Caring for my mother in the grip of her Alzheimer’s is an ordinary act of love
The things that seemed impossible, like changing her pad, are made rewarding by disengaging my self-obsessed brain
If you had told me five years ago that I would have to change my mother’s diaper, I would have hyperventilated at the mere thought. The reality of doing it, when it became necessary, was actually surprisingly straightforward. The same applies to most aspects of caring for a loved one. The things that seemed impossible in theory are made possible by love. It is as if a limitless battery of affection has been charged by 40 years of her looking out for me; and now that the reverse is needed, a splendidly efficient autopilot system has engaged.
I share the responsibility of looking after her with my sisters. To say I am her part-time carer would not be accurate. I am, rather, her full-time carer some of the time. Every couple of months, when I fly back to her to do my “shift”, the terror of the possibility she might not recognise me looms large. I have to actively stop my mind from running forward. First, because Alzheimer’s is not a smooth downward curve, but a jagged downward line – she has good days and bad days, just like everyone else. If she is confused today, she might be much less so tomorrow. Second, because I know now that the imagined reaction to a horrible hypothetical is always more dramatic than the actual reaction to the real.
I realise another thing, too. As someone who hasn’t raised children I find the process exciting and rewarding – is that OK to say? Practicality takes over. Routine becomes the balm of anxiety. There is an enormous amount of washing and cleaning and ironing and planning and shopping and cooking, and a little crying and mostly anticipating need or danger. I have never had someone depend on me so completely.
Offering unconditional love is a pleasure I had quite forgotten in the cynicism of my 40s. Of course, I would give anything to have her dementia disappear. But it can’t and so I make the most of the situation as it is. It has taught me more about myself and the world than any single situation before. It is a juggling act that we make up together as we go along. I am raising my mother in reverse, and that is as challenging, fulfilling and impossible to prepare for as it sounds.
We pan together for gold on a daily basis, and while we empty pail after pail of frustrating sand, the occasional nugget is more than enough to sustain us. She can still experience sudden, merciless moments of absolute clarity. Sometimes they manifest as angry shards of the woman trapped somewhere inside, piercing through the fog of pharmaceutical oblivion, threatening or pleading. On other occasions it is like my beautiful mother of 10 years ago has come to visit for a morning, have a cuppa, see how I’m doing and thank me for looking after her.
Three weeks ago I was in the land of make-believe, singing and dancing on a London stage. This morning I stood in the shower, fully clothed, washing my mother, naked and sobbing, after she had an accidental bowel movement. It is as big an adjustment as I will ever have to make, I think. To borrow a line from one of her favourite films: “When you’re a secretary in a brewery, it’s pretty hard to make-believe you’re anything else. Everything is beer.” All I am, when I am with her, is her son. Nothing more, nothing less. I am the supporting actor of her Act III; she the protagonist of my Act II. Life is inescapable and also deeply tender.
I am always surprised when people say “you’re so brave” or “I don’t know how you manage it”. We have looked after our young, our sick and our elderly for millennia – much longer than we’ve had currencies or composed symphonies, or even believed in deities. What I am doing is, in actual fact, entirely ordinary. All that was required was to disengage my overactive, self-obsessed, 21st-century brain and allow it to happen. It is what is in our DNA: love and compassion – not selfishness, not envy, not hate, not a desire for profit. When the time comes and one has to step up, that much becomes crystal clear.
We must share our stories, without shame. Sharing our stories is therapy for the individual carer and support for others in a similar position. It helps develop a collective understanding and a body of coping strategies. This year alone in the UK an estimated 116,000 people will have to leave or significantly adjust work in order to care for someone with dementia. To be silent, to hide our elderly people away, is to condemn millions to the joyless torpor of merely awaiting death in isolation.
There are still gold nuggets to be found in the deepest, thickest sludge. Don’t miss them by looking too far back or too far forward.
By Alex Andreou – theguardian.com, Friday 28 November 2014 17.07 GMT
Permission to use provided by Alex
This is My Story – January 2015
Hi, I would like to tell you about my experience with the CASH service, which supports people who are affected by another person’s addiction.
Firstly I would like to tell you a bit about my background and my experience of living with someone who was and still is in active addiction. Since the age of fifteen, ten years ago, I started a long term relationship with a guy who smoked Cannabis on a daily basis. As the years went on and two children later his Cannabis use had grown out of control to the point where he was stealing, not only from me but from his own children, to fund his addiction. The relationship was horrific filled with arguments, lies and I did experience domestic violence on occasion. Towards the end of this relationship my own health began to deteriorate and I started to experience aggressive panic attacks without warning and these began to impact on my everyday life. The panic attacks got that bad that I went to my doctor and was prescribed anti-depressants. Following a further incident of theft I ended the relationship and asked him to leave. I hated him for what he had done to me and the children; I hated him for not being able to stop for us; and I hated the fact that I couldn’t make him stop!
I moved on with my life, I got back in contact with old friends and began to feel like me again. I stopped taking anti-depressants and the anxiety attacks did not return. However, in June 2014 I started a new relationship with a guy I had known for many years and had always been close to. I was aware that he too had a history of drug and alcohol abuse but what was different about him was that he admitted he had a problem and he had just come out of rehab. I was so happy because he was clean and sober! For the first two weeks our relationship was amazing, it was that good that I thought my entire life was finally complete, but I was wrong. My new partner relapsed after two weeks of leaving the rehab centre but I was unaware of this relapse. The first alarm bells that sounded started when I began to find different bits of tin foil in his pocket and random items around the house would go missing. I researched what I had found and questioned my new partner about this. At first he denied it, but in September 2014 he admitted to me that he was using again. I was horrified, I didn’t know what to do, I felt like I had fallen straight back into the same type of relationship that I had to fight so hard to get out of!
BUT THEN I found CASH! I asked my partner if there was any support that I could engage with because I couldn’t imagine going through the same emotions again; my anxiety was already returning by this point. I received a leaflet about the Carer’s Service and I contacted Clare, the Drug and Alcohol Carers Advisor, and she arranged for me to have a one to one session with her to discuss my situation and how she could help. I was extremely worried before going to my first appointment because I was going to have to admit how rubbish my new ‘amazing’ relationship had actually become. My friends and family only knew half the story and, even only knowing half of what was going on, they still only told me to JUST LEAVE HIM, YOU’RE WORTH MORE, and YOU CAN DO SO MUCH BETTER! But these to me were so unhelpful! I was worried that I was going to get the same sort of reaction at my one to one meeting but it was the complete opposite. I sat and spoke to Clare for a good hour or more, and I still regularly do. What Clare did for me was what nobody else has ever done, she sat and listened but did not judge me, didn’t try and make up my mind for me, she listened to what I was saying and offered me support in dealing with my situation that meant I didn’t have to finish my relationship.
I started going to the weekly support group to talk to other people in similar situations and I have met some amazingly strong people who are all going through the same emotions as I am just in different situations. The weekly support group has become an essential part of my week; it is a time when we can all discuss what is going on in our lives with as little or as much detail as we want. Just through sharing these experiences and receiving advice from both Clare and the other members helps me to feel relieved and ready to face whatever is next to come.
I have also benefited immensely from doing various courses with the CASH group and I have come to understand a lot more about what it is my partner, and in fact my ex-partner, are having to deal with; but through learning this I also have realised that I do not need to go through this with them! I can be there to support my new partner but I do not need to allow myself to be devoured by his addictive behaviour. The key thing that I have learnt is that knowledge is power and when you are faced with something that is frightful, alien and frustrating, the best thing to do is find out as much as you can about it because once you know what it is you are dealing with then you can deal with it in a much more positive and healthier way.
Another, fabulous reason to be involved with the CASH is that there are great events, trips and complimentary therapies that we get for the sole purpose of helping us to put ourselves first for once!
If you are someone who is struggling, or even just downright fed up, of having to deal with someone else’s addiction then I would advise you to get in touch with Clare and meet up for a chat. There are many more services that the CASH offer other than the ones I have mentioned above and you may find that you can benefit from these as well.
CASH has taken me from being someone who was so angry towards people who took drugs and couldn’t stop for the sake of their families, to being someone who understands what addiction is and that it is not something that I can control, no matter how much I would like to be able to. I have been able to take a step back from the addiction and remain at a distance by concentrating on myself rather than my partner’s addiction.
I hope my story has helped you to understand that there is help out there for you! You are not on your own and you do not need to feel like anyone will judge you for ‘putting up with’ someone else’s addiction. We are all human and we all need support from others who know what we are going through.
Good Luck with your own journey and try to remember YOU need looking after as well!