Crunch day tomorrow

[yorkie46]

Hi everyone
Well tomorrow we have our latest visit to the memory clinic. Why is it that term always seems inappropriate to me. Let's face it we all know that memory isn't the only issue we are all worried about. As I've mentioned before we have had three prior visits with no diagnosis made and seen two different people so this will be the third. The last time and this were not doctors but specialist nurses. I really feel this is the last opportunity I have of securing a diagnosis for my husband, there's no chance hell agree to go again unless it is for a follow up appointment. So watch this space!

 

[Pipeth]

Hi everyone
Well tomorrow we have our latest visit to the memory clinic. Why is it that term always seems inappropriate to me. Let's face it we all know that memory isn't the only issue we are all worried about. As I've mentioned before we have had three prior visits with no diagnosis made and seen two different people so this will be the third. The last time and this were not doctors but specialist nurses. I really feel this is the last opportunity I have of securing a diagnosis for my husband, there's no chance hell agree to go again unless it is for a follow up appointment. So watch this space!

Hi Yorkie, hope it goes well for you, my OH is refusing to follow up at the moment, good job we haven't any appointments still!

 

[carolynp]

Hi everyone
Well tomorrow we have our latest visit to the memory clinic. Why is it that term always seems inappropriate to me. Let's face it we all know that memory isn't the only issue we are all worried about. As I've mentioned before we have had three prior visits with no diagnosis made and seen two different people so this will be the third. The last time and this were not doctors but specialist nurses. I really feel this is the last opportunity I have of securing a diagnosis for my husband, there's no chance hell agree to go again unless it is for a follow up appointment. So watch this space!

Hi @yorkie46, Wishing you all the best, I do hope something concrete comes of it. These appointments are so stressful for carers! Worrying about OH's reactions, on tenterhooks about that, and worried about getting - or not getting! - a diagnosis. I remember I could barely breathe when GP finally thought to administer the MMSE to my OH. Then OH was angry with me afterwards - but assumed, erroneously! - that he had convinced GP all was well! Good luck, hope it goes well; please take care of yourself in this anxiety-provoking lead-up and the meeting itself. All the best, Carolyn.

 

[Grannie G]

I hope for a constructive appointment @yorkie46

My husband cancelled quite a few appointments in the early days and the consultant`s secretary told me they were used to it.

 

[yorkie46]

Thank you all for your thoughts.
I mentioned before lunch that my husband would need to record one the programmes he watches this afternoon. He asked why, I said he had an appointment. He replied, have I, I'd forgotten about that! When he realised what it was he said I don't really want to go but I suppose I'd better show up, I'm going to keep it as short as possible. He said I know my memory is awful, I just want to know what they're going to do to improve it.
I can't work out whether he realises that they also diagnose dementia. The first appointment we went to he actually said to the doctor so I haven't got dementia and she said no.
I'm not sure if he actually remembers that or not. He never talks about dementia in a way that suggests it could be anything to do with him, but is that just denial?!!

 

[PJ]

Hi Yorkie
How did your hubby’s appointment go? Can I ask, has he had any brain scans yet & are any of his cognitive tests showing anything?
I do hope you felt supported at the mem clinic. We’ve been very lucky, if you can call it that, as in the lady we see for me has been supportive & understanding all the way.
Take care x

 

[yorkie46]

Hello again
Well the appointment yesterday was a revelation! Even I hadn't realised how much worse my husband had become during the past year. He was OK on the straightforward day, month, year, season, drawings and drawing a clockface. He gave strange answers when asked where we were but after several questions he got there. He struggled with remembering lists of objects, he always has but worse thus time. The areas he struggled most with were logic and sequencing and how much he struggled really surprised me. He also struggled with following instructions - fold a piece of paper in half and put it on the floor. He folded it but gave it back. When asked to say as many words beginning with f as he could in a minutes he got six. Afterwards he told me that he thought the chap would be impressed with the words he'd given because they were all long words. I explained that the idea was to give as many words as possible, he said I know but it shows I'm not stupid! I gave up at this point. I've learned to pick my arguments!
I mentioned that he has difficulty following conversations and the plot on TV programmes. He retorted that he doesn't its because people don't speak clearly, they mumble on TV.
The outcome was that the nurse said he had to discuss it with the consultant tomorrow but he thought they might diagnose MCI which may or may not develop into something else. I don't think my husband understood any of this but agreed to him discussing it and phoning us afterwards.
Afterwards I was still feeling unhappy that I hadn't Ben able to tell him a lot of my concerns so I made an excuse to go out and I phoned the nurse. He was happy to talk to me and I offered to take in written observations if it would be helpful. He said it would. I also made it clear I didn't want my husband to be made awarded that I'd given them more information, he promised it would be kept confidential.
The thing that really surprised me was that if they diagnosed MCI there would be no further contact with the hospital or memory clinic, no ongoing support, just refer back to the GP. I told him that I would be very unhappy if that were the case and that I really need someone to talk to for help and advice at the end of a phone at the very least.
Thus afternoon the nurse phoned to say that the consultant wants my husband to increase his dose of antidepressant to double and she would like to see him in about four weeks. I said that wouldn't go down well because he was wanting to decrease the dose because he thinks they are making him sleepy during the day. The nurse said the shouldn't but the higher dose often has the opposite effect. Predictably when I told my husband h wasn't happy about it, he said he doesn't want a higher dose and doesn't see the need to go back because he's not that bad! Is this just genuinely what he believes or is it a form of denial and if he doesn't acknowledge the problem it doesn't exist?! Who knows.
I'm now feeling terribly guilty for asking for the referral and for giving more information. My daughter tells me I shouldn't, I've done the right thing but it feels like betrayal at the moment.
Does anyone have any thoughts?

 

[yorkie46]

Hello PJ
Yes my husband had a partial MRI about three years ago before our first visit. I say partial because he asked them to stop because he was distressed by it so they never completed it. It showed some small vessel disease. I asked if it would have been better if they'd been able to do more but I was told it would have made no difference. The nurse we just saw yesterday asked me if he would have a scan, didn't know he'd already had one, thought it was unusual that they'd done MRI and not a CT first.

 

[carolynp]

Dear Yorkie this all sounds terribly hard. I just want to comment about your feelings of betrayal, which I have experienced intensely too during the past year, since I first got OH to the GP for a memory test. I then discussed OHs situation with our GP without telling him.
More recently I have forced myself to advise two ex colleagues of my OH behind his back that he has FTD, now in moderate stage. And, worst of all, I have acted to stop the publication of a book of his which would have damaged his outstanding academic reputation. His colleagues agreed and they did the deed. This has been the worst betrayal of all. It is hard even to confess it here in this post.
But I want to say that, since doing these awful things, I have felt such a burden lift from my shoulders. I would NEVER have expected this reaction. People are remarking that I seem lighter and am smiling again.
I now believe that the feeling of betrayal acts against our best interests and the best interests of our PWD. It is a hurdle that has to be overcome; and there is peace and strengthened conviction on the far side. I have more confidence now that I can handle this unenviable situation we are all in. Very best wishes, Carolyn.

 

[yorkie46]

Hi Carolyn
I think feelings of guilt are par for the course for carers of PWD. I now other people who have felt the same. A friend has just moved her husband into care, she really couldn't continue caring at home. I know she is feeling terrible but I hope in time she will feel better.
I still have serious misgivings about what feels like betrayal. My daughter tells me I've done the right thing and I shouldn't feel guilty. I know she's right and the only reason for doing it is to make sure he gets the best possible treatment but after 50 years of marriage its still difficult to accept.
Hopefully if it makes people recognise his difficulties it will all be worthwhile.

 

[carolynp]

Hi Carolyn
I think feelings of guilt are par for the course for carers of PWD. I now other people who have felt the same. A friend has just moved her husband into care, she really couldn't continue caring at home. I know she is feeling terrible but I hope in time she will feel better.
I still have serious misgivings about what feels like betrayal. My daughter tells me I've done the right thing and I shouldn't feel guilty. I know she's right and the only reason for doing it is to make sure he gets the best possible treatment but after 50 years of marriage its still difficult to accept.
Hopefully if it makes people recognise his difficulties it will all be worthwhile.

Hi Yorkie yes we are coming up to 48 years ourselves, and going behind OHs back is something not done in all those decades of shared values, so I do deeply sympathise. Thinking of you. Carolyn.

 

[PJ]

Hi Yorkie, please always try to be kind to yourself. You sound to me to be doing the best you can to support your hubby & no one could ask for more than that.
It’s all such a along hard waiting game when there is no clear diagnosis. Stay strong & believe in yourself xx

 

[yorkie46]

Thanks both for your support and advice. I'll post again with any development. Received his follow up appointment this morning and he didn't seem too annoyed about it. Seeing the GP tomorrow with a shopping list of things I'm concerned about, not least being the fact Hus feet and ankles are becoming quite swollen. He thinks its quite normal in old people, he's 82. He's only old when it suits him!

 

[yorkie46]

Been to GP this morning. Husband agreed to an increase in antidepressants as suggested by memory clinic, husband vague about how much he sleeps during the day, he doesn't realise or admit how much he does. Told me yesterday that most people his age sleep during the afternoon, I said maybe but not morning, afternoon and evening. He told me I exaggerate - if only! This morning he got upset again over absolutely nothing so I hope the increased antidepressants might help. He's been given water tablets to help reduce the swelling in his legs and feet. Doctor also talked him into trying pressure stockings, not sure how hell get on with them. They have to be properly fitted by one of the nurses and he has to have a doplar done first. That's all booked for next week. Doc then wants to see him after next memory clinic appointment. Husband mentioned in conversation with doctor that he has some trouble peeing, doc looked at me and said that's another area we need to look at! That's one of the things he wants to see him about next time! He's obviously going to investigate his prostate, husband will be overjoyed, he says he's sick of medical appointments! Amongst all this he has an eye hospital appointment about his normal tension glaucoma, just another thing he doesn't see the point in! But who's the person who has to coordinate, transport and fit all these things in between the days and times I do the school run for my five year old grandson!! I really need a break but no chance till the summer.

 

[yorkie46]

Well after increased antidepressants for three days I called the nurse at the memory clinic, husband not sleeping as well as he was at night and having nightmares. Nurse is going to speak to consultant tomorrow but told to reduce dosage again. He said we don't want his sleep disturbed, I agreed because as I told him in my husband's mind the tablets are to help him sleep, nothing more!

 

[yorkie46]

Well I'm now at my wits end. I took a phone call this afternoon from the consultant at the memory clinic. Lucky I did because he wanted to speak to me, if my husband had answered I don't know what would have happened. This man has not met my husband but has decided he doesn't have a dementia and he isn't depressed! He may have low mood but his tests were within normal limits. I said I was surprised he said that because he was so much worse than previously but he said it was OK. He asked me a lot about how he was in various different areas, organisational skills, empathy, all the usual things. I told him his organisational skills are poor, he will empathise to a degree if there us anything wrong with me but he forgets I have any problems so this isn't continued. He asked about inappropriate behaviour which there isn't but I told him he is tactless. He asked about his outbursts if anger and asked if he apologised and was remorseful afterwards. I said he is but its like a child I've apologised its OK and I can move on. I don't think he ever thinks about it again. I told him I feel like I'm walking on eggshells all the time. In the end he acknowledged that I had felt let down by them previously and he said he'd like him to have a CT and a Spect scans. Part of me wonder why if he's made his mind up its not a dementia, is it just to make me think they're doing something? When I told my husband about it he asked why they wanted the scans because its just his age. I explained that if he didn't have them before the 9th April we had to cancel the follow up appointment, he asked what I was talking about!
I'm really feeling very low at the moment. He's been saying for the last four days he doesn't feel well, he says its like flu but it can't be otherwise he wouldn't be able to get out of bed. He's been sitting in his chair all wrapped up and with the heating and the gas fire on full blast. He's been sleeping a lot and watching TV.
Earlier today he said he didn't think it was worth going to his eye hospital appointment next Monday. I asked why and was told 'because I'm not well I thought you'd realise that'. I said so you don't think you'll be better by next Monday should I cancel it but he said not yet. Later I asked if he wanted me to cancel an appointment with the nurse at the surgery tomorrow, he said he thought he'd be OK. I said but you told me you didn't think you'd be OK for next Monday. I was told not to get cross with him and I was very unsympathetic!
Since I took my grandson home thus evening I've just kept crying. I feel at the end of my tether. Nothing seems to make sense any more. My daughter wants me to see the doctor but if I do he'll want me to have antidepressants and I don't want them, I'm scared they'd make me too drowsy to drive. In any case that's not the answer, I need someone to understand and listen and not make judgements without even seeing him! Am I being so unreasonable?

 

[PJ]

Well I'm now at my wits end. I took a phone call this afternoon from the consultant at the memory clinic. Lucky I did because he wanted to speak to me, if my husband had answered I don't know what would have happened. This man has not met my husband but has decided he doesn't have a dementia and he isn't depressed! He may have low mood but his tests were within normal limits. I said I was surprised he said that because he was so much worse than previously but he said it was OK. He asked me a lot about how he was in various different areas, organisational skills, empathy, all the usual things. I told him his organisational skills are poor, he will empathise to a degree if there us anything wrong with me but he forgets I have any problems so this isn't continued. He asked about inappropriate behaviour which there isn't but I told him he is tactless. He asked about his outbursts if anger and asked if he apologised and was remorseful afterwards. I said he is but its like a child I've apologised its OK and I can move on. I don't think he ever thinks about it again. I told him I feel like I'm walking on eggshells all the time. In the end he acknowledged that I had felt let down by them previously and he said he'd like him to have a CT and a Spect scans. Part of me wonder why if he's made his mind up its not a dementia, is it just to make me think they're doing something? When I told my husband about it he asked why they wanted the scans because its just his age. I explained that if he didn't have them before the 9th April we had to cancel the follow up appointment, he asked what I was talking about!
I'm really feeling very low at the moment. He's been saying for the last four days he doesn't feel well, he says its like flu but it can't be otherwise he wouldn't be able to get out of bed. He's been sitting in his chair all wrapped up and with the heating and the gas fire on full blast. He's been sleeping a lot and watching TV.
Earlier today he said he didn't think it was worth going to his eye hospital appointment next Monday. I asked why and was told 'because I'm not well I thought you'd realise that'. I said so you don't think you'll be better by next Monday should I cancel it but he said not yet. Later I asked if he wanted me to cancel an appointment with the nurse at the surgery tomorrow, he said he thought he'd be OK. I said but you told me you didn't think you'd be OK for next Monday. I was told not to get cross with him and I was very unsympathetic!
Since I took my grandson home thus evening I've just kept crying. I feel at the end of my tether. Nothing seems to make sense any more. My daughter wants me to see the doctor but if I do he'll want me to have antidepressants and I don't want them, I'm scared they'd make me too drowsy to drive. In any case that's not the answer, I need someone to understand and listen and not make judgements without even seeing him! Am I being so unreasonable?

Hi @yorkie46 the mention of a scan sounds promising. Has your husband had a scan at any point? I’ve been similar to your husband as in my memory & other things have deteriorated over the past few years but nothing much comes from my memory clinic visits/tests.
My husband & me have often come away feeling like we’ve not been listened to. However for the past 6mths we’ve been seeing a different lady & although I’ve had an mri & ct brain scans in the past she sent me for a spect scan which from what we’ve read is one of the best type of scans as it shows the blood flow through the brain. I’m awaiting my results. If your husband has the opportunity to have this scan I would go for it.
I imagine it must be very hard for you as it sounds like your husband is in denial. I do hope you can get some answers soon for both of you. I can’t imagine the memory clinic would suggest a spect scan without good reason. Take care

 

[yorkie46]

Hi PJ
Thanks for your encouraging message. I just hope were not kept waiting too long for the scans and the results. I'm quite certain my husband wouldn't care if they didn't happen and even though I know its wrong part of me feels the same. I still can't belief I've been told by someone who has never set eyes on my husband never mind spoken to him can phone me and tell me he doesn't have a dementia or depression.
One of the questions he asked me was whether my husband shows any empathy towards me. I told him that he does in the immediate but he soon forgets. As an example I had a very painful left wrist yesterday. He suggested I should get a wrist splint and began looking for one in the various catalogues he has. Today he hasn't once asked how it is or even acknowledged that I have an issue with it.

 

[canary]

I need someone to understand and listen and not make judgements without even seeing him!

I understand this only too well. It has been a long hard journey to diagnosis for my OH and along the way I have had many people say to me that everything seems OK. I think the doctor who phoned you up is on the ball, though. Im glad that your OH is being referred for a SPEC scan as this will show area of the brain that are not working properly.

 

[yorkie46]

Hi Canary
I completely understand what you say but what concerns me most is what happens if the scan indicates everything is OK which from past experience I fear will happen. I also still feel extremely unhappy that this man has made a decision about my husband without actually seeing him. I intend trying to speak to my GP about this today.