Awaiting diagnosis for my mum

[Louise83]

I'm new to the forum, finding it helpful and a little bit comforting to read other people's experiences, as I am feeling slightly alone. Sharing my current situation on here as a way of letting it all out.

I first started to notice my mum becoming more forgetful and easily confused about 1 year ago, she was putting it down to old age (she's 72). She lives with me as she has always needed someone to "keep an eye on her" due to being epileptic, although she hasn't had a seizure in almost 10 years thanks to tweaking of her medication.

As last year went on, she started struggling to grasp what time of day it was, and started eating meals and going to bed early. While I was on holiday last July one of my brothers popped in at 7pm, to find the front door was open and she was in bed sleeping. He woke her up but was unable to convince her of the time, or even what day it was. My other brother came over and they decided to get her to the GP the following day.
She scored low on a memory test, and had to give a urine sample as they suspected an infection.
1 week later, the tests were inconclusive but the GP prescribed anti biotics, and she did better on the memory test.

A couple of months later I felt she was getting worse, to the point where I started making notes of dates where she did/said something particularly worrying.
Around this time she had blood tests and was found to have an iron nd folic acid deficiency, which has since now improved after a course of pills.

After another visit to the doctor in October the GP did another memory test which also included doing simple tasks (folding paper in half, writing a sentence etc), and from this the doctor referrred mum to the memory clinic.

The nurse from the clinic visited the house at the start of January (she actually forgot the appointment, I had to call to find out if she was still coming - certainly lightened the mood!). The nurse carried out a further memory test and gave me a form to complete, after which she referred us for an ECG and CT scan. The ECG was today and we're still waiting on the scan appointment.

We've been plodding along ok, one concern was my mum gets confused when using the oven/cooker so I'm having to be around at meal times. Going to arrange for home care when I'm away overnight (got a couple of small trips planned).

It's been a constant worry for me, but things took a turn for the worst last Thursday. I came home from work, mum seemed her normal self (what I've come to accept as "normal" anyway), but later on in the evening she turned angry and nasty towards me, and started talking about people who have been "coming into the house" during the day. She said they don't talk to her, but they are trying to trick her. She told me they had been in the house all week, so I asked why she was just telling me now, which is when she became a bit nasty towards me, accused me of being "one of them" and that she had been testing me all week to see what happened.

At this point I had to walk away as was getting upset. I told her I was going to bed and she should do the same.
The next morning she woke up and I asked if she remembered what she was saying, hoping she would have forgot, but no she was still adamant people had been in the house.
I called the nurse from the clinic who said it sounded like a urine infection, so I got a GP appointment and while there, mum told the doctor about these people she sees in the house.

The urine test came back clear yesterday so no infection, to be honest I had hoped that was the reason behind her imagining these people. I hadn't mentioned them over the weekend but last night told her I was concerned about what she said, as people shouldn't be getting in the house, she is still of the mind that they were coming in. It's made me worry even more, as otherwise she seemed ok apart from a bad memory and the confusion.

Hoping the CT scan will give some answers but I do realise diagnosis can take a long time.

My friends have been great to talk to about this but as I said, this forum and reading of other people going through similar is helping me. I hate that my mum and this situation is becoming the main topic of conversation with my friends, as strange as that might sound.

Thanks for reading (if you've made it this far!)

 

[karaokePete]

Hello @Louise83, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I'm glad you are taking a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area if a dementia diagnosis is given. If you are interested in these, clicking the following links will take you there

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

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

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

It is possible that your mum is confabulating these tales after watching TV and confusing it with reality. It is also possible that during the darker winter days shadows and reflections are being mistaken for people.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[karaokePete]

I should add that my wife is prone to confuse shadows and reflections for people so I close curtains and turn on lights well before dark.

If you read the Society about changes in behaviour it may give you some insight and tips. Click the 2nd line of the following link to read and/or print it
Changes in behaviour (525)
PDF printable version

As communication may cause some friction it would be well worth reading the thread that can be found with the following link as many members find it useful
https://forum.alzheimers.org.uk/thr...ication-with-the-memory-impaired.30801/unread

 

[MegMog10]

I'm going through the same thing as you with my mum thinking that people are coming in the house, working in the garden, sitting next to her or my dad and in the bed. She has been thinking she's been looking after her young great nieces for a while and also my aunt's dog and has been putting a dog bowl out for it (mum no longer has a dog but has kept the bowl for when mine visit). Sadly she sees women sitting on the couch next to my dad, chatting away and stroking hands, ignoring mum which upsets her. It is very difficult to explain or comfort her about these incidents. Mum also scored low on a memory test and we are awaiting CT scan results. Thinking of you both. It's hard going.

 

[Louise83]

Thanks for the replies, especially the link to communicating with the memory impaired, very helpful.

Thanks Meg, it's so sad hearing other people's stories as well.

 

[Louise83]

Since I posted, my mum had a CT scan of her brain, and we have an appointment at the memory clinic at the end of next month.

Her hallucinations are becoming more regular, still seeing people in the house who don't interact with her. I phoned the clinic a few weeks ago for more advice, as a urine infection has been ruled out. They suggested it could be a blood or chest infection, but both have been ruled out by the GP this week.

Last week me and my brother made the decision to explain to her that these people aren't real and that there is something causing her to hallucinate and that all the tests are for this. She didn't say much but seemed to accept what we were saying. (She always has respected/trusted what my brother says more than me!)

This morning she asked to get dressed in my bedroom as there was an old lady in hers. This was the first time she has told me about seeing someone as it happens so I used it as a chance to show her no one was there and that there is something causing these hallucinations. It was the wrong move as she got angry and accused me of calling her an idiot.
So I will need to go back to playing along/trying to move the conversation on, distract her etc.

She doesn't get distressed over seeing these people, more angry/fed up over them.

Still a few weeks to the memory clinic appointment, as it gets closer I'm getting a little scared. Scared of a diagnosis of dementia, but also scared of being told further tests are needed.

 

[Louise7]

This morning she asked to get dressed in my bedroom as there was an old lady in hers.

Is there a mirror in her bedroom? People can get really scared by seeing their reflection as they think it is someone else. Try removing any mirrors or anything that causes a reflection (pull the curtains so she can't see the windows).

 

[Louise83]

Is there a mirror in her bedroom? People can get really scared by seeing their reflection as they think it is someone else. Try removing any mirrors or anything that causes a reflection (pull the curtains so she can't see the windows).

There is a full length mirror yes, not sure she uses it that much so removing it could be an option. She did specify though that the lady she saw was lying in her bed. She also sees them in the kitchen and living room.

Thanks for the suggestion.

 

[Rosettastone57]

There is a full length mirror yes, not sure she uses it that much so removing it could be an option. She did specify though that the lady she saw was lying in her bed. She also sees them in the kitchen and living room.

Thanks for the suggestion.

Unfortunately this is pretty common with dementia. My mother-in-law who lived on her own and had mixed dementia often used to hallucinate . We had all sorts of things from seeing a young man and baby at the door, to a doctor in a white coat coming to speak to her in the bedroom, to a man performing a sex act at the end of her bed. These people never ever spoke to her and she always said that she would never try and hold a conversation with them. She never seemed particularly bothered by these images. My husband used to tell her that it was the various medications she was on that was causing it. Sometimes she accepted this explanation other times she didn't and became aggressive

 

[Louise83]

Unfortunately this is pretty common with dementia. My mother-in-law who lived on her own and had mixed dementia often used to hallucinate . We had all sorts of things from seeing a young man and baby at the door, to a doctor in a white coat coming to speak to her in the bedroom, to a man performing a sex act at the end of her bed. These people never ever spoke to her and she always said that she would never try and hold a conversation with them. She never seemed particularly bothered by these images. My husband used to tell her that it was the various medications she was on that was causing it. Sometimes she accepted this explanation other times she didn't and became aggressive

It's something I wasn't aware was related to dementia until reading on here of similar stories.

 

[karaokePete]

Mention these hallucinations at the Clinic.

My wife was hallucinating a lot and was prescribed Memantine when her diagnosis came through. This med greatly reduced the hallucinations.

 

[Louise83]

Mention these hallucinations at the Clinic.

My wife was hallucinating a lot and was prescribed Memantine when her diagnosis came through. This med greatly reduced the hallucinations.

I will mention them, thanks.

 

[Louise83]

Mum ended up in hospital early yesterday morning, as all of a sudden she was very unsteady on her legs so called NHS24 who sent an emergency doctor out and referred her to hospital. They suspect a mini stroke so waiting on an MRI scan.

We still have the CT scan results appointment in a couple of weeks, but the doctor at hospital has seen them and advised there is shrinkage of the brain and ischaemia, and the memory clinic consultant will go into more detail re this when we see them on the 24th

I felt terrible leaving her last night, as by night time she was getting very agitated and kept asking when and how long it would take us to get home. I know she's in good care just felt like a wrench walking away last night. Feeling closer to answers and a diagnosis though so looking at the positive (doesn't seem like the right word) side.

 

[Storm trooper]

Hi

I’m new to the forum and any advise would be great!!!
I don’t really know where to start, my mom who is 75 has not yet been diagnosed with dementia but has been for a head scan and memory tests etc, she lives alone and has always been very independent and very fit so to now see how she has changed over the last year has been very upsetting, she has been phoning me asking after my dad as he’s not back from the pub yet!!!!! He sadly passed away nearly 15years ago, she is also cooking for the kids!!!!!!!! Not sure if she’s referring to myself and my sister or our children!! There has been a lot of occasions where she has asked who people are (inc my son) She’s got a great family, we all help and take her out and have her at our homes for dinner (she eats with us) however she makes things up when you ask her what’s she’s had to eat when she’s at home on her own and I’m regularly checking her fridge and throwing food away and restocking it!! Just trying to keep her independent but it’s getting hard!! Would be great to hear I’m not on my own and that others have had similar experiences and how they cope

 

[canary]

Hello @Storm trooper and welcome to the forum.

All the things that you have mentioned are very common symptoms of dementia. Your mum is going back in time to when your dad was alive and you and your sister were children living at home. The making things up is called confabulation and happening because of the gaps in her memory. Her subconscious brain is filling the gaps in her memory with false memory, which to her is indistinguishable from the real thing, so she truly believes the things that she tells you.

Its best not to correct her when she tells you these things and best not to quiz her about things that require memory (like what she has had for dinner). I learned to be very vague with my responses - well I never, really?, my, my and things like that were said very often.

 

[Bollasm]

I'm new to the forum, finding it helpful and a little bit comforting to read other people's experiences, as I am feeling slightly alone. Sharing my current situation on here as a way of letting it all out.

I first started to notice my mum becoming more forgetful and easily confused about 1 year ago, she was putting it down to old age (she's 72). She lives with me as she has always needed someone to "keep an eye on her" due to being epileptic, although she hasn't had a seizure in almost 10 years thanks to tweaking of her medication.

As last year went on, she started struggling to grasp what time of day it was, and started eating meals and going to bed early. While I was on holiday last July one of my brothers popped in at 7pm, to find the front door was open and she was in bed sleeping. He woke her up but was unable to convince her of the time, or even what day it was. My other brother came over and they decided to get her to the GP the following day.
She scored low on a memory test, and had to give a urine sample as they suspected an infection.
1 week later, the tests were inconclusive but the GP prescribed anti biotics, and she did better on the memory test.

A couple of months later I felt she was getting worse, to the point where I started making notes of dates where she did/said something particularly worrying.
Around this time she had blood tests and was found to have an iron nd folic acid deficiency, which has since now improved after a course of pills.

After another visit to the doctor in October the GP did another memory test which also included doing simple tasks (folding paper in half, writing a sentence etc), and from this the doctor referrred mum to the memory clinic.

The nurse from the clinic visited the house at the start of January (she actually forgot the appointment, I had to call to find out if she was still coming - certainly lightened the mood!). The nurse carried out a further memory test and gave me a form to complete, after which she referred us for an ECG and CT scan. The ECG was today and we're still waiting on the scan appointment.

We've been plodding along ok, one concern was my mum gets confused when using the oven/cooker so I'm having to be around at meal times. Going to arrange for home care when I'm away overnight (got a couple of small trips planned).

It's been a constant worry for me, but things took a turn for the worst last Thursday. I came home from work, mum seemed her normal self (what I've come to accept as "normal" anyway), but later on in the evening she turned angry and nasty towards me, and started talking about people who have been "coming into the house" during the day. She said they don't talk to her, but they are trying to trick her. She told me they had been in the house all week, so I asked why she was just telling me now, which is when she became a bit nasty towards me, accused me of being "one of them" and that she had been testing me all week to see what happened.

At this point I had to walk away as was getting upset. I told her I was going to bed and she should do the same.
The next morning she woke up and I asked if she remembered what she was saying, hoping she would have forgot, but no she was still adamant people had been in the house.
I called the nurse from the clinic who said it sounded like a urine infection, so I got a GP appointment and while there, mum told the doctor about these people she sees in the house.

The urine test came back clear yesterday so no infection, to be honest I had hoped that was the reason behind her imagining these people. I hadn't mentioned them over the weekend but last night told her I was concerned about what she said, as people shouldn't be getting in the house, she is still of the mind that they were coming in. It's made me worry even more, as otherwise she seemed ok apart from a bad memory and the confusion.

Hoping the CT scan will give some answers but I do realise diagnosis can take a long time.

My friends have been great to talk to about this but as I said, this forum and reading of other people going through similar is helping me. I hate that my mum and this situation is becoming the main topic of conversation with my friends, as strange as that might sound.

Thanks for reading (if you've made it this far!)

Your very lucky cannot get my mum to except she has a problem and cancelled two referrals I have no.medical help as doctor can not do anymore

 

[Louise83]

Your very lucky cannot get my mum to except she has a problem and cancelled two referrals I have no.medical help as doctor can not do anymore

I was lucky that my mum goes for blood tests regularly for other problems, and I was able to use one of the GP appointments to bring up my concerns.
My mum still isn't concerned herself but I explained to her that I am and her GP is so we should find out if anything is wrong. I try to make light of all the appointments, "oh they can't get enough of you", etc etc.

Got an appointment with the doctor at the memory clinic tomorrow to discuss her CT scan results, feeling scared of what they might diagnose but also worried they will want further tests.

 

[Bollasm]

Hi we have mentioned how important it is but mum is having none of it and it's only get worse and every day is worse there is no answer and doctor said he can not do anymore till she sees there something wrong

 

[Louise83]

I'm sorry it's such a hard situation for you. All I can think to suggest is trying to arrange a home visit from the GP without your mum knowing until they arrive.

A little aside, but I'm a Celtic supporter and last night we lost one of our greatest captains Billy McNeill, who had been suffering dementia for around 9 years. It's really saddened me amongst everything I'm going through with mum. Such a horrible illness.

 

[Bollasm]

hi the doctor has decided not to help anymore he said the matter is closed as mum is refusing its very upsetting for me to deal with . The memory clinic was doing home visits but they were both cancelled by mum and she also rang the gp to close the matter she thinks that we think she going nuts, sorry to hear about your football idol