Finally a diagnosis

[kitkat67]

A while ago I posted on the forums about concerns for my mum's memory. Over the past months she has gone through the memory clinics, CT scan, and now a final diagnosis that she has mild alzheimers. It all seems a little surreal as on a day to day basis she seems generally the same as she was before, albeit with the memory problems, but I guess with the scan there can be no doubt about the diagnosis.
Obviously though, now we have the diagnosis, I am keen to know what needs to be done, if anything, at this stage to support her and my dad.
I tried to have a conversation with them both at the weekend, as, although it is easier for me to just discuss things with dad, I don't want mum to think I am talking about her behind her back.
The conversation didn't go as well as I hoped. Mum insisted that the scan showed deterioration but that it was only the same as anyone else her age would probably have, nothing unusual. I thought though that the brain showed very differently for people with alzheimers. Am I correct? Otherwise how have they decided it is alzheimers?
Her reaction concerned me as it made me wonder whether she really understands the situation or is she just trying to ignore the reality? She really got quite angry at the suggestion that it was more than just an age issue.
She also insisted that she is not about to start putting arrangements in place, like wills (they have a will).
The consultant has put her on medication although, I am not sure exactly what it is (Mum said it was just more vitamins), Dad confirmed it was for the Alzheimers. She likes to have a few glasses of wine most days. Should she be reducing her drinking?
I'm so worried now about what the future may bring, particularly as my dad is only in the position to support her up to a certain point (he is in a wheelchair). I don't want to upset her (or my dad) by pushing anything on them, but having read various posts on this forum I know that there are certain issues that should be dealt with as soon as possible, POA in particular.
Do you think it is acceptable to just discuss things with Dad and then let him have the conversations with my mum? I don't want him to think that I'm just leaving it up to him but at the same time I think my involvement may just create anger and resentment with mum. But then what do I do if he doesn't manage to persuade her? My husband says I can only just try and guide them what to do and if they choose to ignore me then that is their decision. But this is such a difficult thing to do with a view that sometime in the future things could be so much more difficult.
I would be really grateful for any opinions of how people have dealt with these early stages without causing huge upset.
Thank you in advance

 

[canary]

One of the more difficult symptoms of dementia is anosognosia - this is when the person is unable to understand that they have something wrong ith them. It is not denial - they are truly not able to comprehend that they have dementia, hence her saying that the scan only showed things due to old age and insisting that her medication was just vitamins. Unfortunately she truly believes this and you will not be able to convince her this it is otherwise.

Because of this it will be totally impossible to have an open and honest discussion with her about her dementia. If you want to discuss things, then Im afraid that it will have to be just with your dad and you may have to use stealth to get her to do things that are necessary.

 

[karaokePete]

Your mum’s reaction is quite common and, as has been said, can be down to the dementia itself.

Setting affairs in order can be tricky in these circumstances as things like POA are granted rather than taken and the person has to have capacity and be free of duress. One rouse that has helped with some people is that both parents grant POA and make Wills etc., at the same time, as a ‘good idea’, so that there isn’t any pressure felt.

 

[canary]

One rouse that has helped with some people is that both parents grant POA and make Wills etc., at the same time, as a ‘good idea’, so that there isn’t any pressure felt.

That is very true. OH and I both did POA at the same time and dementia was never mentioned, but If I hadnt done mine too I doubt that OH would have agreed.

 

[karaokePete]

BTW, if you haven’t seen them already you may find the publications useful and you can find them with this link

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

You can also do a post code check for local support services with this link

https://www.alzheimers.org.uk/find-support-near-you

 

[candlelight]

Hi, I’m at this point with my Mum too, sympathies to you and your family. Mum, also doesn’t really understand and thinks she’s taking a new pill for something else. My Dad is very capable at the moment and looks after all their finances etc. But I’m presuming we need to have 2 POA in place for them both?

 

[canary]

Hi, I’m at this point with my Mum too, sympathies to you and your family. Mum, also doesn’t really understand and thinks she’s taking a new pill for something else. My Dad is very capable at the moment and looks after all their finances etc. But I’m presuming we need to have 2 POA in place for them both?

Hello @candlelight and welcome to Talking Point.
I think it is always a good idea to have POA sorted - both Finance and Health&Welfare. They can be done, registered and put away until they are needed. Both OH and I have had ours done and I am hoping its going to be many years before anyone needs mine (I dont have dementia) and I think that OH has forgotten that he has done his, so once I need it there will be no problems.

 

[karaokePete]

Hi, I’m at this point with my Mum too, sympathies to you and your family. Mum, also doesn’t really understand and thinks she’s taking a new pill for something else. My Dad is very capable at the moment and looks after all their finances etc. But I’m presuming we need to have 2 POA in place for them both?

Hello and welcome to posting on the forum.

You may find the AS Booklet that can be reached with this link useful https://www.alzheimers.org.uk/sites/default/files/2018-07/AS_NEW_The dementia guide_update 3_WEB.pdf

 

[kitkat67]

Thank you all. @candlelight, sorry to hear you are in a similar situation. It's so difficult isn't it. At the moment it is consuming most of my thoughts, wanting to understand what the future will bring. I like to know facts, have an idea of how things will change and when, but with this illness I guess I have to accept that's just not possible, and change my way of thinking about things, and just take each day as it comes. I just hate the thought that I will lose my mum month by month, or is it not that obvious?

I have printed off some of the factsheets and also ordered a copy of the dementia guide for my dad. I'm going to let him try and bring things up with mum at an appropriate time. She has been offered a support group so hopefully they will also discuss POA with her as well. Maybe it will be easier if the advice comes from a professional.

 

[Rubynoodles]

I’m in virtually the same stage as you are atm. Mum was diagnosed last Monday and although it hasn’t come as a huge shock as her memory hasn’t been right for sometime, we feel lost. It’s all I think about, constantly googling to see if /when she will start to really deteriorate etc! It seems to be my dad who is in some kind of denial. I keep mentioning sorting out a POA which he says yes to then changes his mind, I’ve found local support groups but he says mum’s not that bad atm etc. Mum has been described Galantamine which dad says the consultant explained it will hold back the dementia for up to 10 years but I’m sure he heard that wrong or is in denial. Mum on the other hand is very down this week, she keeps overthinking everything. I’m feeling so lost, sad and worried for the future. I feel like I want to take over and sort everything thing out for them, which I know I mustn’t do. It’s so hard isn’t it? The uncertainty, just not knowing where to go next? Do I make a thing about it or coast along as normal? Thank goodness for this forum, makes me feel less alone.

 

[john51]

When I got my diagnosis, over 4 years ago, the consultant spoke to us at some length about the importance and value of giving POA whilst I had capacity. We spoke about it at length and I willingly gave POA. I've often wondered however when I do lose capacity how wiling my wife, son and daughter are going to be to inform me that they are putting the 2 POA into effect. Do they think I will be so gaga that I won't care what is happening? This seems a bit unlikely

 

[CardiffGirlInEssex]

We are in a similar situation to you. My mum appears to understand and accept her diagnosis but at the same time will tell me that she doesn’t forget anything completely, just after she’s asked me the same question five times in less than 20 minutes! Attempts to explain that get responses like “I wasn’t really paying attention” or “ I probably thought you needed reminding.” Very difficult. I live 200 miles away from my parents and have no siblings, I want to give my dad more support but am not able to. We have contacted Admiral Nurses, it is worth looking into that because they support the person or people caring for the PWD. We are waiting for an initial assessment and I will post more once that has happened, but they have been very helpful even just on the phone and with providing information leaflets so I’d suggest you contact them too. I can’t add a link to their website as I haven’t made enough posts here yet, but if you google Admiral Nurses it’s easy to find.

 

[kitkat67]

It is comforting to know that others are experiencing the same issues. Thank you @CardiffGirlInEssex. I hadn't thought of Admiral Nurses. For some reason today I feel so sad about everything. 2 months on and dad still hasn't sorted POA and whenever I try and ask questions, he dismisses them as if they are not important. Seems that him and mum want to just deal with it themselves, but I want to help and support them. Particularly as dad seems frailer as weeks go on - nothing specific - just age I guess and the worry of caring for mum.

 

[AlisonE]

I am in a similar position with my Mum. She refused to engage with the clinic after her first appt and her CT scan. My husband and I went to the follow-up appt (we did POA years ago when Dad had dementia, we have done for each other too so all set! Advance Decisions too) to get the diagnosis which was confirmed as mixed AD and vascular. We declined cognitive enhancers there seems to be minimal evidence they work (consultant agreed!) and she takes enough drugs already. We decided not to tell her because she is not too bad mood wise at present but it is very precarious and I don't half cop it when she is bad. I am the only daughter, my brother took his life 12y ago which I think precipitated Mum and Dad's decline. Couldn't manage without my brilliant husband. But I really struggle with her manipulative behaviour and emotional blackmail. A bit easier to manage my feelings now dementia is confirmed but it is still so hurtful. My husband and I returned from living overseas to support my parents after my brother's death. Since Dad died 2y ago Mum has lived in the same block of flats as us, just downstairs. I feel so sorry for folk who are hundreds of miles away but being on the doorstep has its disadvantages too! Sometimes I just wish I could run off home to NZ but that can't happen so we make the most of the situation. She doesn't understand I have a demanding job (in the NHS!) yet sometimes seems to get it. She makes pointed comments that I should be visiting her yet I do, regularly, as well as all finances, bills, shopping, Dr and hospital appts accompanying etc etc she could not live as she does otherwise!. I am new to this forum but hope to pick up tips on how to manage the emotional stuff. Mum has always been a martyr and a little manipulative but it is dreadful now at times. Then when she's in a calm phase I feel a real heel for having such uncharitable thoughts! I know it's going to get worse and go on for years yet which makes me quite despondent at times.

 

[findalzcure41]

I am in a similar position with my Mum. She refused to engage with the clinic after her first appt and her CT scan. My husband and I went to the follow-up appt (we did POA years ago when Dad had dementia, we have done for each other too so all set! Advance Decisions too) to get the diagnosis which was confirmed as mixed AD and vascular. We declined cognitive enhancers there seems to be minimal evidence they work (consultant agreed!) and she takes enough drugs already. We decided not to tell her because she is not too bad mood wise at present but it is very precarious and I don't half cop it when she is bad. I am the only daughter, my brother took his life 12y ago which I think precipitated Mum and Dad's decline. Couldn't manage without my brilliant husband. But I really struggle with her manipulative behaviour and emotional blackmail. A bit easier to manage my feelings now dementia is confirmed but it is still so hurtful. My husband and I returned from living overseas to support my parents after my brother's death. Since Dad died 2y ago Mum has lived in the same block of flats as us, just downstairs. I feel so sorry for folk who are hundreds of miles away but being on the doorstep has its disadvantages too! Sometimes I just wish I could run off home to NZ but that can't happen so we make the most of the situation. She doesn't understand I have a demanding job (in the NHS!) yet sometimes seems to get it. She makes pointed comments that I should be visiting her yet I do, regularly, as well as all finances, bills, shopping, Dr and hospital appts accompanying etc etc she could not live as she does otherwise!. I am new to this forum but hope to pick up tips on how to manage the emotional stuff. Mum has always been a martyr and a little manipulative but it is dreadful now at times. Then when she's in a calm phase I feel a real heel for having such uncharitable thoughts! I know it's going to get worse and go on for years yet which makes me quite despondent at times.[/QUO

Alison, thank you for your response. I'm in a similar situation. My mom lives 4 houses away and it comes with challenges, as you know. We pick her up early every day and have her spend time at my home for at least 12 to 16 hours. When we don't have her we have caregivers. My husband and children have been amazing and I couldn't have done this without them. My sister lives 700 miles away and doesn't see the every day like I do. Today was a bad day. She was really restless and every conversation has been repetitive. I couldn't do any errands that my family needed because we can't leave her. I travel several nights a week for work, my company has been so flexible for me. It's just so draining on some days. This is my first post. I happened to stumble across this site and it makes me sad to know there are so many of us in the same situation.

 

[canary]

Hello @findalzcure41 and welcome to Talking Point. Yes it is sad to realise that there are so many others in out position, and yet I have also found it comforting to know that I am not alone.
Im glad your work is being flexible, but it is still exhausting. You might have to think about a plan B for when her dementia progresses and the bad days increase.

 

[findalzcure41]

Hello @findalzcure41 and welcome to Talking Point. Yes it is sad to realise that there are so many others in out position, and yet I have also found it comforting to know that I am not alone.
Im glad your work is being flexible, but it is still exhausting. You might have to think about a plan B for when her dementia progresses and the bad days increase.

Yes, I'm glad to have found support. I can relate to so many of the posts. We have a plan B, it's moving her to a home in February. We are trying to prepare her current home to sell. She's really sweet so it makes it hard to move her. However, the facility we found needs to have family involvement and interaction. That made the difference for us. We will still be responsible for some of her care, such as buying her items or snacks for her space. What this does for us is gives us a peace of mind in the evenings. My mom tends to walk to my house, sometimes without pants on. The neighbors are great but as winter comes this scares us. She's had numerous utis this year, this has made the confusion worse. Her balance isn't great and she probably needs knee surgery but being 78 she doesn't want it. I just took over her care but can look back now and realize that she had some form of dementia for several years. We hope to find something that will give her a decent quality of life. Thank you for your response!

 

[Teddy1960]

One of the more difficult symptoms of dementia is anosognosia - this is when the person is unable to understand that they have something wrong ith them. It is not denial - they are truly not able to comprehend that they have dementia, hence her saying that the scan only showed things due to old age and insisting that her medication was just vitamins. Unfortunately she truly believes this and you will not be able to convince her this it is otherwise.

Because of this it will be totally impossible to have an open and honest discussion with her about her dementia. If you want to discuss things, then Im afraid that it will have to be just with your dad and you may have to use stealth to get her to do things that are necessary.

I am in a similar position with my Mum. She refused to engage with the clinic after her first appt and her CT scan. My husband and I went to the follow-up appt (we did POA years ago when Dad had dementia, we have done for each other too so all set! Advance Decisions too) to get the diagnosis which was confirmed as mixed AD and vascular. We declined cognitive enhancers there seems to be minimal evidence they work (consultant agreed!) and she takes enough drugs already. We decided not to tell her because she is not too bad mood wise at present but it is very precarious and I don't half cop it when she is bad. I am the only daughter, my brother took his life 12y ago which I think precipitated Mum and Dad's decline. Couldn't manage without my brilliant husband. But I really struggle with her manipulative behaviour and emotional blackmail. A bit easier to manage my feelings now dementia is confirmed but it is still so hurtful. My husband and I returned from living overseas to support my parents after my brother's death. Since Dad died 2y ago Mum has lived in the same block of flats as us, just downstairs. I feel so sorry for folk who are hundreds of miles away but being on the doorstep has its disadvantages too! Sometimes I just wish I could run off home to NZ but that can't happen so we make the most of the situation. She doesn't understand I have a demanding job (in the NHS!) yet sometimes seems to get it. She makes pointed comments that I should be visiting her yet I do, regularly, as well as all finances, bills, shopping, Dr and hospital appts accompanying etc etc she could not live as she does otherwise!. I am new to this forum but hope to pick up tips on how to manage the emotional stuff. Mum has always been a martyr and a little manipulative but it is dreadful now at times. Then when she's in a calm phase I feel a real heel for having such uncharitable thoughts! I know it's going to get worse and go on for years yet which makes me quite despondent at times.

 

[Teddy1960]

I can understand exactly how you are feeling. Finally had the diagnosis my husband has dementia . He too has had scans blood tests and finally at the memory clinic 2 weeks ago we got the diagnosis. He is 57 years old and we feel so cheated. His writing is terrible now, he can't read as many books that he uses to and quite frankly I am scared of the unknown . Sometimes I think the professionals have it wrong but in my heart of hearts I can see the cognitive decline. We gave a support worker coming to see us this week .