Were these symptoms all along??

[jojo2018]

My MIL is not yet diagnosed, but after increasingly serious memory issues (including forgetting day to day events, missing cancer medication some days, and some meals) my husband and I are worried she has dementia. Now reading through posts on this forum and others, I am wondering whether several of her past behaviours were all part of the illness too.

One example - a few years ago we were staying with her to help her through a cancer treatment and I threw away a re-potted plant offshoot (from one of her main plants, in a small plastic cup) because it had somehow gotten moldy - but I didn't check with her first. A few days later she asked where it was and seemed upset with me, but then accepted my apology and explanation. However, every day after that for a few weeks she would ask the same question and we would go through the same conversation - over and over again - until we left and went back home (overseas).

Another example - the christmas before last I was getting down her christmas decorations from a high shelf to be helpful, and I noticed the black plastic bag holding the tinsel was ripped, so I changed it into a new plastic bag. A few days later she called to ask my husband where her tinsel was, and he explained. After checking, she said it wasn't hers and that I had told her I was taking hers and putting it into storage, and she wanted me to bring it back (this hadn't happened). He explained I hadn't taken it and that I had changed the bag, but she kept insisting I had told her I had taken it and that she wasn't 'going mad'. After the phonecall ended, she called again about 20 minutes later and the whole conversation was repeated. She then called again and again, every 20-30 minutes, until I was in tears and he stopped answering the phone. I pulled myself together, we went back to stay with her for christmas, and every day she asked me once or twice, until the tree was up and I think she must have finally recognised it was her tinsel after all, because she was happy with the tree and stopped asking.

These small events were surprising and upsetting at the time because she is a sweet, gracious woman (except when driving!) and we have always got on well. I stayed with her and looked after her during parts of her illness (my husband and I took turns) and although she doesn't remember most of that difficult time, I do think it created more of a bond.

But as I reflect back I'm now thinking - were these actually a symptom of dementia? Has it been happening for years? Or am I just overthinking things now??

 

[karaokePete]

Hello @jojo2018, yes, these are typical symptoms of dementia.
Its very common for carers to say that looking back a PWD had symptoms for years before they sought medical help. If was like that for me insofar as I was thinking something else was going on for years.
I once read an article which suggested that dementia can be setting in decades before diagnosis!

 

[Lawson58]

I remember about ten years before my husband was diagnosed with Alzheimer's, I knew that he had trouble with following directions and spatial awareness but didn't pay too much attention to it at the time. The first time it happened, we were out in the car, I told him to take the next turn left and he drove into a bus stop.

Gradually over the years it became obvious to me that other problems were developing, mostly it was his long term memory and the loss of his problem solving skills that were the triggers for getting a diagnosis four years ago. None of it hapened quickly, it just sneaks up on you until you can't ignore it any more.

 

[jojo2018]

Hello @jojo2018, yes, these are typical symptoms of dementia.
Its very common for carers to say that looking back a PWD had symptoms for years before they sought medical help. If was like that for me insofar as I was thinking something else was going on for years.
I once read an article which suggested that dementia can be setting in decades before diagnosis!

Wow, decades. You know that does make sense because even before all of this, many years ago, my FIL had made some comments that I'm now thinking sound like warning signs too. Even now we're not sure but hopeful of a diagnosis in order to get guidance and do the right thing. Thank you for sharing that.

 

[jojo2018]

I remember about ten years before my husband was diagnosed with Alzheimer's, I knew that he had trouble with following directions and spatial awareness but didn't pay too much attention to it at the time. The first time it happened, we were out in the car, I told him to take the next turn left and he drove into a bus stop.

Gradually over the years it became obvious to me that other problems were developing, mostly it was his long term memory and the loss of his problem solving skills that were the triggers for getting a diagnosis four years ago. None of it hapened quickly, it just sneaks up on you until you can't ignore it any more.

I'm sorry to hear that, and hearing that this happened over so many years really resonates. Thanks for sharing your story with me.

 

[Tin]

My mum's obsessions about what I considered to be little, unimportant things started back in 2009 and probably Sundowning too. but there were little forgetful problems before 2009. We thought it might be some form of Dementia, but it was only when her safety became an issue that we were sure and wanted to get a diagnosis. For us, getting mum to a gp was not a problem, but it was the waiting for memory clinic appointments and just before this, we decided to move her in with me, so the process for diagnosis had to start again, registering with new gp and then a six month wait for memory clinic appointment.

 

[Rosettastone57]

My MIL is not yet diagnosed, but after increasingly serious memory issues (including forgetting day to day events, missing cancer medication some days, and some meals) my husband and I are worried she has dementia. Now reading through posts on this forum and others, I am wondering whether several of her past behaviours were all part of the illness too.

One example - a few years ago we were staying with her to help her through a cancer treatment and I threw away a re-potted plant offshoot (from one of her main plants, in a small plastic cup) because it had somehow gotten moldy - but I didn't check with her first. A few days later she asked where it was and seemed upset with me, but then accepted my apology and explanation. However, every day after that for a few weeks she would ask the same question and we would go through the same conversation - over and over again - until we left and went back home (overseas).

Another example - the christmas before last I was getting down her christmas decorations from a high shelf to be helpful, and I noticed the black plastic bag holding the tinsel was ripped, so I changed it into a new plastic bag. A few days later she called to ask my husband where her tinsel was, and he explained. After checking, she said it wasn't hers and that I had told her I was taking hers and putting it into storage, and she wanted me to bring it back (this hadn't happened). He explained I hadn't taken it and that I had changed the bag, but she kept insisting I had told her I had taken it and that she wasn't 'going mad'. After the phonecall ended, she called again about 20 minutes later and the whole conversation was repeated. She then called again and again, every 20-30 minutes, until I was in tears and he stopped answering the phone. I pulled myself together, we went back to stay with her for christmas, and every day she asked me once or twice, until the tree was up and I think she must have finally recognised it was her tinsel after all, because she was happy with the tree and stopped asking.

These small events were surprising and upsetting at the time because she is a sweet, gracious woman (except when driving!) and we have always got on well. I stayed with her and looked after her during parts of her illness (my husband and I took turns) and although she doesn't remember most of that difficult time, I do think it created more of a bond.

But as I reflect back I'm now thinking - were these actually a symptom of dementia? Has it been happening for years? Or am I just overthinking things now??

With my MIL it actually took family members a long time to realise that dementia had taken hold. She had always had mental health problems over many years, including OCD, depression and anxiety disorders. She had many of the behaviour traits common to dementia without the memory loss so we had already developed strategies to deal with her and keep ourselves calm. It was only in 2014 that the memory loss became more apparent. I think back now and wonder if we just put down her behaviour too easily to her personality disorder. The strategy we used over the last 30 years have come into good use now and we just continued with them.

 

[karaokePete]

Wow, decades. You know that does make sense because even before all of this, many years ago, my FIL had made some comments that I'm now thinking sound like warning signs too. Even now we're not sure but hopeful of a diagnosis in order to get guidance and do the right thing. Thank you for sharing that.

In case I got it wrong I did a bit of research and found these references from a recent article on AD research, so, yes, the brain changes kick in many years before diagnosis.

Alzheimer's disease (AD) is a brain disorder whose hallmarks are amyloid plaques and neurofibrillary tangles (Blennow et al, 2006; Zhao et al, 2012; Wang & Mandelkow, 2016). It is believed that up to 15–20 years prior to clinical symptoms of AD (Bateman et al, 2012; Rowe et al, 2013),

If interested you can find things like reports on these studies in this part of the furum
https://forum.alzheimers.org.uk/forums/dementia-related-news-and-campaigns.34/

 

[Rosettastone57]

In case I got it wrong I did a bit of research and found these references from a recent article on AD research, so, yes, the brain changes kick in many years before diagnosis.

Alzheimer's disease (AD) is a brain disorder whose hallmarks are amyloid plaques and neurofibrillary tangles (Blennow et al, 2006; Zhao et al, 2012; Wang & Mandelkow, 2016). It is believed that up to 15–20 years prior to clinical symptoms of AD (Bateman et al, 2012; Rowe et al, 2013),

If interested you can find things like reports on these studies in this part of the furum
https://forum.alzheimers.org.uk/forums/dementia-related-news-and-campaigns.34/

I also read somewhere that untreated depression and untreated hearing loss might be risk factors. When I look back my MIL had both these risk factors. She refused hearing aids and medication over many years.

 

[karaokePete]

I also read somewhere that untreated depression and untreated hearing loss might be risk factors. When I look back my MIL had both these risk factors. She refused hearing aids and medication over many years.

Yes indeed, My wife had suffered with both and both were listed for her as risk factors, along with smoking, family history, previous concussions and high cholesterol.
I met my wife 15 years ago and married her 10 years ago. All these risk factors predated our meeting. I was anti smoking so she stopped, after 35 years of smoking, but I couldn't get her to use her hearing aids and failed in my attempts to talk her out of her depression as she was determined that the cure came in the shape of a pill. She now regrets the fact that she couldn't take on board what I was saying. Now I'm left to reassure and help her through her dementia days then sometimes cry alone when some of the tough days of caring are done and her new meds let her sleep, hey ho, such is life!

 

[oldman1952]

My MIL is not yet diagnosed, but after increasingly serious memory issues (including forgetting day to day events, missing cancer medication some days, and some meals) my husband and I are worried she has dementia. Now reading through posts on this forum and others, I am wondering whether several of her past behaviours were all part of the illness too.

One example - a few years ago we were staying with her to help her through a cancer treatment and I threw away a re-potted plant offshoot (from one of her main plants, in a small plastic cup) because it had somehow gotten moldy - but I didn't check with her first. A few days later she asked where it was and seemed upset with me, but then accepted my apology and explanation. However, every day after that for a few weeks she would ask the same question and we would go through the same conversation - over and over again - until we left and went back home (overseas).

Another example - the christmas before last I was getting down her christmas decorations from a high shelf to be helpful, and I noticed the black plastic bag holding the tinsel was ripped, so I changed it into a new plastic bag. A few days later she called to ask my husband where her tinsel was, and he explained. After checking, she said it wasn't hers and that I had told her I was taking hers and putting it into storage, and she wanted me to bring it back (this hadn't happened). He explained I hadn't taken it and that I had changed the bag, but she kept insisting I had told her I had taken it and that she wasn't 'going mad'. After the phonecall ended, she called again about 20 minutes later and the whole conversation was repeated. She then called again and again, every 20-30 minutes, until I was in tears and he stopped answering the phone. I pulled myself together, we went back to stay with her for christmas, and every day she asked me once or twice, until the tree was up and I think she must have finally recognised it was her tinsel after all, because she was happy with the tree and stopped asking.

These small events were surprising and upsetting at the time because she is a sweet, gracious woman (except when driving!) and we have always got on well. I stayed with her and looked after her during parts of her illness (my husband and I took turns) and although she doesn't remember most of that difficult time, I do think it created more of a bond.

But as I reflect back I'm now thinking - were these actually a symptom of dementia? Has it been happening for years? Or am I just overthinking things now??

Hi there jojo2018, on reading your post there are many things that can cause the problems that you were describing. You first talked about cancer? Certain types of medication can cause problems with memory, mainly short term memory and there can be problems with recall. ie People sometimes remember something that happened sometime ago and they remember the first part of what they wanted to say but they cannot remember the middle part of the sentence so they put something that sounds right. This then becomes fixed as a true memory, eventually they think about what happened at the end. This is then lodged in a part of the brain that is there for medium to long term memory and when they become confused everything becomes mixed up inside the brain so that is why when MIL confronts you about something quite trivial to you, it is deadly serious to her.
Confusion is where a person see's the world differently from the way it is or they cannot rationalise things that's happening to themselves. It can be frightening for the person and this makes them anxious.
Confusion can be caused by several things, bacteria from an infection gives off toxins into the circulatory system and ends up in the brain. These toxins mix with the brains chemical balance and things start to go wrong with the persons thinking causing confusion.
Constipation, urinary infections, chest infections, hypertension, diabetes, stroke and the powerful drugs that are normally given for cancer can change the chemical balance in the brain that helps the brain function as it should normally.
That is why people with a toxic confusional state say odd things and get into rows because they are always right and you cannot change that. You must go along with what they are saying unless it could be dangerous to body, life or an act of criminality.
If a person has a confusional state or has started with early stages of dementia, they might be in another time and place. If they are and you try to bring them back to reality ie Reality Orientation. They might get angry and hostile towards you. So if you find out where they are and what decade they are in, you can start to talk to them as if you were in the same decade as well.
There is a fine line between having dementia, Alzheimer disease, any other type of brain injury until it has been investigated by mini mental state examination. Blood tests, urine test, CT Scan, PET scan and MRI scan. How long have the symptoms been present and has things changed, if so for how long have they been changed for.
I hope you understand where I am coming from because it can be important for that person to live in a place where they are happy, rather than be in a place where everyone else is in a different time and place. Take care and be happy, Best regards Oldman1952.

 

[jojo2018]

Yes indeed, My wife had suffered with both and both were listed for her as risk factors, along with smoking, family history, previous concussions and high cholesterol.
I met my wife 15 years ago and married her 10 years ago. All these risk factors predated our meeting. I was anti smoking so she stopped, after 35 years of smoking, but I couldn't get her to use her hearing aids and failed in my attempts to talk her out of her depression as she was determined that the cure came in the shape of a pill. She now regrets the fact that she couldn't take on board what I was saying. Now I'm left to reassure and help her through her dementia days then sometimes cry alone when some of the tough days of caring are done and her new meds let her sleep, hey ho, such is life!

I'm so sorry to hear things are so tough for you. It sounds like you are dealing with it extremely well, but that doesn't make it easier does it. Wishing you all the best, Jo

 

[jojo2018]

Hi there jojo2018, on reading your post there are many things that can cause the problems that you were describing. You first talked about cancer? Certain types of medication can cause problems with memory, mainly short term memory and there can be problems with recall. ie People sometimes remember something that happened sometime ago and they remember the first part of what they wanted to say but they cannot remember the middle part of the sentence so they put something that sounds right. This then becomes fixed as a true memory, eventually they think about what happened at the end. This is then lodged in a part of the brain that is there for medium to long term memory and when they become confused everything becomes mixed up inside the brain so that is why when MIL confronts you about something quite trivial to you, it is deadly serious to her.
Confusion is where a person see's the world differently from the way it is or they cannot rationalise things that's happening to themselves. It can be frightening for the person and this makes them anxious.
Confusion can be caused by several things, bacteria from an infection gives off toxins into the circulatory system and ends up in the brain. These toxins mix with the brains chemical balance and things start to go wrong with the persons thinking causing confusion.
Constipation, urinary infections, chest infections, hypertension, diabetes, stroke and the powerful drugs that are normally given for cancer can change the chemical balance in the brain that helps the brain function as it should normally.
That is why people with a toxic confusional state say odd things and get into rows because they are always right and you cannot change that. You must go along with what they are saying unless it could be dangerous to body, life or an act of criminality.
If a person has a confusional state or has started with early stages of dementia, they might be in another time and place. If they are and you try to bring them back to reality ie Reality Orientation. They might get angry and hostile towards you. So if you find out where they are and what decade they are in, you can start to talk to them as if you were in the same decade as well.
There is a fine line between having dementia, Alzheimer disease, any other type of brain injury until it has been investigated by mini mental state examination. Blood tests, urine test, CT Scan, PET scan and MRI scan. How long have the symptoms been present and has things changed, if so for how long have they been changed for.
I hope you understand where I am coming from because it can be important for that person to live in a place where they are happy, rather than be in a place where everyone else is in a different time and place. Take care and be happy, Best regards Oldman1952.

Thank you for this detailed reply, I will share all of this with my husband. At the moment we have had one memory test (which the Dr said she did extremely badly at) and we are waiting for the second assessment this week. Her cancer Drs have just recently also refused to sign over her cancer medication to her without a third party supervising, because they identified for themselves that her memory wasn't what it was - so tomorrow we are hiring a daily carer to help her with the medication (although she is very upset about it, it is essential for her getting treated). If we raise all of these concerns with both sets of Drs, hopefully we can find out the best way to proceed - as you say there are many possible explanations and it is a very scary and unsettling time for her, so we need to be very careful how we support her. Thanks again, Jo.

 

[karaokePete]

I'm so sorry to hear things are so tough for you. It sounds like you are dealing with it extremely well, but that doesn't make it easier does it. Wishing you all the best, Jo

Thank you.
However, I'd hate to give the impression that all days are bad ones as most days are either pretty good or just mildly 'trying', tiring or strange. I only get really bad days a couple of times in a month so I consider myself lucky when compared to many on the forum. We still live well with dementia and my glass always remains half full even though my wife's seems permanently empty.