Mapping the Carer Journey - diagnosis to death

[TheCoachman]

Hi - this is a call out to find out if anyone has come across a good OVERVIEW DIAGRAM / DOCUMENTS (s) for a new carer - spelling out what is LIKELY, POSSIBLE AND PROBABLE if you are supporting a person with dementia until their death?

There is tons of info out there (factsheets / advisors / books etc) but I can’t find anything CLEAR and SIMPLE that spells out the possible / probable symptoms and behaviours a Carer may / will have to meet WHILE accompanying / supporting the person with dementia on their full journey through dementia to death.

It is hard enough being a carer without having to search out yet another factsheet or wade through all those books - (each giving little snippets of information) or wade through all the local info about organisations that no longer exist, don’t answer the phone or have massive waiting lists. The online profiles I found for carers are relentlessly positive and in my experience do not reflect what is for most of us reality.

I am sole carer for my mum who is 93, early stage and given that she has few health issues other than sensory impairments (sight & hearing) she will most probably die of Dementia (now the most common UK cause of death).

Knowing she will become incontinent (oh what a surprise there is a LA service that no one told me about) knowing she will most likely start sundowning, knowing she will become increasingly agitated and confused, that she will not remember to take her medication or overtake it, that at some point she will have to ACCEPT professional carers in her home or go into residential care (And I will have to battle over this / organise it) no one in the support agencies talked me through what is likely to be ahead for me as carer or provided succinct guidance on all those preparations I could make. (yes I do know that each person with dementia has a personal story / path and that SOME things (the inevitable crises and emergencies) cannot be planned for).

Personally it feels that advisors hold back from spelling out (verbally or in writing) what a carer is getting into and the likely journey ahead and prefer to guide on the day to day issues and to reassure (“sounds like you are doing a wonderful job”)…to avoid frightening us with the truth ? Or on the basis that once you go down the rabbit hole of caring you are stuck and in it to the end (death).

Sorry long post but so far no agency I approached seems to have addressed my need and I am finding it hugely time consuming and stressful having to find information / sort things out in the middle of yet another crisis - when with more information insight and planning it would have been much less stressful and enabled me to be more centred on the person I care for.

PS I am daily very moved and touched by all the amazing caring shared in this forum - so much fortitude and peer support - I just wish didn’t feel that we as carers are often having to find our way in the dark
Pete

 

[DeeCee7]

There is no blueprint for life, for parenthood, for dealing with grief, and certainly none for dementia. As you acknowledge @TheCoachman , you are already aware of what might be ahead but as humans we are all different and no two paths through dementia are the same. The only certainty is that today will be the best it will ever be. I think most carers concentrate on the now. And as you say, seek help and support from fellow members. Real experience is worth It’s weight in gold. I wish you well with caring fir your mum. One of the best pieces of advice I have read on here is get support for both you and her before you think you need it.

 

[canary]

I don't think there is anything and it would be difficult to see how anything could cover all eventualities.

I think the big problem is the lack of support, especially for carers, and general lack of information and understanding about dementia. Doctors, SS etc seem to only look at the person with dementia and not consider the affect it has on the carer. Advice about dementia therefore seems to revolve around not frightening the person with dementia and is IMO unremittingly (and unrealistically) positive.

This means that the perception of the general public about dementia is also positive and the dark side of dementia is almost never talked about. Attempts to educate about dementia and highlight the challenges of caring for someone with dementia are often accompanied by complaints within the dementia community itself - from people with dementia who become upset and also their carers who are trying to protect them.

All of this means that there is no incentive to change things. The politicians who hold the purse strings to pay for support don't want to pay as there are very few votes attached to it because the general population cannot see the problem and medical and social services are only looking at the person with dementia.

I'm afraid that I have become very disillusioned and cynical about the possibility of change

 

[sue31]

Hi - this is a call out to find out if anyone has come across a good OVERVIEW DIAGRAM / DOCUMENTS (s) for a new carer - spelling out what is LIKELY, POSSIBLE AND PROBABLE if you are supporting a person with dementia until their death?

There is tons of info out there (factsheets / advisors / books etc) but I can’t find anything CLEAR and SIMPLE that spells out the possible / probable symptoms and behaviours a Carer may / will have to meet WHILE accompanying / supporting the person with dementia on their full journey through dementia to death.

It is hard enough being a carer without having to search out yet another factsheet or wade through all those books - (each giving little snippets of information) or wade through all the local info about organisations that no longer exist, don’t answer the phone or have massive waiting lists. The online profiles I found for carers are relentlessly positive and in my experience do not reflect what is for most of us reality.

I am sole carer for my mum who is 93, early stage and given that she has few health issues other than sensory impairments (sight & hearing) she will most probably die of Dementia (now the most common UK cause of death).

Knowing she will become incontinent (oh what a surprise there is a LA service that no one told me about) knowing she will most likely start sundowning, knowing she will become increasingly agitated and confused, that she will not remember to take her medication or overtake it, that at some point she will have to ACCEPT professional carers in her home or go into residential care (And I will have to battle over this / organise it) no one in the support agencies talked me through what is likely to be ahead for me as carer or provided succinct guidance on all those preparations I could make. (yes I do know that each person with dementia has a personal story / path and that SOME things (the inevitable crises and emergencies) cannot be planned for).

Personally it feels that advisors hold back from spelling out (verbally or in writing) what a carer is getting into and the likely journey ahead and prefer to guide on the day to day issues and to reassure (“sounds like you are doing a wonderful job”)…to avoid frightening us with the truth ? Or on the basis that once you go down the rabbit hole of caring you are stuck and in it to the end (death).

Sorry long post but so far no agency I approached seems to have addressed my need and I am finding it hugely time consuming and stressful having to find information / sort things out in the middle of yet another crisis - when with more information insight and planning it would have been much less stressful and enabled me to be more centred on the person I care for.

PS I am daily very moved and touched by all the amazing caring shared in this forum - so much fortitude and peer support - I just wish didn’t feel that we as carers are often having to find our way in the dark
Pete

Agree there was no ‘possibility of’ documents available when we started the caring role. Infact some of the ‘professionals’ I’ve come across have not got a clue on some of the issues that arise, which was shocking.
One of my brothers didn’t believe the problems we had with mum as he had witnessed his MIL with totally different needs. She was a compliant, silent, wheelchair/bed bound victim after a very short time suffering with memory issues.
Therefore he refused to help with his own mother. Because she was a ‘difficult’ sufferer. Totally ashamed of him!
All I can say is read as many posts on here as you can, the honesty & support is amazing.
Available care is a bit of a postcode lottery so be prepared to be a strong advocate, stand your ground to get what you & your mum will need going forward.

 

[Neveradullday!]

I've removed the link in this post because it's too grim!
Just take one day at a time is my advice.

 

[Bod]

@coachman
For the information you are looking for, this forum is probably the best place to find it.
Bear in mind, every dementia path is individual, what one suffers many do not.
Get Lasting Power of Attorney, for both Health and finance in place now. If you can do this as a sole attorney it can avoid problems from joint attorneys, BUT you will get "advice" from other family/friends who see thing differently.
The most common phases seem to be.
Dislike of bathing/showering.
Refusal to change clothes, sleeping in day clothes, dirty clothes.
"There is NOTHING wrong with me, I'm managing just fine!"
"I want to go home" often thought to be a place where they felt safe, childhood home etc.
Change of food likes, developing a very sweet tooth, refusing savory food.
"Phases" is the best way of describing the above, how long is a piece of string? is how long a phase may last, the phases will overlap, some may be serious, other just a short blip.
Get the person used to people coming into the house as soon as you can, whether or not you need the help. Cleaners/gardners, all help to transition to personal Carers.
Also get "Respite" care going early, you will need it later, so if the person is used to it, alot of "discussion/arguments" are avoided.

Bod
(Who's been through it with father and both inlaws.)

 

[SherwoodSue]

Here’s a random thought. If such a guide was available what would it actually do for you? I used to think of I thoroughly researched something I could prepare myself for it. In reality I just imported sad feeling from a future tense life relating to things which may or may not happen.

Example. My lovely dad diagnosed with terminal bowel cancer. I should have stopped there and then and just bawled my eyes out. No. I could have given a presentation on end of life bowel cancer such was my level of research; had decided just how mum and I would care for him at home. Imagined where we would put the loaned hospital bed etc
Dearest dad fell over broke his hip and died on a surgical ward. Never saw that coming.

I think we want facts , an illusion of control

Just that an illusion. Every journey is different. All have their difficult elements which affect different people in different ways. I now ask myself even if we knew EXACTLY what was happening would even one ounce of loss be spared. I think not.

I now stay in the moment. No aggression yet No incontinence yet. Today mum is safe. Today mum knows she is loved.

This is just how I cope with a lack of mapped journey.

Warmest wishes

 

[SAP]

Carers having to find their way in the dark has been the cry for many many years. Having work in Carers Support, the complete lack of joined up thinking is appalling as time and again families struggle with getting just the basic info they need. If you have a carers centre near you, they should be able to offer you some support and advice ,may have produced leaflets for various conditions and you should be able to talk with other carers who have been through similar experience. There is also a lot of information on the Alzheimer’s Society pages about each step and where to get help.
I totally agree that at the point of diagnosis, carers should be given information about all the areas they are likely to need info on like LPA,the incontinence team, carers assessments. Etc. Some memory clinics are better than others, some GPs surgeries have no clue about dementia and some local authorities are no help whatsoever. There needs to be a complete and comprehensive overhaul of the system . Sadly, until dementia is seen as a disease and not a social care issue this is unlikely to happen.

 

[TheCoachman]

Many thanks for all your responses so far - I won't give up on working to make things better than I find them. All your points are valid though I don't go with the idea that we are totally out of control as carers and that we just have to cope with whatever as it arises - some things should be planned for and some things cannot be anticipated and must be dealt with as they arise. Please note my use of the words 'possibly ' and 'probably' - respecting that journeys are individual but that there are also commonalities.

I don't believe in a rather fatalistic outlook or just accepting being stuck with the role or accepting being overwhelmed - I would like to develop much better clarity at the outset (for those who would like to face the total reality) I'm thinking of what I needed to know as a complete OVERVIEW instead of being stuck in the navigation nightmare and the referral go round.. in other words the picture someone might like to have of what they might / are likely to face . Yes no one is going to make things dead easy for us .. perhaps we can do more together for ourselves?

E.g. "Now that you have DECIDED to be a carer for someone with Dementia ... here is what that may mean for you and the person you care for .." that's the overview I shall keep working on.


I will have to employ people to support my mum with her needs and to do so in a sensitive and rational way - without going all 'round the houses' to do so.

NB I do understand the need not to upset those (carers or people with Dementia) who would rather not think about what is ahead (my mother is in complete denial) .., but there are also carers and people with Dementia who want to understand, make plans, face reality ...it's an individual choice.


Best wishes to you all in looking out for / after yourselves and for those you care for
Peter

 

[SAP]

@TheCoachman , just to add that I am aware of someone who has set up an app for dementia carers that covers all the stuff discussed on here.She is running this as a proper business and has secured funding as a new set up. So there is some work being done, it just needs to be communicated ( I think this is for local use not nationwide but it’s a start)

 

[Dunroamin]

@TheCoachman - yes I agree, but as with all things dementia, funding is the stumbling block. There is also the problem that all areas have little (and dwindling) provision with short term funds and no long term strategy. If such a 'blueprint' could be developed, content will be out of date within weeks, adding to frustrations for carers and the PWD alike. I am living in an area where SS funding is being pulled from virtually everything

When i was diagnosed I had a working knowledge of the NHS and SS and was able to navigate the systems. God only knows how those without this insight go on.

 

[GeorgieW]

E.g. "Now that you have DECIDED to be a carer for someone with Dementia ... here is what that may mean for you and the person you care for .." that's the overview I shall keep working on.

This made me smile. I did not decide to be come a carer for the woman that gave birth to me, circumstances dictated and a promise was made that ensured my hands were tied and that my conscious will be clear.

I think your on the right track, a blue print of at beginning you need LPA's etc, and what actually is available out there and where to start with etc, but your are effectively trying to distil the hundreds of posts on here and the 100's of years of experience from all the authors on here. the 1000's of youtube videos and the plethora of guides out there.

What I really would like - and its the same as parents of small children - is a mute or pause button

 

[Kevinl]

In answer to the question on post one where this topic started "to expect what is likely, possible or probable" expect the unexpected would be my answer.
My experience my wife with early onset, mixed, atypical AZ was nothing like mum who had a mild to moderate cognitive impairment.
I've been here too long with wife and mum (now both deceased), since 2013 and with something over 6.5 thousand posts let alone the topics I've started too and I'm no expert yet, no two people are the same and as carers we all have different lifestyles, ages, abilities and expectations.
Be one big job condensing down all our different circumstances into a pathway format.
I hate posting in a negative way and I do wish you the very best of luck and hope it does work but I'm not holding my breath.
The site which is now Dementia was originally Alzheimer's, however, all the varieties of dementia can come with different issues, behavioural traits and so on. Good luck and as I say sorry to sound so negative. K