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AFTER MUCH DELIBERATION I decided to start a blog that documents the journey that myself and my husband are on while caring for my dad who was diagnosed with Alzheimer’s Disease in November 2013. We are a “normal” married couple in our mid-late 20s who both work full-time and have just bought our first house together. Apart from dealing with the stresses of everday life, we also do our best to care for my dad who lives with us full-time.
Trying to hold down a “normal” life while caring for my dad can prove difficult at times. In fact, it is a challenge that I regularly feel I am being defeated by. I have often said to my husband that if my working life is going well, it feels that my dad is being neglected and vice versa. I think some of what I feel is comparable to what a woman feels when she returns to work after having a baby.
It’s so hard to express how bitter-sweet it is experiencing the joy of having my dad, who I love so much, still with me, but at the same time, feeling the sadness and bitterness that he is no longer himself (ie, his former self).
He still knows who I am – and I no longer take that for granted
I should point out that my dad is still in the moderate stages of Alzheimer’s, thankfully, so I have a lot to be grateful for. I am aware of this. The simple fact that he knows precisely who I am when I walk in the door in the evenings is something that I no longer take for granted. However, I can almost be certain that he won’t know what day it is, which carer has been in to him, or what he had for lunch.
Sometimes the cat will come into the living room when I get home and I will put her out for a few minutes. He will comment on this and say she’ll be fine in the cold because of her fur, but will most probably ask “is she in bed?” five minutes later. He will have no recollection of the conversation we just had about the cat’s whereabouts. As to my husband Oisin’s whereabouts, he will inquire after those multiple times until Oisin walks in the door. While I realise that on the surface these things might seem minimal, anyone who comes home from a long day of work will find having to repeat themselves three to five times in the space of a half hour exhausting and frustrating.
Having to deal with the situations outlined above on a daily basis can be difficult for two reasons. Firstly, sometimes I am in a rush to get the dinner on because I am hungry and grumpy and I simply do not have the energy to sit down and rationally go through all of the answers with him. It is even more frustrating when I do make the time do this, but he asks me the same questions a few minutes later. Naturally, I am tired and I actually just want to be left alone. Sometimes I envy those who can just go home and sit on the couch all night and not talk if they don’t want to. Secondly, it is hard because again it’s a constant reminder that my dad is no longer the same man. And this is the real crux of the issue.
It’s so hard to watch his interest in life wane
Although never an academic, my dad was exceptionally sharp. This sharpness is long gone. Every so often he will say something that surprises me though – for example, he’ll forge a link between a present politician and an older one who may be related of part of the same political party– but, on the whole, this part of him no longer exists.
Other parts are also gone, such as his interest in life. When he’s having a bad day or week, he simply doesn’t seem interested in anything that’s gong on around him. I find this hard to watch and be around because sometimes I get the impression he no longer cares if he’s alive or dead. This is especially obvious with the lack of interest he displays in the GAA championship. An avid GAA supporter all of his life, on any given Sunday it is almost certain he will no longer be able to tell you who’s playing in Croke Park.
I’d give anything for my dad to be able to join in a conversation
Something that is becoming more and more of an issue is his ability to follow and contribute to a conversation that has more than two people in it. A friend visited us for dinner one evening last week and during the three hours he was there, I think my dad uttered ten words. And most of those words were said to the cat! I explain to friends discreetly that he’s not being rude, and that unfortunately this is a symptom of his Alzheimer’s, and although all of our friends are understanding, I’m never entirely sure if they understand me.
It’s ironic because when you’re a teenager, by your very instinct, you are embarrassed by the mere presence of your parents around your friends. But now I’d give anything for my dad to be able to converse with them, even if it were him ranting about Kerry winning the All-Ireland Final so many times. It’s strange how things change.
I’ve so much more I could say on this, and might in the future, but I think that’s enough unburdened for now. I will end this post by saying that a question often asked in life is: “when does the child become the parent?” I feel this transition happened a number of years ago between me and my dad. Having my dad living with us is something that I wouldn’t change for the world but I’d give anything for him to be my parent, even it was only for one day.
Helen Cashell-Moran is a PhD candidate in Trinity College Dublin. She blogs at LivingWithAlzheimersDisease.com
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Eaten bread is soon forgotten. If their was a measles epidemic in the wealthier countries the anti-vaxx brigade would soon be lining their kids up.
@Danielle Cafolla: Yep too removed from the devastating effects of preventable diseases.
Wealthier countries have more internet access where any old Yahoo can make up some facts and write it….coincidence I don’t think so
@John Horan: 100% agree. I’d even go one step further with your analogy. I work in this area, and in my experience the vast majority of anti-vaxx parents are middle-class, and moderately educated. They consider themselves to be well-read on the topic, but unfortunately via unreliable sources, probably no better than Yahoo. The Dunning Kruger effect in action.
I have seen so many comments online, and twice face to face, where someone says something along the line of
“Sure we don’t need to vaccinate for . Nobody gets that anymore.”
It actually causes me physical pain where I hear such stupidity!
@The Bob:
And my personal favourite:
“We all had measles as kids, sure it never did us any harm…”
(*apart from the 50,000+ deaths it causes annually)
@The Great Unwashed: Yes, yes. Another golden one that is.
People in developed countries have more access to social media platforms and are subsequently influenced by Facebook pages endorsed by the anti-vaxxer movement. As such, they fail to vaccinate their children in the mistaken belief that it causes a raft of conditions such as autism, ADHD etc. it’s amazing how a few “likes”and “shares” lure the gullible in to unsafe practices regarding their children.
Always took the French as being intelligent. Sorry that my presumption is wrong.
Don’t forget to ask the questions, it’s amazing the lengths the Pharma will go to , to make a buck . My question would be are we 100% sure about these vaccines or is it a matter of they do the job , why now is there so many cases of autism in our children like never before. Many questions to be asked and answered but then there is no money to be made .
@rosemarie slamon: Your comment would be hilarious if there wasn’t kids dying over this level of stupidity. Can you join the idiots queue at the back please?
@rosemarie slamon:
Please point to ONE SINGLE study that has found a greater prevalence of autism in vaccinated vs. unvaccinated cohorts of kids.
I’ll wait (but I won’t hold my breath if that’s ok).
@rosemarie slamon: ah Jebus. So you mention “many” questions to be asked then pose precisely 2, that are easily answered. Yes we’re quite sure about the vaccines. And they have NOTHING to do with bloody autism. The increase in diagnosis you mention is because of (to list a few) the widening of diagnostic criteria, a greater understanding of autism among all stakeholders (general public, parents, educators, health and medical professionals), not reactively sticking those with autism in institutions and a society and economy that allows more people with autism (though not enough) to lead fulfilling successful lives which leads to greater visibility as a whole and a greater likelihood that they will have children & ASD is genetic so more people with ASD. Any other questions darling?
@rosemarie slamon: Maybe you could reach out to a grieving mother in the third world who has watched their child die of a sickness that is preventable, a mother who never had access to vaccination. Perhaps you could explain to her your illogical anti scientific privileged opinions based on Internet nonsense . I am sure she would be gobsmacked by the illogical nonsense you have accrued from your position of safety and luxury. Of course its easy to be illogical when you cushioned from the real world, the world where children die in the tens of thousands from lack of basics such as medical care or access to clean water and diseases that we thought we consigned to the past .
@rosemarie slamon: “why now is there so many cases of autism in our children like never before.”
Because milder and more numerous cases are getting diagnosed, the diagnostic has net has widened (diagnosing milder cases), more cases are spotted and fewer cases are slipping though. The real number has not changed.
To confirm that autism has not increased, psychologists went into the community in the UK to look for adults with undiagnosed autism, who were missed as children. They found autism is as common in adults as it is in children today, proving conclusively that autism did not increase over time.
“The prevalence of ASD in this population is similar to that found in children. The lack of an association with age is consistent with there having been no increase in prevalence and with its causes being temporally constant.”
So no, …. vaccines don’t cause autism and anyway autism isn’t really increasing in frequency.
References:
Brugha, T. et al. 2011. Epidemiology of autism spectrum disorders in adults in the community in England. Archives of general psychiatry, 68(5), pp.459-465.
@The Great Unwashed: I think Dr Whitfield did a great study once. In his shed I believe…
@rosemarie slamon: nothing you just said is true. I’d argue about it but don’t have the energy. I’d cite my credentials as someone with a background in genetics, medicine and statistics as grounds for what I’m saying but you’d probably just accuse me of being “brainwashed” or working for big pharma (or hilariously the time I was told my years and years of training make me “no more qualified” to weigh in than the anti vaxxer with a smartphone) anyway boils down to….
Vaccinations = good,
Subacute sclerosing panencephalitis as a result of measles = bad.
Autism = genetic developmental disorder unrelated to vaccinations but NOT in utero exposure to vaccine preventable diseases
Autism prevelence on the rise = baseless claim but even if trend was an increase numerous etiological and diagnostic factors would be at play the only one definitively not linked = vaccinations
@rosemarie slamon: Older men more likely to have kids further along the autistic spectrum. In general people are having kids at older ages, this trend has been in place (in developed world at least) since the 1960s.
@Sarah:
You need to be careful mentioning Dr Whitfield, I got banned from this website for making my opinion of that particular “Dr” abundantly clear.
@java_cakes: I’ve often wondered about that. For some reason, so often only women’s details are studied. They don’t seem to record the ages of the fathers. I don’t know if there is any actual study on this.
Why do we need to have faith in this?? It’s got a well proven track record. Leave the faith for the superstitious.
More worrying, 9% of Irish people surveyed, would’ve been better off being taken by one of the diseases they were most likely vaccinated against as children. Darwin is a great equalizer. I’ve said it before, what the world needs right now is a nice apocalyptic pandemic to even the playing field again.
The best one I heard was a parent sending out birthday invitations for their child that read at the bottom “only vaccinated children please” for the other parents to later find out that the parent sending the invitations hand not got their child vaccinated because they didn’t believe in it!!
They just have more options. In a poor country you take anything that keeps you healthy and pray not to get sick. Any risk associated with the vaccine is outweighed by your lack of ability to deal with illness.
@Dan: and those “risks” are immeasurably outweighed by the whole not getting potentially lethal diseases thing
Because how a person feels about something in wealthier countrys counts as rational thought.
Dunning-Kruger Effect in action
G Manning, lots of talk, but no evidence and could you please refrain from calling me darling
@rosemarie slamon: No evidence of what? It’s not darling he should be calling you by the way. You love, are away with the birds.
@rosemarie slamon: ok hon. Your delusion is impressive if nothing else given you’re trying to point to my lack of evidence when everything you said is nonsense. Vaccinations have no link to causing autism and it’s beholden to anyone making such a claim to prove it, which you can’t. I also explained your “increase” in autism for you though David Jordan put more effort in along with citations. Is there anything else we can resolve for you? Bigfoot, mermaids, why fedoras are never a good idea???
@rosemarie slamon: “lots of talk, but no evidence”
One could accuse you of the same.
G Manning, lots of talk but no evidence and could you please refrain from calling me darling
@rosemarie slamon: saying something stupid twice doesn’t make it any more true pet.
But they do use Mercury, aluminium and Formaldehyde in vaccines and that is what scares people.
https://en.wikipedia.org/wiki/Thiomersal_and_vaccines
https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/common-ingredients-us-licensed-vaccines
Just to say that since 1960s, vaccines came in and autism rates have increased. This is a correlation, not a causation.
In reality higher autism rates are caused by older fathers. In general men have been having kids at older ages since the 1960s.
Instead of labelling anti-vaxx people, please explain the above to them so they can see this is not some kind of giant conspiracy.
@java_cakes: not the only cause for the increase in diagnoses but a factor. Do you really think these anti-science types will accept that explanation when they deny all others?
Without struggle people become self destructive?
Saying something stupid twice doesn’t make it any more true pet
@G Manning: see
@G Manning: for a second there I thought you were actually intelligent
@rosemarie slamon: well I’ve made a logical argument backed by facts. You’ve done the opposite. Willing to accept vaccines have nothing to do with autism? or are ya headin further down that online, unqualified, ignorant, “my mates friends aunties vaccinated donkey once bad touched a fireman who knew a person with autism…there must be a link!” Brigade?
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