Does anyone else have experience of caring for a loved one or partner?
Yes.
I cared for my mother - who had vascular dementia - for the best part of a decade until her death, in her own bed, in her own bedroom, in our home, with the three of us - her three children, my two brothers and I - holding her hands - just before midnight on the night of 21st December 2018.
For several years now I have been my mothers main carer, she has vascular dementia and COPD, among other things. Some time ago when she was well, she was my carer when I had serious mental health problems. For the moment we are getting by ok, just. I can manage here at home, but if she does get significantly worse she may need to go into a full time care home. I know she would hate this.
I hear you.
The difficult thing is knowing that she won’t get better, she will just get worse until one of the problems kills her. I wish I could make her well again, but that’s not possible.
This feeling, - and frustration - I very well remember.
I really don’t know what will be the biggest problem first, her breathing or the dementia.
The dementia.
Unless she suffers from a (pre-existing) physical condition that involves her lungs (and compromises her breathing) - which is entirely separate from dementia - this will not - ought not be a problem until the very very end, when pneumonia seems to be - and, very often is - one of the conditions to which people who suffer from advanced dementia may be prone.
At any time now something could go badly wrong. I get by, by taking it one day at a time and not thinking about the future too much.
Taking it one day at a time is all that you can do, and all that you can ask of yourself.
It can be very difficult at times, but it is a privilege to care for her, she has always been such a lovely person.
Again, I hear you, and can only empathise with you.
Have you been in a similar situation?
The first thing I wish to say (write?) to you is that you have my profound sympathy.
This is a heart-breaking and soul-destroying and emotionally exhausting and physically draining condition to have to deal with.
If someone had told me in 2012 (which is when my mother was formally diagnosed, although she had been deteriorating for a few years immediately preceding that) what we could expect to face, I think I would have wanted to crawl under a rock and hoped to hibernate for at least a decade.
A few words of advice, hewn from that rock, the school of life, informed by my experiences:
1: This is A Marathon, not A Sprint.
I cannot stress this enough - this is a marathon, not a sprint: You will need to pace yourself, try to take time and space for yourself, (and I know - having "been there, done that, bought and worn the proverbial t-shirt" - I know all too well that you will wish to give everything of yourself to try to assist the person whom you love when and while they are assailed by this condition in order to ameliorate their lot).
This is a marathon that can run for a decade or longer, not a broken ankle or some other surgery that will heal in weeks, or months, after which, you can withdraw and return to your own life.
However, I mean this, - the advice to pace yourself intelligently, not to subsume yourself entirely (and that will be exceptionally difficult) in the needs of the person to be cared for.
This is because, if you do not pace yourself intelligently, you will burn out, and carer burnout is one of the main reasons (night time wandering - the so-called "sun-downing" - leading to loss of sleep for the carer as they have to be alert all of the time - is another, and violence, is a third) - anyway, carer burnout is one of the reasons why people with dementia end up in care homes.
2: New Normal:
Recognise that, from now on, your life (professional, perhaps, but above all, personal), will change (I found this extremely difficult to accept), and will be utterly transformed, as the needs of the person to be cared for will not only take a prominent position in your life, but will come to dominate it completely, leaching into, pouring into, seeping into, almost all considerations and conversations.
This is a New Normal, the world of caring for someone with dementia.
In the last few years of my mother's life, there were a few occasions where my brothers and I would set out a specific period of a few hours - perhaps, meet in a pub - where we would deliberately decide - have decided in advance - to discuss anything except my mother (and we all adored her) and her care needs.
However, there is no shame in being angry, (raging, in fact), stressed, exhausted, distressed, frustrated, (people with dementia can sometimes be very trying) upset and admitting this.
You are a carer, and you are doing your best, you are not auditioning for sainthood.
3: Learn to accept that which is not perfect. You are not perfect. What is good is not the enemy of what is the very best.
This is where - despite your own desires, (which means that you will wish to give the very best of care for your mother) which, when you fall short of perfection, and you will fall short, far short, of perfection - you will need to learn to accept that "the best", is not "perfection" (and do not berate or punish yourself for falling short of perfection), but "my best", the very best of what you can do - physically, psychologically, emotionally and mentally.
4: Prioritise and Prune:
Prioritise (and try to do) what can be done by you and those close to you, and delegate - or bribe, bully, buy - what you cannot.
And jettison - or forego, or ruthlessly prune - that which is irrelevant, or unimportant, be they tasks or people. You cannot do everything, which means that some things (and/or people) may well need to be let go.
Don't be afraid to ask for help, but, ask within reason.
More important, don't be afraid, (or too proud) to accept (genuine) offers of help, and (informed) advice (the sort that comes with experience).
Some people will say "phone me if you need anything", and - in my experience (with the caveat or exception of unless you know the person in question exceedingly well, and thus, know the offer to be genuine)- these offers are both useless and worthless.
What is "anything"? You will be afraid to take (or be thought to take) advantage of the person making the offer, or to ask for 'too much', which means, in practice, that you will ask for nothing.
Far better is someone (who will - almost inevitably and invariably - have lived through a similar experience and thus, will have known what it is to do so) - who will say something along the lines of "I'm heading to the pharmacy/shop/town - is there anything you need"? "I'm heading to the bottle bank, do you want me to take your empty bottles and dispose of them?" "Can I run you anywhere?" "I'll sit with your mother for an hour or two, while you head out for a coffee/walk/visit to a bookshop?")- in other words, a specific offer, a practical offer, that lies well within their capacity and capability to deliver - which they will wish to want to do - and that they know you may well need to have done and will be more than grateful for.
Accept such genuine and sincere offers.
5: Set Limits:
Do not be afraid to set limits.
Or boundaries.
Boundaries include ignoring (or excluding) morons who attempt to lecture (or judge) you (when you will fall short), while doing (or contributing) next to nothing themselves.
Set a rule that if someone is not actively involved in your mother's care (or, in some other way, is of genuine assistance to you, or supportive of you), then, that they have no say whatsoever in your mother's care and that their input is neither sought nor relevant nor heeded nor necessary nor needed. Put bluntly, if they are not actively supportive, what is happening is none of their business.
You will find (well, I did) that your tolerance for everyday, quotidian, idiocy is sharply curtailed.
You will get fed up (and sometimes infuriated) - well, I did - at how everyone seems to ask for (or about, or after), your mother, but few will realise the demands made on you.
You will find small talk moronic and barely endurable (and I have worked as a diplomat) because you are so emotionally exhausted, and you will find the witless self-absorption of imbeciles impossible (the clowns who complain about preposterous trivia while your adored mother has reverted to the hilarity and heart-breaking behaviour of childhood).
Three things lead to people ending up in care homes - despite many of them having loving families.
The first is carer burn out: If you burn out, you simply cannot care for someone else no matter how much you may wish to do so.
The second is 'sun-downing', which means nocturnal wandering on the part of the person with dementia, which is exhausting to deal with, because it - keeping someone safe from doing some damage to themselves by accident and staying sufficiently alert and awake to be able to do so - will lead to utter exhaustion on the part of the carer. You cannot stay awake both day and night.
The third is violence: One of the things - characteristic things - about dementia is that it does not simply and solely rob one's mind, and destroy one's memory, but it also - weirdly - serves to lower inhibitions, and lessen the 'barriers' governing behaviour and self control (in other words, stuff such as manners, and good behaviour, the sort of thing that we drill into children in order to teach them how to become civilised human beings who can engage with others, and relate to others, in a courteous and respectful manner).
I have known of women in their 70s, or 80s, small, ageing women, who had to admit their spouses - spouses whom they adored, but spouses who were still large, powerful men, irrespective of the destruction of their rotting and disintegrating minds - to care homes, because of the violence, which they could no longer deal with (and which nobody should ever be asked to accept as the price of sustaining any sort of relationship; the excuse - or explanation - that "he/she is losing his or her mind" (which they are, quite literally, in the case of dementia) is still not an acceptable excuse).
Nobody, but nobody, should have to - or be expected to - accept violence in a relationship, irrespective of context or circumstances.
My mother - who had never lifted a finger to us as children, who had campaigned against corporal punishment in schools, who knew her Dr Spock - hit me one night, while she was roaming the house at 3 a.m. (which occurred when I attempted to persuade her to return to bed); another time, she attacked each of my two brothers (which still shocked them, even though I had warned them).
That night, when she hit me, - in fact, she laid into me like a boxer, she had excelled at sports as a young woman, was Games Captain at her (posh) boarding school, played table tennis at just under international level, excelled at tennis and hockey at school, and later in life was extremely good at golf, and, as I now know, was well able to land a punch - I recall how I was shaking with real rage unable to sleep when I finally managed to return to bed.
But, there were sweet - sometimes, bitter-sweet - moments too.
Learn to treasure them - those fleeting, times, those brief, snatched moments when the glory of memory, or some sort of cognisance and awareness, returns, if only for the span of a gossamer thin thread of time.
6: Be kind to yourself.
Try to make time for yourself, ring-fence some (snatched) time for your hobbies, interests, or something you enjoy, and police those boundaries ruthlessly.
Forgive yourself when you fall short of a presumed care ideal.
7: Step-wise nature of the Condition of Vascular Dementia:
Vascular dementia is a condition with a very specific profile, for the decline manifests as a so-called "step" form, (as in, a step, when one is descending a flight of stairs).
Thus, you can expect to see a (heart-breaking) reverse of the arc of growth.
The actual deterioration (often, as a result of - in our case, it was a cluster of micro-strokes at a time, after which, the condition would stabilise for months and months), will express itself as a sudden, steep, (or sharp) decline, deterioration, after which, it will stabilise, (perhaps, even, slightly improve, but will never return to what it had been prior to the most recent cluster of micro-strokes), become a "new normal", which you will then become acclimatised to, used to, and will have adapted to.
That "new normal" can lull you into a false sense of security, as you adapt to this (and it is amazing what you find that you can adapt to over time), leading to a fresh shock when the next steep decline occurs, which you, in turn, find that you must adapt to.
This means that each sharp decline resembles a "step" - but, specifically, a step down, a step that is descending the riser of a flight of stairs - and then, you will stand on the horizontal part of the stepped stairs, when the condition will stabilise, sometimes, for many months at a time.
Thus, you will see - over time - the arc of growth played out in heart-breaking reverse: I remember a time when my mother resembled a bright ten year old, then, a bright seven year old, then a three year old, then a one year old, and then, (and I remember asking myself one night, as I stood while watching over her in bed, in her darkened room, lights dimmed, and saw her draw in a deep - but calm - relaxed breath, deeply seriously soundly asleep, but still clutching - with both hands - on her chest her adored, battered, cuddly toy, a bedraggled brown monkey that went by the name of "Mr Monkey") what - when you have arrived at an age of less than one, where do you go next? Of course, needless to say, I knew full well where you go next, but, at the time, I just didn't want to admit - let alone accept - that answer.
The one advantage of vascular dementia (as opposed to other types of dementia, and unlike classic Alzheimer's, for example), is that while the person is robbed of their mind and memory, their essential character remains in place, or intact, until very late; in fact, while my mother's fierce intellect (and sharp wit) were both a casualty of her heart-breaking condition, her character (essentially sweet) and sense of fun remained until the very end.
However, it is not for nothing that dementia is seen as - described as - experienced as - "A Long, Slow, Good-Bye".
While you are caring for your mother, you are also - at the very same time - grieving for the loss of who she was, and how you had enjoyed (and experienced) your relationship with the person she was.
So, you are simultaneously caring for someone while grieving for the loss of who they were, both for themselves and for that relationship with you.
My mother - a fiercely intelligent and formidably well read and widely-travelled person, who loved to laugh - and I used to enjoy going to plays (art house, avant garde stuff: Beckett, Brecht, Brian Friel, etc), book launches, authors doing readings from their work, art galleries, and sometimes, political meetings - together, and discussing politics, art, culture and history together.
Needless to say, dementia put paid to all of that.
In the early stages of the condition, it is harder on the person suffering from it, as they are aware of some of (or much of) what they are losing; early on, I remember my mother coming into my study one evening and saying - in a tone of appalled and pained horror - "I feel as though I have black holes in my mind".
However, later, as they lose themselves in the tragic arc of their inevitable regression, - and, as their physical needs increase - if well cared for, the person will be content, while the tragedy is experienced by those carrying out the caring role.
8: Public Healthcare: Any Healthcare.
Find out what you are entitled to and claim it - all of it.
We were (are) exceptionally fortunate that we live in a country with a very good state funded system of public healthcare (which I know is not the case in the US, but this is the norm in Europe).
Thus, we were able to avail - as of right - of the sort of healthcare that provided us with weekly (and, later, twice weekly) visits from community nurses, (and doctors when needed), physiotherapy, medication, and so on.
And the state provided us with carers who visited three times a day, seven days a week (for around half an hour, 40 minutes, each time) for tending to - addressing - her immediate care needs, - (such as changing - when incontinence became an issue - my mother, bathroom, washing, dressing, checking that she had taken her meds, etc) for over six years.
This meant that all of my mother's actual medical needs (by that, I mean actual medication - for, she was on an extraordinary cocktail and selection of daily medication, some of her tablets had to be taken several times a day, some twice, others merely daily, for, in addition to her dementia, she suffered from a couple of cardiac conditions - which meant that she had a pace-maker, plus a number of stents, for example) were funded by the state, and delivered to our door - free - by a local pharmacist (yes, we had to have the prescriptions renewed and revised or amended if necessary - also free - every six months, if memory serves).
As my mother's condition advanced, and we made it clear that we wished to care for her at home, we were also supplied with a (disguised) hospital-style bed, (that could be raised or lowered, tilted, etc), an air mattress (these came with control panels that would not have been out of place on the Starship Enterprise), an electric hoist, (for, in the last years, she was not mobile, and even with the hoist, it took two people to move her), and a "Buxton" style day armchair that she could spend some time in, during the day (these were all supplied, and regularly serviced, by the state, at no cost to us).
However, and however......
9: "Rainy Day". Finances & Funding:
There is a saying recommending that people put something aside (financially, that is) for a proverbial "rainy day".
This - a diagnosis of dementia -
is the rainy day.
If you have savings, (or, your mother has savings), this is the time to call upon them, for this is the rainy day.
While we had significant state support (in the form of access to a state funded public healthcare system), my mother's care needs - particularly as time went on - required much more than that.
We were fortunate that we have had the advantages of what is described as a middle class background and lifestyle; My two brothers and I are university graduates, which has meant that we have had decent jobs.
Moreover, my mother, who also had a decent job, enjoyed two pensions (her own and my father's).
I, myself, used to be a university teacher, and, in more recent times have worked in a diplomatic capacity with the EU as a political analyst in some of the worst places on the planet. The reason I mention this is that my salary (which additionally included hazard pay in the form of a rather generous per diem) was reasonable.
The point of all of this is to explain how (and why) we were in a position to be able to afford to pay the salary of the wonderful person I have described on these threads as "the carer".
"The carer" was (is) a fantastic Filipina woman who lived with us for just under six years, (yes, six full years), and who cared - truly cared - for my mother (with wit, warmth, kindness, incredible competence), for all that time, which allowed us to care for my mother in her own home (for, my mother would have hated to have had to go to a care home), where she felt comfortable and cared for and felt content and safe and loved in her own home.
In addition to the full time carer, we also had a few others - such as a superb semi-professional musician who played the accordion and sang old time music hall songs with a band as a residency in a few pubs - who would come in for a few hours once or twice a week, to give "the carer" a bit of a break.
If (funding) full time care is not an option, perhaps a few hours of part time care could be funded, - if not daily, then, at least once or twice during the week - if only to give you, yourself, a brief break.
Also, on the matter of finances, (and before her deterioration has become too pronounced, or marked), if you have not already done so, might I suggest that you look into drawing up an Enduring Power of Attorney, which will allow you to be legally responsible for your mother's care and for her life, and will also allow you access to her assets (presuming that she has assets) in order to provide for her care.
We did so (that meant a trip to the High Court, but it went through without a problem), which was very helpful, as was the fact that some time before she was formally diagnosed with dementia - when she was still reasonably competent but depressingly aware of her deterioration - my mother asked me to accompany her to an arranged meeting in her bank, and thus formally arranged for me to become a co-signatory on all of her accounts which gave me legal permission to access her accounts (and sign cheques, use her bank cards), in order to pay some of the bills, as needed.
In any case, I hope that these words are of some small help to you.
May I take this opportunity to wish you the very best of luck.
