Help needed please

[Spamar]

Don’t be sorry, pipeth, glad it gave you both a smile! While it was on fire it wasn’t funny, but I thought hanging it in the water butt was! You’ll find lots of bits that are funny. Yes really!
Yorkie, make a bullet point list of everything that is abnormal and get it to consultant before the appt, without O
H knowing. When you do go, sit a little behind him, so you can respond to his answers with a head shake or nod, without him seeing. It’s worked for me and a lot of others here.
The only time I broke that was when he was asked by a doctor who I was. My wife, he said. And her name is...? He used my full name, which no one uses, and I just said, you haven’t used that since the day we got married!! That nearly 33 years earlier! Even the doc laughed!

Have a good nights sleep and a better day tomorrow!

 

[yorkie46]

Hello Spamar, thanks for the suggestions re memory clinic. I'm hoping to get something put together in the next few days to send to the doctor in advance of the appointment. My biggest worry is that he will make it obvious to my husband that I've been in touch with him. I had a GP who told me that he would have to pass on anything I told him to my husband and that stopped me speaking to him. My current GP wanted to speak to my husband about things I told him but respected my request that he doesn't. He did ask to see my husband on his own (I usually go with him) which I agreed to as long as he only spoke to him about his memory. He did but my husband still suspected 'someone' had been talking behind his back and if he found out they had he would be very angry! You can understand my concern. Regarding the seating, I've always found that they give us chairs side by side, it would be difficult to change the arrangement.
My biggest problem at the moment is his sleeping issues. The doctor has given him another different sleeping tablet. Last night, the first with these, he slept fine but he came to tell me that he had stomach pains as soon as he'd taken it. I told him to take some gaviscon and it would go off, it did. Tonight he's been to tell me he's taken it and its not working, he can't get to sleep. Its becoming a nightmare. I don't know what he expects me to do but not sleeping is making him really agitated. I'm going to have to speak to the doctor next week. If he continues like this I'll end up losing my temper I don't understand why he can't just lie there calmly. Sorry for the rant!

 

[yorkie46]

I'm just about at my wits end. Last night he came into my bedroom at 9.50 saying that his sleeping tablet hadn't worked. He took it at 9 and couldn't get to sleep and didn't even feel sleepy. He thought the tablets were placebos (but couldn't remember the word.) During the night I was up to the toilet almost every hour and didn't see his light on until 5.50. When I got up this morning he looked miserable. I asked if he was OK. He said he could hardly speak, his throat was gritty, he had hardly slept. He threw the packet of sleeping tablets down onto the table and said it doesn't say anything about there being placebos in there! I said there won't be placebos in there. He said well why didn't I sleep then, tell me that! He really upset me, I was wondering what was going on in his head. I resisted saying any more but I confess I cried. I honestly thought he was going to be awful all day. By the time he'd had breakfast and a shower he seemed OK. A friend came to visit and he told him about the difficulty with sleeping, he already knew from me, he suggested that not sleeping during the day might help. My husband said he knew that but it was hard not to. The friend lost his wife in December to Alzheimer's so he understands. I keep him up to date by email, something my husband doesn't do! I wasn't going to but I decided in the end to go out this afternoon with my daughter an grandson. She is really annoyed at her fathers behaviour. When I came home he said he didn't want to see a different doctor, I told him it could be a while before he could see ours. I offered to phone early tomorrow to see if I could get a phone call. He agreed with this. Later I thought I'd just check the online booking system to see what was available.. Lo and behold there was one for tomorrow afternoon. I've booked it but he'll have to go on his own as I'm expecting a delivery that I have to be here for. Maybe that's a good thing. I will be seeing doctor on Wednesday and need to try to talk to him about a few things. Hope I get chance. I feel my husband is behaving like a child over this. He wants the sleeping tablets he's used to and he's going to stamp his feet till he gets them. Still feeling very low tonight but hopefully he'll sleep and things will be better tomorrow. When he's like this I'm not sure I can go on a planned break in the summer but I need it. Such a dilemma!

 

[Christine 47]

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

 

[Christine 47]

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

 

[Christine 47]

Hello Pipeth
I read your post with a combination of great interest and empathy because your husband's reactions and behaviour closely resembles my husband's and, like you I exist in an on-going state of confusion. I think the vaccilations you describe may be due to aninety about change so that the enthusiasm is real enough but is overturned by waves of anxiety. I think all you can do is to try your best to ensure you understand your husband's preferences and to steer a steady course of action that promotes his best interests and makes sense to you . Then you need to firmly stick with it and reassure your husband when he "wobbles". This is the approach I try to implement but of course it's not as easily done as said given the strength of the anxiety reactions.
I hope this and other replies have helped you and as you are aware you are not alone. Good luck, Christine

 

[Pipeth]

Hi everyone, I've not been on here for a while, not been to good. A family crisis and dealing with OH situation brought me to my knees, sorry for the self pity. Thank you Christine for your post, my husband has suffered with anxiety for some years now, the memory/language loss in more recent years. I have found the anxiety more difficult to deal with since the memory problem, as we live with groundhog days at times. In some ways it has become easier as he forgets bouts of anxiety, but it leaves me with the fallout, cancellations of plans,holidays, convincing him that something actually happened or was said. I normally can cope, with a little frustration at times, but recent events is causing extra strain. I have been on here since 4 a.m and as in the past it has helped me snap out of feeling really low, just knowing that others are going through similar difficulties and we are not alone is so calming. IT has been good to catch up with others to, some are making progress with diagnosis,which gives me hope, some have given precious information and advice, Thank You once again talking point friends.

 

[Shedrech]

hi @Pipeth
sorry to read that things have been tough for you - but glad that TP is here to offer you some comfort and sympathy

 

[PJ]

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

Hi Pipeth, has your husband had his results yet? I do hope so as it seems such a long time to have waited. They should really only take 2wks max.

 

[Pipeth]

Hi Pipeth, has your husband had his results yet? I do hope so as it seems such a long time to have waited. They should really only take 2wks max.

Hello PJ, thank you for your post. Still no results from memory clinic, I phoned the hospital and found out the result has been available on line since November 27th, the last time I spoke to memory clinic I was told they were still waiting for MRI result and we will get an appointment. I know they must be busy and priorities so I'm trying to be patient. My OH at the moment is saying he doesn't want to go to doctors or hospital, though I think/hope this will change when we get an appointment. I went to the GP myself as I got very low and tired, (another family problem added to the load) to try and push things ahead, she gave me a phone number for counselling, I told her I wouldn't be able to sit and talk on the phone as my husband is my shadow at home. I told her I had support through talking point, people who understand the daily hurdles of living with MCI/dementia. My husband is deteriorating and it is breaking my heart, it is becoming like groundhog day for him more, his language and memory problem is frustrating him. He is happier/hyperactive at the moment after a long period of depression, could be the three bars of chocolate he is eating most days. I am feeling stronger this week so will attempt another push ahead. Take care yourself.

 

[Grahamstown]

Hello PJ, thank you for your post. Still no results from memory clinic, I phoned the hospital and found out the result has been available on line since November 27th, the last time I spoke to memory clinic I was told they were still waiting for MRI result and we will get an appointment. I know they must be busy and priorities so I'm trying to be patient. My OH at the moment is saying he doesn't want to go to doctors or hospital, though I think/hope this will change when we get an appointment. I went to the GP myself as I got very low and tired, (another family problem added to the load) to try and push things ahead, she gave me a phone number for counselling, I told her I wouldn't be able to sit and talk on the phone as my husband is my shadow at home. I told her I had support through talking point, people who understand the daily hurdles of living with MCI/dementia. My husband is deteriorating and it is breaking my heart, it is becoming like groundhog day for him more, his language and memory problem is frustrating him. He is happier/hyperactive at the moment after a long period of depression, could be the three bars of chocolate he is eating most days. I am feeling stronger this week so will attempt another push ahead. Take care yourself.

When another bad thing adds to the daily strain of caring for a PWD it really can be the straw that broke the camels back. I dread getting ill myself because of the consequences. Take heart from the support on here to keep you afloat. Thinking of you and hope you have a bearable day today.

 

[Pipeth]

When another bad thing adds to the daily strain of caring for a PWD it really can be the straw that broke the camels back. I dread getting ill myself because of the consequences. Take heart from the support on here to keep you afloat. Thinking of you and hope you have a bearable day today.

Thank you, certainly helps being on here. Going to try and get some space by joining a yoga class, hoping I will still be flexible enough. Will see how OH copes on his own for an hour and a half.

 

[Pipeth]

Hi all, need to come on ask for opinions, I am confused, tired and angry. My hubby's memory is getting worse and causing him to be more and more anxious. He is sleeping a lot, constantly tired, has developed a problem with walking, his legs seem to give out from under him and he trips and stumbles when going up hill/slopes/uneven ground, he struggles to find words and name objects, wanders around aimlessly ever evening, losing track of time/ misreading the clock, can't sort coins out when shopping, ......... I finally got him to agree to go to the doctors this week, he was upset on waking up Wednesday morning, saying he hadn't slept worrying about going to a family gathering in May, I had mentioned it briefly the day before. He became very distressed and he was physically shaking. I managed to get an appointment, the GP changed his medication to help with anxiety. I mentioned that we were still waiting for a result of an MRI from November, he then said I can give you a copy of that, saying it was not normal and I should discuss it with the memory clinic. I have rang the memory clinic three times since January to try and get an appointment/results. Anyway what I am angry about is the memory clinic doctor rang me today, sounding upset about the fact that the GP had given me a copy, saying she has rang the practice ( speaking to a doctor that we have never seen) and told them she wants Hubby to see a neurologist, that she cannot see alzheimers on the MRI, but she mentioned other conclusions needed a neurologists opinion. She continued to say she was discharging us back to the GP, but would see us in the middle of May to go over the MRI report, no mention of doing another assessment, which was said to be needed because the first assessement was lost. We were sent to the neurologist last time, when the CT scan picked up a cavernoma ( which on the MRI report now states this maybe a calcified haematoma given the multiple other foci of haemosiderin deposition elsewhere.) The MRI report also mentions features consistent with amyloidosis, minimal volume loss in the frontal lobes, there is a moderate to severe degree of small vessel ischaemic change. Does any of this ring any bells with anyone on here.
I am so frustrated that we just seem to be going round in circles over such a long period of time. I have seen on here that an MRI does not always show demetia, that many people struggle to get a diagnosis. If it's not dementia what is it? Feeling better typing this out and rereading has calmed me down.

 

[Pipeth]

Spent the last few hours googling the big words in the MRI report, something I have tried not to do in the past thinking its best to wait for doctors. So I now know the meaning of the words and will have to wait until 17th May to find what they amount to in my Hubby's case. Reread this thread and realised how much my husbands behaviours/personality/difficulties have changed since I first posted. It is helpful to have a thread on here. Apologise to all I have had conversations with in the past few months for being 'absent', I have been reading but felt unable to write anything useful, back on form now. Sending hugs to those that need one and will pick up the threads again.

 

[canary]

Spent the last few hours googling the big words in the MRI report, something I have tried not to do in the past thinking its best to wait for doctors. So I now know the meaning of the words and will have to wait until 17th May to find what they amount to in my Hubby's case. Reread this thread and realised how much my husbands behaviours/personality/difficulties have changed since I first posted. It is helpful to have a thread on here. Apologise to all I have had conversations with in the past few months for being 'absent', I have been reading but felt unable to write anything useful, back on form now. Sending hugs to those that need one and will pick up the threads again.

Before you go to the appointment on the 17th May write a letter to the doctor outlining the changes and your concerns. Make it brief (I usually use bullet points), factual and along the lines of "he used to do...... and now he does......" Give this letter in to the clinic when you book in so that the doctor can read it before he/she sees you. Make sure you mention memory, behaviour and physical changes.

This will mean that you will have a chance to think about things, make sure you have included everything and gets all your thoughts/concerns in order. It also means that you dont have to feel awkward by telling the doctor about this in front of your husband.

I do hope this appointment can move things forward.

 

[Pipeth]

Before you go to the appointment on the 17th May write a letter to the doctor outlining the changes and your concerns. Make it brief (I usually use bullet points), factual and along the lines of "he used to do...... and now he does......" Give this letter in to the clinic when you book in so that the doctor can read it before he/she sees you. Make sure you mention memory, behaviour and physical changes.

This will mean that you will have a chance to think about things, make sure you have included everything and gets all your thoughts/concerns in order. It also means that you dont have to feel awkward by telling the doctor about this in front of your husband.

I do hope this appointment can move things forward.

Thank you canary, I have been writing notes, but your idea of
bullet points is a good one. I certainly need to get my thoughts in order, having trouble keeping up with hubby at the moment, gone from a state of depression to a hyperactive person without a care in the world, if he is not sleeping or having a panic attack. He asked me last night what our sons name is, this morning called the priminister a he, so I asked

 

[Pipeth]

Oops! Posted in error. Hubby couldn't recall Theresa Mays name. Will plod on!

 

[Pipeth]

My OH's has been diagnosed with Vascular Dementia and needs to see a neurologist about further finding of amyoldosis on the MRI. So we now know what we are dealing with. OH is having mobility problems when out walking, stumbling and his legs suddenly giving from under him, his speaking/word finding has deteriorated and he has become very quiet and passive. I think the diagnosis, although he says he doesn't understand has had a further effect. We are however all up together with LPA's, DVLA informed and now looking into finances. Thank you all for your post on this thread and the commuity, I don't know how I would have coped without your knowledge and support.

 

[bobmacwos]

How long does it take to get the result of a MRI ? Am I being unreasonable in expecting a result by now, (MRI in 14th November 2017). I am so angry about the wait as at the last appointment we were told the first assessment was not available so we have basically started again. In the meantime we have become more and more isolated from leading a normal life. Our children are being affected by not getting visits from us, We are missing out on family occasion and seeing our grandchildren, because the open plan living, he can't put up with the noise the children make, we couldn't go to christmas dinner at my daughters because he couldn't handle the company..... sorry I am ranting.... need a break.

 

[bobmacwos]

hi sorry to hear of your plight
i can only say your waiting a very very long time
i seen my doctor locum one but good last november did a memory test as i have depression and anxiety for many years gor referred to memory clinic did more paper tests and ecg and full blood tests and mri scan all in a month got called back to see mory nurse and phsist in jan and told i had vaseclor dementia and alzheimers i.e mixed typ but also a murmur in heart called heart block
this is like in 3 months all tests and results so chase up your people i think
hope this helps if you live in a rural area it can take longer
goog luck