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Recently diagnosed but rapid deterioration

Jadiekay

New member
Feb 15, 2021
1
0
Hi,
I'm posting this not really because I have a question but because I'm just seeking support.
My mum, 55, has recently been diagnosed with Alzheimer's disease. Unfortunately she is extremely ill and presenting as if she's in the later stages of the disease. She can no longer walk, talk, and is losing the ability to swallow, so isn't eating or drinking.
The consultants have explained how delirium (caused by UTIs) is also contributing to the severity of the symptoms.
We were preparing for her to be taken into the care system soon but whilst she's on a drip to give her fluids, she must stay in hospital. We've also been told that they won't resuscitate if her heart stops. We have been told that she potentially only has a few months if she continues the way she is.

I just wanted to know if anyone else has experienced such a rapid progression of the disease? Mum only started experiencing memory issues in the first lockdown (around April 2020) and now has been receiving 24h care since Jan 2021.
This has all happened so fast. I feel as though my mum has been snached from me bit by bit and I'm unsure of how my life will be without her.
Thank you for reading.
 

nae sporran

Volunteer Host
Oct 29, 2014
8,094
0
Bristol
Hullo and welcome to Talking Point @Jadiekay. I've not experienced such rapid decline though my partner's Vascular Dementia took a serious turn for the worse after a long run of UTIs so I feel some of your pain. Not sure what else to say, but you will find support here and I wish you strength.
 

nick97

Registered User
Feb 16, 2020
59
0
Hi @Jadiekay, my mum went through the exact same thing a couple of weeks ago; the rapid deterioration in the space of a week absolutely shocked me, and it was exactly like your mum: could no longer walk, swallow and was pushing food and drink away.

And, well, it personally felt to me on the Monday that mum was going to die within the week, and sadly she did on the Friday.

What surprised me was that in the last week, my mum saw a GP, two paramedics from the ambulance, a nurse from the memory team and about three districts nurses, and not one of them seemed to understand that my mum was close to death. I would be very weary of "a few months". I'm sorry to say that I would prepare yourself for the worst 😔

Though it is true that an infection and/or dehydration that exacerbate dementia, and so if your mum is hydrated via drip, she might recover somewhat. I got my fingers for you that she does 🤞🙏
 

marionq

Registered User
Apr 24, 2013
6,394
0
Scotland
@Jadiekay my thoughts are with you both. She is so young it is cruel. It does not sound good though as you are aware. Are they letting you be with her?
 

Irish2021

Registered User
Feb 13, 2021
13
0
My Mother also went downhill rapidly with delirium from a UTI, she had dementia from a hip fracture in Jan 2019. We had been coping very well. She only went to hospital as a precaution to get antibiotics by IV in December last. A few days later a hospital doctor told me her heart, lungs, blood pressure, oxygen, kidneys etc were all sound but she had some delirium but would soon be discharged, within a week she couldn't talk, get out of bed, stand, feed herself or swallow. A few days after that she had aspirated pneumonia, after food went 'down the wrong way' as she was being fed.
A few days after that she passed away, on January 7th. I still can't come to terms with the speed of it all.
My very best wishes to you and your Mother.
 

Irish2021

Registered User
Feb 13, 2021
13
0
Hi @Jadiekay, my mum went through the exact same thing a couple of weeks ago; the rapid deterioration in the space of a week absolutely shocked me, and it was exactly like your mum: could no longer walk, swallow and was pushing food and drink away.

And, well, it personally felt to me on the Monday that mum was going to die within the week, and sadly she did on the Friday.

What surprised me was that in the last week, my mum saw a GP, two paramedics from the ambulance, a nurse from the memory team and about three districts nurses, and not one of them seemed to understand that my mum was close to death. I would be very weary of "a few months". I'm sorry to say that I would prepare yourself for the worst 😔

Though it is true that an infection and/or dehydration that exacerbate dementia, and so if your mum is hydrated via drip, she might recover somewhat. I got my fingers for you that she does 🤞🙏
Very sorry to hear of your loss, similar happened to my own Mother, as I've just posted. It's a horrendous illness.
 

Lynne K

New member
Mar 5, 2021
6
0
I am so shocked to find that people can deteriorate so quickly! I am so sorry for everyone!
My daughter is 46 and was sectioned at the end of March 2020 hearing voices and shouting and being very distressed. An MRI scan on her brain early March 2020 showed no problem with her brain BUT she has been in hospital for nearly a year getting worse and worse. I have been very vocal in my belief that she doesnt have schizophrenia because she hasnt responded to the antipsychotic drugs as I was told she should. Three weeks ago I was told the MRI had been misread and did infact show significant degenerative brain disease. She can walk but is choking on food, cannot ask for what she needs - the nurses have to guess, and falls to the floor rigid with low blood pressure. She is barely able to function. We are waiting to see a neurologist and for a PET scan but I expect a diagnosis of dementia. Can people really deteriorate this quickly? Last March she was working in a hospital as a domestic. I am devastated.
 

Louise7

Volunteer Host
Mar 25, 2016
3,001
0
Hello @Lynne K welcome to DTP but so sorry to hear about your daughter, and at such a young age too. There are a number of different types of dementia, and I think that some may result in faster deterioration than others but there are various factors to take into account too so rate of progression can vary. Progression can also be accelerated by other health issues such as an infection. Have the medical team already suggested that your daughter may have a form of dementia, or are they waiting for the PET scan results? Please keep posting as you'll find lots of support here to help you through such a difficult time.
 

Lynne K

New member
Mar 5, 2021
6
0
Dementia has been mentioned by medical staff but they are waiting for a PET scan, no appointment yet, and a neurologist is ringing (??) the ward where she is on Friday. I am trying to speak to the neurologist on the phone.
 

Eddiep

Registered User
Mar 7, 2021
32
0
Hi,
I'm posting this not really because I have a question but because I'm just seeking support.
My mum, 55, has recently been diagnosed with Alzheimer's disease. Unfortunately she is extremely ill and presenting as if she's in the later stages of the disease. She can no longer walk, talk, and is losing the ability to swallow, so isn't eating or drinking.
The consultants have explained how delirium (caused by UTIs) is also contributing to the severity of the symptoms.
We were preparing for her to be taken into the care system soon but whilst she's on a drip to give her fluids, she must stay in hospital. We've also been told that they won't resuscitate if her heart stops. We have been told that she potentially only has a few months if she continues the way she is.

I just wanted to know if anyone else has experienced such a rapid progression of the disease? Mum only started experiencing memory issues in the first lockdown (around April 2020) and now has been receiving 24h care since Jan 2021.
This has all happened so fast. I feel as though my mum has been snached from me bit by bit and I'm unsure of how my life will be without her.
Thank you for reading.
Hi Jade,my mum has just been diagnosed with vascular dementia which I feel is progressing very quickly now I know which type she has. Like your mum she was fine in August 20 but since Jan she has just gone so down hill, her medication is all over the place she unplugs the phone so I can’t ring her. When I look in her fridge she has hundreds of the same thing. It’s taken me by surprise and I feel like you that I’m losing her as each day passes by and I feel like we are not ready yet.
 

Susanthomson

New member
Mar 18, 2021
1
0
Hi Jade,my mum has just been diagnosed with vascular dementia which I feel is progressing very quickly now I know which type she has. Like your mum she was fine in August 20 but since Jan she has just gone so down hill, her medication is all over the place she unplugs the phone so I can’t ring her. When I look in her fridge she has hundreds of the same thing. It’s taken me by surprise and I feel like you that I’m losing her as each day passes by and I feel like we are not ready yet.
Hi jade. My ex husband is living in Tenerife. He lost his partner last year and since has gone downhill fast. Looking for residential care home and need recommendations. He lives in Adeje. Can anyone help.
susan
 

Lynne K

New member
Mar 5, 2021
6
0
Dementia has been mentioned by medical staff but they are waiting for a PET scan, no appointment yet, and a neurologist is ringing (??) the ward where she is on Friday. I am trying to speak to the neurologist on the phone.
Still no neurologist appointment and no PET scan and therefore no diagnosis yet. I saw my daughter for the first time face to face yesterday outside the ward. She is now off the antipsychotics and her speech has improved but her speech is very mechanical. Like she has autism. Does this sound like a symptom of dementia? Also she doesnt smile anymore and she had a smiley face all the time. Is this a symptom too?
 

Sarasa

Volunteer Host
Apr 13, 2018
3,518
0
So sorry to hear about your daughter @Lynne K , and the fact you are no further forward with a diagnosis. I'm not sure if it is a recognised symptom of dementia or not but my mother's speech, although quite fluent, began to sound as though she was someone speaking a foreign language that she once knew well, but hadn't spoken for a while. I could feel that she was thinking carefully for the next word. My mother has vascular dementia btw.
I hope you can get a diagnosis soon
 

canary

Registered User
Feb 25, 2014
15,516
0
South coast
PET scans are often used to see whether or not it is Frontotemporal Dementia (FTD) and the sort of things you are seeing - lack of emotion, difficulty with speech - can be symptoms of frontal lobe damage, so I guess that the doctors are looking for FTD.

As one of OHs consultants said, though "just because someone has all the symptoms, it doesnt mean thats what theyve got"
 

Lynne K

New member
Mar 5, 2021
6
0
Its
So sorry to hear about your daughter @Lynne K , and the fact you are no further forward with a diagnosis. I'm not sure if it is a recognised symptom of dementia or not but my mother's speech, although quite fluent, began to sound as though she was someone speaking a foreign language that she once knew well, but hadn't spoken for a while. I could feel that she was thinking carefully for the next word. My mother has vascular dementia btw.
I hope you can get a diagnosis soon
Its nearly two weeks since she came off the antipsychotics so may be the quality of her speech will improve over the next few weeks. Its very hard watching someone so young be so poorly. Thank you for your support.
 

Lynne K

New member
Mar 5, 2021
6
0
FTD has been mentioned but we just need a diagnosis. She has been in hospital for a year next week and been treated for something we now know she doesnt have.
PET scans are often used to see whether or not it is Frontotemporal Dementia (FTD) and the sort of things you are seeing - lack of emotion, difficulty with speech - can be symptoms of frontal lobe damage, so I guess that the doctors are looking for FTD.

As one of OHs consultants said, though "just because someone has all the symptoms, it doesnt mean thats what theyve got"
 

Thomasina

Registered User
Jun 10, 2020
13
0
Hi,
I'm posting this not really because I have a question but because I'm just seeking support.
My mum, 55, has recently been diagnosed with Alzheimer's disease. Unfortunately she is extremely ill and presenting as if she's in the later stages of the disease. She can no longer walk, talk, and is losing the ability to swallow, so isn't eating or drinking.
The consultants have explained how delirium (caused by UTIs) is also contributing to the severity of the symptoms.
We were preparing for her to be taken into the care system soon but whilst she's on a drip to give her fluids, she must stay in hospital. We've also been told that they won't resuscitate if her heart stops. We have been told that she potentially only has a few months if she continues the way she is.

I just wanted to know if anyone else has experienced such a rapid progression of the disease? Mum only started experiencing memory issues in the first lockdown (around April 2020) and now has been receiving 24h care since Jan 2021.
This has all happened so fast. I feel as though my mum has been snached from me bit by bit and I'm unsure of how my life will be without her.
Thank you for reading.
A difficult time for you. It is good to have this forum. I hope things improve.
 

Pots and Pans

Registered User
Jan 13, 2020
93
0
Are you able to visit? Help with the offered meals? Staff in many wards could be overworked due to ongoing Covid issues so no one helping with food and fluids to the extent they would have when HCAs and visitors and volunteers all available. The drip might be needed simply cos no one available to help with drinking as it is so time- intensive. This was my experience when my OH went into hospital with mild cognitive issues during lockdown last year for a fracture, got post-op delerium and came out a week later a severely ill and confused man. Very dehydrated, unable to swallow or hold a cup by himself. With lots of help at home - including live-in care for some time - he did improve a lot ( we eat out in pubs now) and I just feel they simply did not have the time on the orthopedic ward to give the help he needed. I couldn't go in at all during his stay but if you can, it might help a lot.
My experience of course may be very different. Different time (1st lockdown) and different hospital so I do hope you have full confidence in the hospital and are already able to be with your mother. I do hope she improves. Feel for you as one feels so helpless when a loved one in hospital.