I have been worried about my mum's declining memory for some time. She is still able to function normally but at our visit to the GP today he wanted to refer mum to the memory clinic. She flatly refused as she is still trying to come to terms with my dad's death from dementia two years ago. Does everyone have to go down the route of memory clinic?
Refusal to accept diagnosis
- Thread starter Clarabellakitty
- Start date
Hello @Clarabellakitty and welcome to DTP
Im afraid that denial or loss of insight is very common with dementia.
Im not sure whether you are asking if there is a different person who could diagnose her dementia, or whether you are asking whether she needs a diagnosis at all?
I am not sure whether anyone else would be able to properly diagnose dementia - it requires memory tests, a history of problems and usually an MRI scan. Even if there were someone else, would she be willing to see them and have these tests done?
A diagnosis will open up doors for help and support. My OH does not have a diagnosis and this means that we cannot access the local dementia hub, Alzheimers Society activities, most day care centres and when he needed respite earlier on in the year only one place would accept him and even they said that if he deteriorated further they could not accept him.
There may also be medication to help with the symptoms.
It may be that you could leave things at the moment, but you may eventually have to get her to the memory clinic by stealth.
Im afraid that denial or loss of insight is very common with dementia.
Im not sure whether you are asking if there is a different person who could diagnose her dementia, or whether you are asking whether she needs a diagnosis at all?
I am not sure whether anyone else would be able to properly diagnose dementia - it requires memory tests, a history of problems and usually an MRI scan. Even if there were someone else, would she be willing to see them and have these tests done?
A diagnosis will open up doors for help and support. My OH does not have a diagnosis and this means that we cannot access the local dementia hub, Alzheimers Society activities, most day care centres and when he needed respite earlier on in the year only one place would accept him and even they said that if he deteriorated further they could not accept him.
There may also be medication to help with the symptoms.
It may be that you could leave things at the moment, but you may eventually have to get her to the memory clinic by stealth.
Hello @Carabellakitty
Is it possible your mother is recognising the signs in herself after caring for your dad with dementia but it too afraid to face it?
Perhaps you could suggest this to her GP and ask if there is any other way she could be assessed. My husband was treated for depression by his GP before he was referred for a scan. If your mum is still grieving for your dad there could be other causes for her memory loss. One thing which comes to my mind isyour mum being preoccupied.
Hello @Clarabellakitty
I would agree that your mum is probably scared of a diagnosis after caring for your Dad. I assume the doctor has rule out all other causes for the symptoms you are seeing?
I never did put my mum through the memory clinic. She would have found the whole thing too distressing. She was eventually diagnosed (a "probable diagnosis") as having vascular dementia from a scan following a stroke which made her existing symptoms much worse. Up to then, we managed reasonably well for a couple of years without diagnosis or medication. When I first spoke to mum's doctor about my concerns (I already has PoA by then) he said he wouldn't prescribe any treatment at that point in any case and "we" (meaning me) should just give her the support she needed. He didn't mention a memory clinic.
Mum has been in care for over three years now and still has no idea that she has dementia.
I wonder if the best approach is to just note down any concerns or odd behaviour for now and send to your mum's doctor for the record.
I would agree that your mum is probably scared of a diagnosis after caring for your Dad. I assume the doctor has rule out all other causes for the symptoms you are seeing?
I never did put my mum through the memory clinic. She would have found the whole thing too distressing. She was eventually diagnosed (a "probable diagnosis") as having vascular dementia from a scan following a stroke which made her existing symptoms much worse. Up to then, we managed reasonably well for a couple of years without diagnosis or medication. When I first spoke to mum's doctor about my concerns (I already has PoA by then) he said he wouldn't prescribe any treatment at that point in any case and "we" (meaning me) should just give her the support she needed. He didn't mention a memory clinic.
Mum has been in care for over three years now and still has no idea that she has dementia.
I wonder if the best approach is to just note down any concerns or odd behaviour for now and send to your mum's doctor for the record.
I'm sure you're right...she is afraid. At the moment she still has capacity and is quite able to care for herself. I just don't want to destroy our relationship by pushing things when she is adamant she won't go
I think it would distress her too much. She suffers depression anyway and even more so since my dad died. All blood tests and ECG are normal. I guess we just have to see where the journey takes us together but its nice to hear that nit everyone goes to memory clinic.
I think that is a good approach for now. Keep posting for support and advice as you go. There are lots of us out here to help you along.
Dear @Clarabellakitty
Clearly I have no knowledge of your mum, but sounds like my own a few years back, poor memory but coping with the day to day pretty well.
I read your words and hope I can now offer you some advice which would have helped me a few years ago. I guess I see you in me back then and would spare you some of the anguish I went through. I appreciate your mum and my own might be different as personality types but the circumstances are some what similar. Please read on and some of my comments might be useful to you. Others have already posted good advice. If nothing I say strikes a chord then no harm done.
1) Mum went to the Memory Clinic reluctantly in April 2015 and was diagnosed as having Mild Cognitive Impairment. As the saying goes a lot of water has flowed under the bridge since then. Based on her medical history mum most likely has undiagnosed Vascular Dementia. That is not definite but her history of heart problems points in that direction.
2) I and our GP tried to get mum to attend the Memory Clinic again but she was adamant she would not go. One emotional conversation mum screamed “if I am going doally I do not want to know”. I went through months not knowing what to do for the best, mum’s illness was off limits to talk about.
3) Mum would never have agreed to go but the local carers group allowed me to attend on my own. Through them I met a counsellor from the Alzheimer’s Society. If as seems likely mum has Vascular Dementia there are no treatments a part from control of her blood pressure. Mum is a very private person so attending day care or carers groups could only happen when her illness is very advanced so she would not understand. I live with her, was able to take early retirement, can do all I can to help her. Those are all pluses but my relationship with mum is crucial to enable me to use them to help her.
The counsellor identified that my mum’s refusal to return to the Memory Clinic was causing me upset. Likely no treatment available, mum content and happy in her shrinking world, GP practice aware of the circumstances, me with her for company, emotional and physical support. I could possibly destroy our relationship and get mum to the MC or bite the bullet and accept we would do things her way.
So three years later mum’s illness has gradually moved on, but we get by. When mum gets worse and can no longer recognise what is happening I will get her back to the MC. I work within what mum will do. I am not saying I am happy with the situation, but I have learnt to accept it. I have learnt to make peace with myself. A stroke or heart attack could kill mum next week, Dementia is more of a slow burn. I guess I have been forced to put matters into context, do things mum’s way for now, accept it is her illness and I am there to care for her.
I reluctantly accepted my mum’s wishes for now. Her trust in me is vital to her long term care at home. I could not risk destroying it to get a most likely diagnosis of Vascular Dementia, which means no treatments. Very little gain potentially obtained at a very high price. Apparently a significant amount of all types of Dementia cases never get a formal diagnosis. That does not stop loved ones caring for them as best they can. Always remember that point. Where treatments are available for some Dementia types they do not work for everyone, where they do they slow progress of the illness they do not halt or reverse it. Dementia treatment is roughly where cancer treatment was decades ago as a rough guide.
okay that is my position and the compromise I reached. I am “lucky” being able to care for mum full time as her needs slowly develop. One day we will revisit the MC but at a time that is right for mum.
The role of the carer is full of uncertainty, anxiety, messy compromises, feelings of guilt you are failing to do all that you can, etc. Your mum cared for your dad through his Dementia only a few years ago. A very emotional experience. Have you spoken to anyone else about this? Contacted the Alzheimer’s Society, their support line, etc. Remember you may not have recognised a crucial factor because you are worried about your mum, but you have already stepped onto the Carers emotional train. Very early on you are being confronted by one of those messy compromises I mentioned earlier. The emotional part of your brain screams get your mum to the MC. The logical side is quieter but might be saying give matters some time, seek advice, accept you may need to do things how your mum wants not how you want, recognise you are most likely boarding the Carers train and need to try and see things differently. Emotions play a large and growing part.
Sorry for the long reply but I could not just walk on by. If any of the above helps at any level it was worth the key strokes. If mum will not go to the MC at least try and get basics in place like Lasting Powers of Attorney. Please keep reading threads on here and posting on here when you need to. The members of this forum are very helpful, have a lot of experience to share. The caring role is often not clear cut, you end up doing your best as the circumstances allow and try to remain part of the solution. Best wishes for the future.
Clearly I have no knowledge of your mum, but sounds like my own a few years back, poor memory but coping with the day to day pretty well.
I read your words and hope I can now offer you some advice which would have helped me a few years ago. I guess I see you in me back then and would spare you some of the anguish I went through. I appreciate your mum and my own might be different as personality types but the circumstances are some what similar. Please read on and some of my comments might be useful to you. Others have already posted good advice. If nothing I say strikes a chord then no harm done.
1) Mum went to the Memory Clinic reluctantly in April 2015 and was diagnosed as having Mild Cognitive Impairment. As the saying goes a lot of water has flowed under the bridge since then. Based on her medical history mum most likely has undiagnosed Vascular Dementia. That is not definite but her history of heart problems points in that direction.
2) I and our GP tried to get mum to attend the Memory Clinic again but she was adamant she would not go. One emotional conversation mum screamed “if I am going doally I do not want to know”. I went through months not knowing what to do for the best, mum’s illness was off limits to talk about.
3) Mum would never have agreed to go but the local carers group allowed me to attend on my own. Through them I met a counsellor from the Alzheimer’s Society. If as seems likely mum has Vascular Dementia there are no treatments a part from control of her blood pressure. Mum is a very private person so attending day care or carers groups could only happen when her illness is very advanced so she would not understand. I live with her, was able to take early retirement, can do all I can to help her. Those are all pluses but my relationship with mum is crucial to enable me to use them to help her.
The counsellor identified that my mum’s refusal to return to the Memory Clinic was causing me upset. Likely no treatment available, mum content and happy in her shrinking world, GP practice aware of the circumstances, me with her for company, emotional and physical support. I could possibly destroy our relationship and get mum to the MC or bite the bullet and accept we would do things her way.
So three years later mum’s illness has gradually moved on, but we get by. When mum gets worse and can no longer recognise what is happening I will get her back to the MC. I work within what mum will do. I am not saying I am happy with the situation, but I have learnt to accept it. I have learnt to make peace with myself. A stroke or heart attack could kill mum next week, Dementia is more of a slow burn. I guess I have been forced to put matters into context, do things mum’s way for now, accept it is her illness and I am there to care for her.
I reluctantly accepted my mum’s wishes for now. Her trust in me is vital to her long term care at home. I could not risk destroying it to get a most likely diagnosis of Vascular Dementia, which means no treatments. Very little gain potentially obtained at a very high price. Apparently a significant amount of all types of Dementia cases never get a formal diagnosis. That does not stop loved ones caring for them as best they can. Always remember that point. Where treatments are available for some Dementia types they do not work for everyone, where they do they slow progress of the illness they do not halt or reverse it. Dementia treatment is roughly where cancer treatment was decades ago as a rough guide.
okay that is my position and the compromise I reached. I am “lucky” being able to care for mum full time as her needs slowly develop. One day we will revisit the MC but at a time that is right for mum.
The role of the carer is full of uncertainty, anxiety, messy compromises, feelings of guilt you are failing to do all that you can, etc. Your mum cared for your dad through his Dementia only a few years ago. A very emotional experience. Have you spoken to anyone else about this? Contacted the Alzheimer’s Society, their support line, etc. Remember you may not have recognised a crucial factor because you are worried about your mum, but you have already stepped onto the Carers emotional train. Very early on you are being confronted by one of those messy compromises I mentioned earlier. The emotional part of your brain screams get your mum to the MC. The logical side is quieter but might be saying give matters some time, seek advice, accept you may need to do things how your mum wants not how you want, recognise you are most likely boarding the Carers train and need to try and see things differently. Emotions play a large and growing part.
Sorry for the long reply but I could not just walk on by. If any of the above helps at any level it was worth the key strokes. If mum will not go to the MC at least try and get basics in place like Lasting Powers of Attorney. Please keep reading threads on here and posting on here when you need to. The members of this forum are very helpful, have a lot of experience to share. The caring role is often not clear cut, you end up doing your best as the circumstances allow and try to remain part of the solution. Best wishes for the future.
Thank you so much for your words...they really do resonate. Believe it or not I'm a nurse but all the years of experience mean nothing when it's one of your own. I helped my mum care for my Dad and I just feel angry that I'm going to have to go through this again...on my own. I have no brothers or sisters or any family apart from my husband and is typically backing away with the old phrase "we'll get through it" but really it's me who is going to have to go through it because its MY mum. I've told her I support her decision not to go to the memory clinic. We'll do this together. I'm not only afraid of my mum's decline but as we'll be self funding I'm afraid of losing my home. When my dad went into care my mum didn't want to stay in her home so as we had a smaller house (in the same village) with neighbours near she wanted to move into our house and we moved into her large family home. When my Dad died we bought his share and kept the mortgage on our own home. So basically we own have of what is now "our" home and Mum owns the other. I feel sick at the thought of going through this journey with my mum again after dad and at the end of it having to sell our house that I've made a home because mum owns half of it. This disease is so cruel. It mercilessly takes away a loved one and even at the end you're left with nothing!! I really feel I've hit rock bottom but I have to stay strong ?
Dear @Clarabellakitty
Yes you are right no matter how much nursing experience you have it is very different when it is one of your own suffering.
I appreciate your comments about possibly suffering more in the future regarding uncertainty on your home. In reality until you step into the Dementia minefield I do not believe anyone really understands the all encompassing nature of the illness.
It helps me to focus on the here and now each day with mum. Help with the shower, get her to take the required medication, what are we going to eat, etc. There is normally some research to do on the computer eg open door bath versus walk in shower, different types of protective underpants for when required, which is most likely not far off, stairlift viability in this house, etc. Then there are the times (still rare) when mum mixes me up with dad, her dad, even her mum once. All long ago dead. At one level my horizon has reduced, but in some strange way it has widened. It is now at most next month, but the range of my thoughts has broadened.
You are balanced between having experience to draw on, but also the emotional response of oh not not this again. Please always remember you in all of the days to come. Make sure your husband gets involved not just supports with warm words. Take the time to hear the birds sing in the trees, the changing of the seasons, see what is real and important not what the advertising industry say is important. Know yourself, know your limits, but accept that you may surprise yourself on that point.
I will wish you well. The PWD has a journey with this dreadful illness, but so does each carer watching over and helping them. Please continue to use this forum.
Yes you are right no matter how much nursing experience you have it is very different when it is one of your own suffering.
I appreciate your comments about possibly suffering more in the future regarding uncertainty on your home. In reality until you step into the Dementia minefield I do not believe anyone really understands the all encompassing nature of the illness.
It helps me to focus on the here and now each day with mum. Help with the shower, get her to take the required medication, what are we going to eat, etc. There is normally some research to do on the computer eg open door bath versus walk in shower, different types of protective underpants for when required, which is most likely not far off, stairlift viability in this house, etc. Then there are the times (still rare) when mum mixes me up with dad, her dad, even her mum once. All long ago dead. At one level my horizon has reduced, but in some strange way it has widened. It is now at most next month, but the range of my thoughts has broadened.
You are balanced between having experience to draw on, but also the emotional response of oh not not this again. Please always remember you in all of the days to come. Make sure your husband gets involved not just supports with warm words. Take the time to hear the birds sing in the trees, the changing of the seasons, see what is real and important not what the advertising industry say is important. Know yourself, know your limits, but accept that you may surprise yourself on that point.
I will wish you well. The PWD has a journey with this dreadful illness, but so does each carer watching over and helping them. Please continue to use this forum.
I think you can relax about the house. You own 50% of it and cannot be made to sell your share. It might be complicated and you could even have to pay your mum a bit of rent for her half if she went into a care home, but I am sure you cannot be forced to become homeless. When the time comes, get expert advice.
