustn’t affect your joy in this light of your life and I think your new plan of going to his house for tea will leave you and Alfie free to relish each other’s company to the full.
The beauty of the Easter egg gift from Alfie to his grandfather is that it shows your lovely grandson seeing straight past the illness to the person, as we carers are always advised to do!
I’m in a roughish patch. Visiting son and his partner in Sydney. We are staying in an apartment near their house. OH with FTD is wonderful with them, lively, interested, energised. Not with me! And needing so much extra help and care in an unfamiliar place that I am tired out.
The benefit is that our son gets to see his father as the best he can be now. The disadvantage is that I feel OH is standing on a platform created by my backbreaking efforts so he can be at his best! Oh dear. Memo to self: Look on bright side! Enjoy son and partner! Grit teeth and try not to get exhausted.
Over and out.
Don't get me wrong Alfie is no angel but he's a five year old boy!! You could be right that my husbands problem is jealousy. His behaviour would certainly suggest that. He is also typically child-like in that he is very self centred. Whenever he has his outbursts he only thinks about how he feels. He will say things like I'm very upset, I'm not well, I'm an old man, all of which are probably true but I'm upset too!
My biggest difficulty remains the fact that he doesn't have a diagnosis and I really don't feel confident that he will have any time soon! Unless someone actually tells him that there is something wrong with him he won't even think about it.
We do have days like today when he is much better and I can find something to motivate him. He has been wanting a new small bird table to replace one that disintegrated some time ago. I found one in a local discount store so I took him to buy it. At the same time we bought some compost for Alfie's troughs ready for his seeds. When we got home my husband drilled the holes in the troughs for drainage, dug some soil from the compost heap and broke some crocks. I had to draw the line at him actually filling the troughs because I want Alfie to do that. My husband didn't think it a good idea because he'll make a mess!! I persuaded him it would be OK.
Unfortunately my husband had a rather Victorian upbringing and it seems that as he now remembers more about the distant past he has begun to think that is how he should behave and how he should b disciplined. As my daughter put it he's becoming like his mother and father! I've also noticed things that have made me think 'that's what your dad would have said'! Another unfortunate fact is that he was adopted so doesn't have any family either natural or adoptive.
On days like today I feel so much better!
A question. When dealing with someone with memory problems should I try to get him to remember or is it best to accept he probably can't and speak for him?
This morning we were speaking to a neighbour who had borrowed our pressure washer which had subsequently ceased to work, he had been trying to repair it. My husband had kept saying that he would ask about it when he saw him but kept forgetting. This morning I said in front of the neighbour 'what did you want to ask'. My husband became very annoyed with me and said don't ask me that you know I can't remember you ask him!! I realised I'd probably embarrassed him! I probably shouldn't have done it but it has served to prove to me that even with cues he doesn't remember!!
My biggest difficulty remains the fact that he doesn't have a diagnosis and I really don't feel confident that he will have any time soon! Unless someone actually tells him that there is something wrong with him he won't even think about it.
We do have days like today when he is much better and I can find something to motivate him. He has been wanting a new small bird table to replace one that disintegrated some time ago. I found one in a local discount store so I took him to buy it. At the same time we bought some compost for Alfie's troughs ready for his seeds. When we got home my husband drilled the holes in the troughs for drainage, dug some soil from the compost heap and broke some crocks. I had to draw the line at him actually filling the troughs because I want Alfie to do that. My husband didn't think it a good idea because he'll make a mess!! I persuaded him it would be OK.
Unfortunately my husband had a rather Victorian upbringing and it seems that as he now remembers more about the distant past he has begun to think that is how he should behave and how he should b disciplined. As my daughter put it he's becoming like his mother and father! I've also noticed things that have made me think 'that's what your dad would have said'! Another unfortunate fact is that he was adopted so doesn't have any family either natural or adoptive.
On days like today I feel so much better!
A question. When dealing with someone with memory problems should I try to get him to remember or is it best to accept he probably can't and speak for him?
This morning we were speaking to a neighbour who had borrowed our pressure washer which had subsequently ceased to work, he had been trying to repair it. My husband had kept saying that he would ask about it when he saw him but kept forgetting. This morning I said in front of the neighbour 'what did you want to ask'. My husband became very annoyed with me and said don't ask me that you know I can't remember you ask him!! I realised I'd probably embarrassed him! I probably shouldn't have done it but it has served to prove to me that even with cues he doesn't remember!!
Hi @yorkie46 not sure if I’ve told you but I’d had 2 brain scans over the 2 yrs I’ve been under the memory clinic & nothing showed on either one. But the SPECT scan is very different & shows blood flow in the brain.
The scan involves being fitted with a canular, lie in quiet dark room for 10 mins, inject with radioactive fluid, then the scan takes approx 45mins then poss straight into a CT scan for approx 5 mins. Results Should take max 2wks
Thanks PJ
I don't know where you had your scans but it seems to be different here. We've got the appointment for the CT scan but when I phoned to find out if he could have the other one at the same time I was told it was arranged by a different department! Sounds like typical left and tight hand syndrome to me!
I have to phone the secretary tomorrow to cancel the planned follow up appointment as it was before the scans so I'm going to check with her that a request has been sent for both. You can't take anything on trust!
Meanwhile we have eye hospital appointment tomorrow morning, I don't know what wed find to do without all these appointments!!
I don't know where you had your scans but it seems to be different here. We've got the appointment for the CT scan but when I phoned to find out if he could have the other one at the same time I was told it was arranged by a different department! Sounds like typical left and tight hand syndrome to me!
I have to phone the secretary tomorrow to cancel the planned follow up appointment as it was before the scans so I'm going to check with her that a request has been sent for both. You can't take anything on trust!
Meanwhile we have eye hospital appointment tomorrow morning, I don't know what wed find to do without all these appointments!!
Well I'm feeling quite despondent, I phoned regarding the Spect scan and been told we could have to wait 4-6 weeks! I've requested that they let me know if they get a cancellation.
My husband had an eye hospital appointment this morning. Before we went he said he didn't think they'd want to keep seeing him because they don't do anything. I said I didn't think they would do that and asked him if he knew why he has to go. He said he didn't! I explained that it is to monitor his normal tension glaucoma and they need to make sure it isn't getting worse. He said oh, I thought it was just a general check! In the event his visual field test appears to be worse but the consultant thinks this is caused by his drooping eyelids because it seems to be the top of his visual field that is most affected. He wants to see him again in four months when they I'll do the test with his lids taped up, he'll love that, I don't think he heard that bit! On the way home he said he knew his vision was worse. I explained that the doctor thought the problem might be caused by his drooping eyelids. He said well there's nothing I can do about that, I said you might have to have them stitched back. He said I'm not going down that route, I said if he didn't it might affect whether he can drive, he said well I won't be driving much longer anyway!! I really wish he didn't want to drive now!!!
My husband had an eye hospital appointment this morning. Before we went he said he didn't think they'd want to keep seeing him because they don't do anything. I said I didn't think they would do that and asked him if he knew why he has to go. He said he didn't! I explained that it is to monitor his normal tension glaucoma and they need to make sure it isn't getting worse. He said oh, I thought it was just a general check! In the event his visual field test appears to be worse but the consultant thinks this is caused by his drooping eyelids because it seems to be the top of his visual field that is most affected. He wants to see him again in four months when they I'll do the test with his lids taped up, he'll love that, I don't think he heard that bit! On the way home he said he knew his vision was worse. I explained that the doctor thought the problem might be caused by his drooping eyelids. He said well there's nothing I can do about that, I said you might have to have them stitched back. He said I'm not going down that route, I said if he didn't it might affect whether he can drive, he said well I won't be driving much longer anyway!! I really wish he didn't want to drive now!!!
Regarding the issue of whether to try to get the PWD to remember things. The neighbour we were speaking to when my husband snapped at me caught me on my own today. He asked me if my husband was OK because he'd been very surprised at the way he spoke to me. He'd also spoken to him twice on Monday when my husband was getting something out of the car but my husband hadn't responded. I did say he may not have heard him which is true though when he last had a hearing test he was told it was OK! I explained my husbands difficulties to the neighbour and said I think he has dementia but the doctors won't diagnose. The neighbour said he did wonder if it was. He said he can't believe they don't diagnose him! So it isn't me other people are noticing now.
