Fraught consultaton

[rhubarbtree]

Following many years of scans and memory tests my husband was prescribed Donepezil this week. I describe the consultation as fraught because my husband was not really following the conversation and I was totally in denial. He had been diagnosed with MCI last year but I asked if Donepezil meant dementia. This was confirmed, but Alzheimer's was not mentioned but shrinkage of the hippocampus was, so I presume he does have Alzheimer's. I think my reaction affected how the consultant dealt with us. We are to see her again in 3 months so I will take a list of questions next time.

What I am finding most difficult is dealing with someone else's illness. It felt awful talking about my husband with the doctor while he was sitting there.

At the moment I am far from resigned to the situation and keep trying to think of ways to halt the decline. Hopefully, the medication will help. We have started an activity diary with a frontispiece setting out all the activities that can help. (Glass of red wine a day is favourite). My husband has shown great interest in this and has kept the diary up for three days (this is quite something as he dislikes writing).

Seems very strange to be facing a dark future when everything seem so normal.

 

[chick1962]

Hello Rhubarbtree it is such a shock when first diagnosed. I remember it all too well bless. There's lots of advice, support and help available on here so plz don't ever despair ! Just try and take each day as it comes and make the best out of it ! Diaries are a positive thing . I am sure more TPers will come along and say hello . Take care Heike x


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[Ann Mac]

Hi Rhubarbtree, and welcome

So sorry that your OH has had this diagnosis - its such a frightening time, I know.

I just wanted to offer a suggestion about tryng to discus things with consultants/doctors/professionals, when the person with dementia is there too - my mil, who I care for, often is in denial about the various aspects of her illness, and can get angry and upset if I provide info that she doesn't believe is true while she is sitting there. There's also an issue with her providing the wrong info when asked, especially about her medication - she sounds completely sensible and plausible, and many a time I've had no choice but to interupt and tell a doctor that actually, she does have diabetes and yes, she does take meds for it. And anyway, its not nice, having to sit there and discus someone when they are present - it feels so rude

I get round it by writing/typing up all relevant info into a letter in advance, I list meds, explain clearly why I am doing this, explain that Mil can get distressed, and use this letter to pass on any info that I think the consultant/doctor may need to know, or that we need help with - I hand it in at reception, and try to make sure that it gets to whoever we are seeing before we go in for the appointment. It helps a lot, cuts down on Mils distress and it saves the wrong information being recorded

I hope this helps a little at least x

 

[Witzend]

I must say I think it should be standard in dementia for the relative or carer to be able see any professional separately. They go on about 'dignity' in dementia, but it is humiliating and very likely anger-making if the person has to be contradicted for the sake of veracity, or is made to feel embarrassed because they are unable to answer questions.

Not everybody will want or need a separate appointment, but I feel strongly that it should always be offered. Even when she was quite bad my mother absolutely hated people talking about her in her presence, and I couldn't blame her. It is rude and completely lacks consideration for the person's feelings.

 

[Ann Mac]

I must say I think it should be standard in dementia for the relative or carer to be able see any professional separately. They go on about 'dignity' in dementia, but it is humiliating and very likely anger-making if the person has to be contradicted for the sake of veracity, or is made to feel embarrassed because they are unable to answer questions.

Not everybody will want or need a separate appointment, but I feel strongly that it should always be offered. Even when she was quite bad my mother absolutely hated people talking about her in her presence, and I couldn't blame her. It is rude and completely lacks consideration for the person's feelings.

Agree, 100%! At the memory clinic, they always worked it so that we got 15 minutes with one consultant, so we could talk, whilst Mil went off to do the tests or whatever - so much easier, and nicer for her. I just wish it was standard across the board, not only for dementia clinics, but any other medical appointment too - I've had to take Mil to a continence clinic recently, and as she has no recollection of the issues she has in this area and will strenuously deny that she has any problem at all, its incredibly difficult - and so embarrassing and upsetting for her, as well as making her angry with me

 

[Spamar]

The last meeting OH had, I wanted to add a few things and ask a few questions of my own. The consultant eventually said that he would phone me in the afternoon. He didn't. First mistake! Now see where we are! I should gave written, but he had a temporary blip, when he was much better and other things got in the way. Second mistake.

 

[Lawson58]

Agree with Annmac totally.

When my OH has an appointment with the geriatrician, his assistant sees us together first and administers the usual memory tests while I am also completing a set of questions giving my observations. Then the doctor sees me on my own before getting my husband in for a chat. I have ample time to express my concerns and obviously the doctor understands how AD patients often are in denial or perhaps can lack the insight into their condition that carers have.

I am happy that I am being heard and that I have the opportunity to address any issues or concerns that I have.

 

[rhubarbtree]

Fraught consultation

Thank you AnnMac Witzend Spamar and Lawson58. Just to receive these messages understanding my feelings has lifted me considerably.

I will certainly take AnnMac's suggestion of handing my notes over to the consultant. To be fair when she saw how upset/annoyed I was getting she did say she would see me separately, but to me that would be just as embarrassing for my OH, knowing I was talking about him.

Went out last night with our group of friends and took the opportunity to tell his best friends. He had told them about the meeting but only that he could still drive. This really is the only thing he worries about. OH had a great evening and I was close to tears on many occasions.

Have completed a cold, sunny walk and booked tickets for a live National Theatre production at local cinema in the week. Trying to keep up the various activities plan.

Agree with Annmac totally.

When my OH has an appointment with the geriatrician, his assistant sees us together first and administers the usual memory tests while I am also completing a set of questions giving my observations. Then the doctor sees me on my own before getting my husband in for a chat. I have ample time to express my concerns and obviously the doctor understands how AD patients often are in denial or perhaps can lack the insight into their condition that carers have.

I am happy that I am being heard and that I have the opportunity to address any issues or concerns that I have.

 

[Trisha4]

Thank you AnnMac Witzend Spamar and Lawson58. Just to receive these messages understanding my feelings has lifted me considerably.

I will certainly take AnnMac's suggestion of handing my notes over to the consultant. To be fair when she saw how upset/annoyed I was getting she did say she would see me separately, but to me that would be just as embarrassing for my OH, knowing I was talking about him.

Went out last night with our group of friends and took the opportunity to tell his best friends. He had told them about the meeting but only that he could still drive. This really is the only thing he worries about. OH had a great evening and I was close to tears on many occasions.

Have completed a cold, sunny walk and booked tickets for a live National Theatre production at local cinema in the week. Trying to keep up the various activities plan.

Hi there. My husband was diagnosed a couple of years ago. We are in our 60s. We made the decision to be open about Alzheimers so we told friends and family. We even tell people we meet and chat to as it explains my husband's difficulty with words. He started in an uncommon way apparently. He has aphasia which means he can't find the words he wants to use, he can't use numbers ( and he was a research engineer) and he can't write a word. He is also becoming more confused as time goes on.

Having said all that, we still enjoy going out together, seeing friends and going on holiday. We spent 5 weeks in France in our motorhome in the summer and we are going to China in April.

I would recommend that you get power of attorney sorted out. We did it in the early days. Also you can apply for attendance allowance for him. It is not means tested and is his entitlement. I went on a CrISP course run by the Alzheimer's society for carers of people with dementia. I found that extremely useful.

TP is wonderful as people on here understand things you face and have suggestions, ideas and advice. I find it a huge help that we are not alone on our journey.


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[snowygirl]

I totally agree. On Thursday my sister and I attended an appointment with my mum as we were asked to come in by phone. Unfortunately it wasn't mums GP(??)and he didn't know mum so he asked lots of questions over her and I could see mum getting moody at what was going on. When we left she wanted to stay behind which of course we allowed her to do thinking she had something personal to address only to find out later that she told my brother that she stayed behind to apologise for us!!!! How frustrating. This episode put mum in an awful mood all afternoon and she was particulary mean after that but then 4 hours later said what a lovely day she had had!! I really do think we should be asked in beforehand but also think that I will take on advice and pass a letter through the reception.. thanks Ann Mac!!

 

[rhubarbtree]

Hi there. My husband was diagnosed a couple of years ago. We are in our 60s. We made the decision to be open about Alzheimers so we told friends and family. We even tell people we meet and chat to as it explains my husband's difficulty with words. He started in an uncommon way apparently. He has aphasia which means he can't find the words he wants to use, he can't use numbers ( and he was a research engineer) and he can't write a word. He is also becoming more confused as time goes on.

Having said all that, we still enjoy going out together, seeing friends and going on holiday. We spent 5 weeks in France in our motorhome in the summer and we are going to China in April.

I would recommend that you get power of attorney sorted out. We did it in the early days. Also you can apply for attendance allowance for him. It is not means tested and is his entitlement. I went on a CrISP course run by the Alzheimer's society for carers of people with dementia. I found that extremely useful.

TP is wonderful as people on here understand things you face and have suggestions, ideas and advice. I find it a huge help that we are not alone on our journey.


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Thanks for your reply. Have been researching the power of attorney and will get the form filled in before seeing consultant next. We have a couple of holidays planned for this year - both with other people but I think I would like to book something just us. Feel we can enjoy ourselves more if others aren't looking for signs. We are always friendly with strangers but can move on when we want. China - I am impressed. Speak again Trisha. Bye

 

[babe]

Hi every one I am new on here my husband has been told he is in the early stages of Alzheimer's this was about 6 months ago he is on tablets which seems to be working but not all the time his memory seems a bit better but he has these what I call blow ups and can be quite violent with them he shouts and goes red in the face and clenches his fist and tells me to get out of the room not to speak to him and he will not speak to me this can go on for a week , my problem is we have no friends at all the close ones we had have all died before us and we have no family at all left , so I have no one to turn to when I need some one to talk to I am suffering from depression and also have a heart problem and find my self continually crying , I am 76yrs old hubby is 78yrs I feel so alone at times apart from my dog and 2 cats .

 

[sinkhole]

There seems to be no consistency from what I'm reading and my own experience.

I was quite surprised when I accompanied my relative to her assessment at the memory clinic. There was very little fact checking going on during the consultation and I didn't feel it was appropriate to interrupt and make corrections during the questioning.

Her GP retired just at the point where we needed his involvement and the replacement was off sick when we went to get a referral to the memory clinic which meant we saw a stand-in who just didn't have any interest in following up.

I just don't get the impression there's a plan or anyone is taking responsibility to ensure the right things happen when they should.

 

[marionq]

Hi every one I am new on here my husband has been told he is in the early stages of Alzheimer's this was about 6 months ago he is on tablets which seems to be working but not all the time his memory seems a bit better but he has these what I call blow ups and can be quite violent with them he shouts and goes red in the face and clenches his fist and tells me to get out of the room not to speak to him and he will not speak to me this can go on for a week , my problem is we have no friends at all the close ones we had have all died before us and we have no family at all left , so I have no one to turn to when I need some one to talk to I am suffering from depression and also have a heart problem and find my self continually crying , I am 76yrs old hubby is 78yrs I feel so alone at times apart from my dog and 2 cats .

These feelings are not uncommon I am sorry to say. So often friends and family have died or become ill by the time you yourself are older and in need of their support. You really need to talk with social services to see if you could get some help eg volunteers who would accompany your husband while you have a break or make use of the Alz Soc groups where you meet other people together. I would have been very depressed this last year without the groups I go to with my husband. Singing groups are great fun, memory cafes can be good for chatting, football memories good for men, bowling groups, film groups etc.

Make some enquiries by phoning Alz Soc or in Scotland phone Als Scotland

 

[tralen]

Following many hours of reading so many posts I've decided to register today. Hello Rhubarbtree and everyone!! I can relate to many of the comments I've read so far. My Husband was diagnosed with MCI (mild cognitive impairment) 3 years ago. He has had a number of assessments in that time, the last being a month ago when we were told there has been no change from 2 years ago. I know there are changes, I live with him. Now we are waiting for the results of an MRI scan, the last one 3 years ago did show shrinkage.
I agree that it is extremely difficult to talk to a doctor about issues concerning the person with problems in their presence. At my request I have had opportunities to speak privately without my husbands knowledge but I don't feel my information is taken on board.
A psychologist did suggest he kept a daily diary but my husband showed no interest and eventually gave up. I can't get him interested in anything. I hope your husband's enthusiasm for his activity diary continues. Good luck