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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