What stage are we at?

Cap'n Grimm

Registered User
Feb 6, 2019
15
Hello there!

So this would be my first time posting here. Im a little hesitant joining in for fear of saying something that may identify me to someone in my family who may or may not use this forum. I couldn't possibly know for sure if they do. But a healthy dose of paranoia keeps us all eternally vigilant. So I will try and be as vague as possible.

I'm a young male who cares full time for his mother who has dementia. A job that I'm often told I'm not capable of doing, but happily left to do anyway. The sort of thing that causes family tensions. But thats it's own long story. Rest assured that I do the job to the best of my ability and am fully committed to doing this and seeing it through to the end.

I guess the reason I'm here is to ask questions that will help me gauge where we are at in the process. Lately I've been feeling like things are changing with my mothers mental and physical state and I'm wondering if we are approaching the end game or how far off that might be?

She was diagnosed maybe a couple of years ago? I find it hard to keep a timeline of events in my head. But she'd definitely been suffering the effects of dementia for maybe four or five years prior to her diagnosis. Currently she's doubly incontinent and unable to clean herself up. She might attempt to make herself a cup of tea, but she can't really remember all the necessary steps. She certainly couldn't prepare herself a meal. Her mobility is not great. She has that characteristic shuffle and a short walk to the shops and back is enough to exhaust her to the point of falling over. She has trouble sitting down and she has trouble standing up without assistance. She's showing signs of dysphagia and sometimes struggles to swallow her food.

Mentally she's not in great shape either. She reads a lot but I don't think she's able to extract much meaning from the words anymore. She's unsociable and barely attempts to communicate with people, although she still displays a strong empathy towards others she perceives as suffering in some way and also maintains a good sense of humour. Conversation is limit and often non sensical. Her ability to remember who I am is also declining.

My mother isn't on any form of medication. But reading through these forums it seems that a lot of people are. I find that disconcerting. Is this something I should look into perhaps? I asked the doctor about medication before, but they seemed disinclined towards prescribing anything. To be honest I've had cause to doubt hers doctors involvement lately and I'm wondering if maybe I should seek an alternative.

Im not sure if thats much information for someone to give me an opinion on. But as I say, I don't want to say anything that may identify to people who know me who may or may not be looking here. The politics of family is an ugly business that I have no time for.

I'm a realist. I know that come the end things will be bad. But if I'm not prepared physically, and more importantly, mentally, then I might fail. So to all of you who are experienced in this business feel free to offer an opinion on where we are at, what I can expect, signs to look out for. Give me the hard truths, cause the more I know the better prepared I can be.

if anyone has questions then feel free to ask. I'll do my best to answer.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,558
leicester
Hello @Cap'n Grimm and a warm welcome to TP
I hope you haven’t left yourself open to be identified, I would think you are fine.
Medication for dementia will not cure, but only slow down the progression of the dementia.
As you have a lot of questions I wonder if a good place to start is with the Alzheimer’s society fact sheets
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

I hope now you have found us you will continue to post
 

margherita

Registered User
May 30, 2017
2,473
Italy, Milan and Acqui Terme
Hi @Cap'n Grimm ,
You sound so lonely.
Loneliness makes our lives as carers worse.
Despite your precise and detailed description of your mum's situation, I suppose no one can tell you what is likely to happen and, above all, when.
I think , instead, most TPers will suggest you ask for help.
I do not live in the UK, I can't help you, I'm sorry.
Hope you keep posting and get the support you need
 
Last edited:

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
To be honest it sounds like your mum is in the later stages of this dreadful disease, but having said that, from experience, each stage can go on for quite some time. Everybody is different as literally every BODY is different in how they cope with all that this disease brings with it. It sounds like you are doing a great job with caring for her and I hope you can continue this for as long as possible. You will know when it is beyond you and you need to seek extra help.
 

kindred

Registered User
Apr 8, 2018
2,341
Hello there!

So this would be my first time posting here. Im a little hesitant joining in for fear of saying something that may identify me to someone in my family who may or may not use this forum. I couldn't possibly know for sure if they do. But a healthy dose of paranoia keeps us all eternally vigilant. So I will try and be as vague as possible.

I'm a young male who cares full time for his mother who has dementia. A job that I'm often told I'm not capable of doing, but happily left to do anyway. The sort of thing that causes family tensions. But thats it's own long story. Rest assured that I do the job to the best of my ability and am fully committed to doing this and seeing it through to the end.

I guess the reason I'm here is to ask questions that will help me gauge where we are at in the process. Lately I've been feeling like things are changing with my mothers mental and physical state and I'm wondering if we are approaching the end game or how far off that might be?

She was diagnosed maybe a couple of years ago? I find it hard to keep a timeline of events in my head. But she'd definitely been suffering the effects of dementia for maybe four or five years prior to her diagnosis. Currently she's doubly incontinent and unable to clean herself up. She might attempt to make herself a cup of tea, but she can't really remember all the necessary steps. She certainly couldn't prepare herself a meal. Her mobility is not great. She has that characteristic shuffle and a short walk to the shops and back is enough to exhaust her to the point of falling over. She has trouble sitting down and she has trouble standing up without assistance. She's showing signs of dysphagia and sometimes struggles to swallow her food.

Mentally she's not in great shape either. She reads a lot but I don't think she's able to extract much meaning from the words anymore. She's unsociable and barely attempts to communicate with people, although she still displays a strong empathy towards others she perceives as suffering in some way and also maintains a good sense of humour. Conversation is limit and often non sensical. Her ability to remember who I am is also declining.

My mother isn't on any form of medication. But reading through these forums it seems that a lot of people are. I find that disconcerting. Is this something I should look into perhaps? I asked the doctor about medication before, but they seemed disinclined towards prescribing anything. To be honest I've had cause to doubt hers doctors involvement lately and I'm wondering if maybe I should seek an alternative.

Im not sure if thats much information for someone to give me an opinion on. But as I say, I don't want to say anything that may identify to people who know me who may or may not be looking here. The politics of family is an ugly business that I have no time for.

I'm a realist. I know that come the end things will be bad. But if I'm not prepared physically, and more importantly, mentally, then I might fail. So to all of you who are experienced in this business feel free to offer an opinion on where we are at, what I can expect, signs to look out for. Give me the hard truths, cause the more I know the better prepared I can be.

if anyone has questions then feel free to ask. I'll do my best to answer.
Me again, with a little more time. It's very difficult to say what stage someone is at because the stages seem to overlap. For example, my husband cannot do anything at all for himself, cannot really move, cannot stand up. All that would signify end stage, but he can still talk and interact, even though it makes no sense. So I don't know either. Things don't always have to be bad at the end. I am most days in my husband's nursing home and there have been some very gentle, what you might call good deaths. I so so admire your attitude and people on here will help you all they can.
with warmest wishes, Kindred.
 

mickeyplum

Registered User
Feb 22, 2018
119
Hello there!

So this would be my first time posting here. Im a little hesitant joining in for fear of saying something that may identify me to someone in my family who may or may not use this forum. I couldn't possibly know for sure if they do. But a healthy dose of paranoia keeps us all eternally vigilant. So I will try and be as vague as possible.

I'm a young male who cares full time for his mother who has dementia. A job that I'm often told I'm not capable of doing, but happily left to do anyway. The sort of thing that causes family tensions. But thats it's own long story. Rest assured that I do the job to the best of my ability and am fully committed to doing this and seeing it through to the end.

I guess the reason I'm here is to ask questions that will help me gauge where we are at in the process. Lately I've been feeling like things are changing with my mothers mental and physical state and I'm wondering if we are approaching the end game or how far off that might be?

She was diagnosed maybe a couple of years ago? I find it hard to keep a timeline of events in my head. But she'd definitely been suffering the effects of dementia for maybe four or five years prior to her diagnosis. Currently she's doubly incontinent and unable to clean herself up. She might attempt to make herself a cup of tea, but she can't really remember all the necessary steps. She certainly couldn't prepare herself a meal. Her mobility is not great. She has that characteristic shuffle and a short walk to the shops and back is enough to exhaust her to the point of falling over. She has trouble sitting down and she has trouble standing up without assistance. She's showing signs of dysphagia and sometimes struggles to swallow her food.

Mentally she's not in great shape either. She reads a lot but I don't think she's able to extract much meaning from the words anymore. She's unsociable and barely attempts to communicate with people, although she still displays a strong empathy towards others she perceives as suffering in some way and also maintains a good sense of humour. Conversation is limit and often non sensical. Her ability to remember who I am is also declining.

My mother isn't on any form of medication. But reading through these forums it seems that a lot of people are. I find that disconcerting. Is this something I should look into perhaps? I asked the doctor about medication before, but they seemed disinclined towards prescribing anything. To be honest I've had cause to doubt hers doctors involvement lately and I'm wondering if maybe I should seek an alternative.

Im not sure if thats much information for someone to give me an opinion on. But as I say, I don't want to say anything that may identify to people who know me who may or may not be looking here. The politics of family is an ugly business that I have no time for.

I'm a realist. I know that come the end things will be bad. But if I'm not prepared physically, and more importantly, mentally, then I might fail. So to all of you who are experienced in this business feel free to offer an opinion on where we are at, what I can expect, signs to look out for. Give me the hard truths, cause the more I know the better prepared I can be.

if anyone has questions then feel free to ask. I'll do my best to answer.
Hello @Cap'n Grimm and a warm welcome to TP
I hope you haven’t left yourself open to be identified, I would think you are fine.
Medication for dementia will not cure, but only slow down the progression of the dementia.
As you have a lot of questions I wonder if a good place to start is with the Alzheimer’s society fact sheets
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

You sound like you are doing a great job in very difficult circumstances and deserve a pat on the back from all us fellow carers. As stated, you will find lots of support from various sources on Tipping Point, but I would just like to say that not everyone with dementia is on medication. My husband has not been prescribed anything. Get a second opinion if it will reassure you but I'm sure your mum's doctor would have already considered it. Your mum is so lucky to have such a caring son.
 

karaokePete

Registered User
Jul 23, 2017
5,110
N Ireland
Hello and welcome from me too @Cap'n Grimm.

I wonder if you may find any local support services to be of some use. You can do a post code check to see what's available to you by following this link https://www.alzheimers.org.uk/find-support-near-you

I see you have been given a link to the publications list and that is a good place to do research as 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

If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

I not your comments about medication and the current GP.

With medication the drugs available at the moment are primarily geared towards dementia caused by Alzheimer's. I don't know the cause of the dementia in your mother's case but might this be why they aren't offered. I have read of the pills being given for other types of dementia but a GP may, perhaps, not want to prescribe them without an instruction from the Memory Clinic.

As to the GP, it's a truth that some may be better than others with dementia due to the non specialist nature of their training and lack of personal experience. Maybe there's an alternative GP at the same surgery that you could try.

As has already been mentioned, the stages of dementia are both individual to the person and fluid/overlapping in nature. There is a Factsheet about the stages and many members find great accuracy in the way they are outlined on the site that can be located with this link https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/. Although there are many different causes/types of dementia they all tend to become somewhat similar as the brain pathology spreads into more areas as time goes by.
 

Sirena

Registered User
Feb 27, 2018
2,065
Hello Cap'n, as others have said it is difficult to know exactly what stage someone is at, as the stages overlap and differ for each individual. My mother has a lot of similarities to yours (she is in a care home) but she is still just about continent and reasonably mobile although of course she only potters around the care home. She can read out paragraphs from a magazine but I don't think she understands the meaning, and conversations are as you say nonsensical.

My mother has Alzheimers but she is on no medication. She was considered for memantine but after a year of faffing about (doing various tests on her heart/blood pressure) the doctors decided it wouldn't really be of any benefit.
 

charlie10

Registered User
Dec 20, 2018
395
@Cap'n Grimm welcome to the forum, I'm pretty new too but people have been so kind and helpful. My pwd hasn't been diagnosed so I can't help much with your questions.....3 weeks ago we were wondering if he just had Mild Cog Impairment, then some information about his behaviour a week ago makes us suspect he might be in middle stage (we live overseas so rely on phone calls to pwd and whatever info our nearest family member passes on....not ideal). However it rang a bell when you said about the importance of being prepared, as this is what I struggle with. We go thro all possible scenarios and I spend hours a day researching solutions for things that may never happen, but if they do we can offer immediate advice to the 'person on the ground' who is also trying to keep his job.....that seems to be the best help we can offer. I hope that thro advice from the forum you can access more help and support with your mum.....I really admire how you've stepped up for her, and if you're also dealing with family who aren't on the same page it must make everything so hard.....I reckon paranoia comes with the job! Don't forget to look after yourself too, as much as you are able to
 

Cap'n Grimm

Registered User
Feb 6, 2019
15
Thank you all for your replies. I appreciate that dementia is a very individualised disease and it’s would be close to impossible to make accurate assessments of someone’s condition based on a mere forum post

It would seem that in my mother’s particular instance medication might not be an appropriate course of action. With the majority of what’s available targeted towards Alzheimer’s it would probably serve little purpose.

As for support, I am in touch with people from the Alzheimer’s society and other charitable organisations. I tend towards being too self reliant for my own good at times..but I certainly wouldn’t be foolish enough to be without a “Plan B” should something unforeseen happen to me.

And @margherita please don’t worry that I might be lonely. It’s true that caring for someone can be an isolating experience. But I have good friends. I couldn’t honestly ask for better.
 

MegMog10

Registered User
Feb 4, 2019
13
Hello Cap'n Grimm. I wonder, for us carers, how much ignorance is somehow a bit of bliss? When my Nan passed away in the early 90s she had been diagnosed with Alzheimer's for some years and was living in a residential home. She had a fall and broke her hip. She must have been in fairly advanced stages and because she didn't have the mental capacity to learn to walk again she was given an operation to make her comfortable and the hospital doctor told us she probably wouldn't come out of hospital and was likely to succumb to pneumonia within ten weeks. Low and behold, his prediction was correct. I'm relaying this because, fast forward to now and waiting for a diagnosis for my mum, I remember being told very little about the stages of dementia when my Nan had it. We knew she was getting progressively worse, but the stages were not spelled out with such frightening clarity. It is a very hard read to see in black and white what the progressive stages of Alzheimer's are. I suspect Mum also may have it, and I've read all the stages in order to prepare myself, but it's terrified me at the same time. In some ways I wish I hadn't read them.

I don't think my Nan was totally at phase 7 when she passed away, I don't remember her not being able to hold her head up or not be able to swallow, or her limbs being very taut. But she did have a very harrowed look about her, unless she recognised us, whereby she would break into a relieved smile. The recognition was such a lovely feeing. I will never forget my Little Nan and miss her to this day. She was too ill to come to my Wedding in 1994 so the following day we brought her home and all got dressed up again in our finery and had photos taken with her. She passed away four months later and I had the privilege of being with her as she passed x
 

Cap'n Grimm

Registered User
Feb 6, 2019
15
Hello Cap'n Grimm. I wonder, for us carers, how much ignorance is somehow a bit of bliss? When my Nan passed away in the early 90s she had been diagnosed with Alzheimer's for some years and was living in a residential home. She had a fall and broke her hip. She must have been in fairly advanced stages and because she didn't have the mental capacity to learn to walk again she was given an operation to make her comfortable and the hospital doctor told us she probably wouldn't come out of hospital and was likely to succumb to pneumonia within ten weeks. Low and behold, his prediction was correct. I'm relaying this because, fast forward to now and waiting for a diagnosis for my mum, I remember being told very little about the stages of dementia when my Nan had it. We knew she was getting progressively worse, but the stages were not spelled out with such frightening clarity. It is a very hard read to see in black and white what the progressive stages of Alzheimer's are. I suspect Mum also may have it, and I've read all the stages in order to prepare myself, but it's terrified me at the same time. In some ways I wish I hadn't read them.

I don't think my Nan was totally at phase 7 when she passed away, I don't remember her not being able to hold her head up or not be able to swallow, or her limbs being very taut. But she did have a very harrowed look about her, unless she recognised us, whereby she would break into a relieved smile. The recognition was such a lovely feeing. I will never forget my Little Nan and miss her to this day. She was too ill to come to my Wedding in 1994 so the following day we brought her home and all got dressed up again in our finery and had photos taken with her. She passed away four months later and I had the privilege of being with her as she passed x
It's regrettably the case that due to my own ignorance I now find myself in my current situation. Had I known my dad was terminally ill I never would have left it to him to take on the role of caring for mum. He was stubborn though. And it's probably true that things couldn't be any different than they are now. To go through that and not learn anything would be to condemn mum to an unnecessarily bad end. And as terrifying as the truth might be, it's probably way more preferable than guilt.

So for myself I think it's far better to have a picture of what the future holds for my mum. To be better prepared to make the right decisions.
 

MegMog10

Registered User
Feb 4, 2019
13
It's regrettably the case that due to my own ignorance I now find myself in my current situation. Had I known my dad was terminally ill I never would have left it to him to take on the role of caring for mum. He was stubborn though. And it's probably true that things couldn't be any different than they are now. To go through that and not learn anything would be to condemn mum to an unnecessarily bad end. And as terrifying as the truth might be, it's probably way more preferable than guilt.

So for myself I think it's far better to have a picture of what the future holds for my mum. To be better prepared to make the right decisions.
You are right of course. It's something we all have to face up to sadly. Having got the results of Mum's memory test a couple of days ago where she scored 55 (quite a significant drop in just over a year from her last test) I am just having a really hard time coming to terms with it at the moment.