my 83 year old mother has been diagnosed with mixed dementia. We are waiting for her to have an ECG to see if it will be safe for her to try the medications that may help slow development of dementia symptoms, but she has serious heart problems including atrial fibrillation and prosthetic heart valves so I’m not confident she will be able to have the meds. My worry is that she says if she can’t have the meds, she will stop taking all her current medication (including warfarin to reduce the risk of stroke) because she doesn’t want to face the inevitable decline. I have no idea how to deal with this. Has anyone here experienced a similar situation?
Mum just diagnosed and very low
- Thread starter CardiffGirlInEssex
- Start date
It must have been devastating for both your mum and you when you heard the diagnosis confirmed. There is no right or wrong way for what happens next. My mum steadfastly refuses to take any medication for her Alzheimer's because she thinks all medicine is 'poison'. It breaks my heart that she is declining faster than she might if she took medicine but I have to respect her decision. To be honest I get shot down in flames if I mention medicine and I have now learned to go with the flow and not query, try to reason or argue with her as it doesn't have any effect and we both just got upset.
Hello @CardiffGirlInEssex, welcome to TP. I hope you find the forum to be a friendly and supportive place. Your low feelings at the moment may be due to what is called anticipatory grief, which is common after a diagnosis. I found I got through that quickly after my wife’s diagnosis by getting busy with arranging things like Wills, Power of Attorney etc and researching dementia.
The checks have to be made before the Alzheimer’s meds are given and I hope they will be made available to your mother. I would think it’s possible they will be available despite the history or why else would they check. If the meds aren’t given, if it’s any consolation, they don’t suit everyone anyway and for many only work for a very short time. In my wife’s case they seem to have slowed the progression of the dementia but they certainly haven’t stopped it.
If you take a look around the past threads on the site you will see that these meds have been discussed in the past. You may also want to check the vast information source that is the publication list and do a post code check for support services that may be available in your area and you can click on the following links to do this
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
The checks have to be made before the Alzheimer’s meds are given and I hope they will be made available to your mother. I would think it’s possible they will be available despite the history or why else would they check. If the meds aren’t given, if it’s any consolation, they don’t suit everyone anyway and for many only work for a very short time. In my wife’s case they seem to have slowed the progression of the dementia but they certainly haven’t stopped it.
If you take a look around the past threads on the site you will see that these meds have been discussed in the past. You may also want to check the vast information source that is the publication list and do a post code check for support services that may be available in your area and you can click on the following links to do this
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
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Hopefully your mum will be allowed the medications but as stated by someone else already they will at best slow her decline not halt it. If she cannot have them you need to ensure the other medications are taken. Rather harshly you may be introduced early on to one reality of helping a person with Dementia, namely the use of white lies, evasions, half truths, etc. Her GP would I am sure be concerned if her existing medications were not taken. Seek that person’s advice. Possibly your mum could be given a vitamin C supplement introduced to her as a “memory pill”. The alternative is no Warfarin taken and a significant increase in the risk of a stroke. I felt uncomfortable when I started having to tell my mum little white lies, as she raised her children to respect the truth. Getting mum through two cataract procedures she was deeply anxious about was difficult, but proved to be very worthwhile. Half truths helped.
I have a lot of empathy for your position. I remember when I started to care for my mum I had a lot of anxiety, what to do, where to get information, what is the best thing to do, how to coax a loved one to do what is required in their best interests? Cut yourself some slack. In reality there are few golden bullet answers. When you have met one PWD that is exactly what you have done, met one PWD. Many will have common problems, but each person is unique. Frequently overlooked is the point that Carers also vary greatly. Some are very practical, others better at emotional strains, etc. You may feel anxious and overwhelmed at the start and think god how will I cope as things develop, something that caused me a lot of initial anxiety. Your knowledge and experience will grow, developed by each new issue that confronts you. Your mum’s statement on her medication may force you to consult the GP for advice, or she may revise her opinion or possibly simply forget it. Please remember your mum is going through a learning process as well. Initial reaction may well change, but better to have a fallback plan of action.
Finally stay in contact with the forum. I read a lot of threads but as months passed I found myself getting anxious and emotionally low. I came to the forum with several issues that were bothering me. Each time within a few days several people had posted really useful replies. It felt great to tap into a wealth of experience given generously by strangers. We do not meet but we share the carer role, with all of the related anxiety, frustration, uncertainty but also beautiful moments few others outside the role will share. Hope your mum gets the medication, if not changes her opinion or takes her vitamin C or whatever else the GP might issue as a “memory pill”. Stay well.
I have a lot of empathy for your position. I remember when I started to care for my mum I had a lot of anxiety, what to do, where to get information, what is the best thing to do, how to coax a loved one to do what is required in their best interests? Cut yourself some slack. In reality there are few golden bullet answers. When you have met one PWD that is exactly what you have done, met one PWD. Many will have common problems, but each person is unique. Frequently overlooked is the point that Carers also vary greatly. Some are very practical, others better at emotional strains, etc. You may feel anxious and overwhelmed at the start and think god how will I cope as things develop, something that caused me a lot of initial anxiety. Your knowledge and experience will grow, developed by each new issue that confronts you. Your mum’s statement on her medication may force you to consult the GP for advice, or she may revise her opinion or possibly simply forget it. Please remember your mum is going through a learning process as well. Initial reaction may well change, but better to have a fallback plan of action.
Finally stay in contact with the forum. I read a lot of threads but as months passed I found myself getting anxious and emotionally low. I came to the forum with several issues that were bothering me. Each time within a few days several people had posted really useful replies. It felt great to tap into a wealth of experience given generously by strangers. We do not meet but we share the carer role, with all of the related anxiety, frustration, uncertainty but also beautiful moments few others outside the role will share. Hope your mum gets the medication, if not changes her opinion or takes her vitamin C or whatever else the GP might issue as a “memory pill”. Stay well.
Thank you for you response, at this point it’s helpful to know anything about how others have handled this stage. I will try to remember your suggestion of going with the flow and not arguing, it’s not always easy as we have always tended to argue (we are very much alike in temperament!).
Thank your for all these responses, all with helpful ideas and very welcome support. The concept of anticipatory grief really strikes a chord, as does the advisability yet difficulty of telling white lies to avoid confrontation. That is against everything mum brought me up to do, but I’ve already been doing it and always feel guilty about it.
I agree with @Whisperer If she can't have the real thing then a substitute vitamin pill as a memory pill may work. Not sure of the ethics really but with dementia ethics can fly out of the window as far as I am concerned. I will do what is best for dad even if it includes telling fibs and your mum needs her warfarin..
Dad is on the real thing but whether it has worked or not is a mystery to me. He has been on it since January but he has deteriorated and I don't know how it is possible to judge whether he would have been worse without the drug or not.
Still worth a try though if they prescribe it for her.
Dad is on the real thing but whether it has worked or not is a mystery to me. He has been on it since January but he has deteriorated and I don't know how it is possible to judge whether he would have been worse without the drug or not.
Still worth a try though if they prescribe it for her.
So today I was informed that Mum is well enough to try Aricept, which will hopefully start next week. I am well aware that there are no guarantees this will have any effect on the progress of the disease, but it is worth a try. When I saw Mum last week she seemed quite cheerful, though she still thinks she doesn’t forget anything!! I said well, you have good recall of old stuff, but I notice that you don’t always remember what we talked about five minutes ago. Her response to that was that she doesn’t always pay attention! I let it go at that point.
Anyway, at least we won’t be reduced to any kind of subterfuge about the Aricept, which is a relief .
Anyway, at least we won’t be reduced to any kind of subterfuge about the Aricept, which is a relief .
