Operation Good Times: Samira Mohyeddin and her father

One of my friends recently had to pack up her London flat, pack in her job and move back to Canada to care for her elderly mother. I’ve been chatting to Alexia a lot recently via email and suggested she write down her experience for That’s Not My Age; as caring for parents and loved ones is a challenge that many of us have (or will have) to face. I’m hoping that Alexia will provide updates of her ‘Finding Joy in the Meantime’ project, as and when, and she’s promised to send a photo, too (last week she was busy going to and from hospital appointments with her mum and so I’ve used an image of Samira Mohyeddin – see below):

A little over a year ago my mother got diagnosed with cancer and I became her full-time carer. What got us through, and continues to do so, are the little moments of grace and joy in the everyday. Don’t get me wrong, it has come at the price of a lot of tears, frustration, tantrums and trauma, but it is the recognition of how lucky we are to have this time that always brings it back to the positive.

“It’s good that you can still laugh about things,” said a nurse to me, when my mother was suffering from chemo-induced pneumonia. “I laugh so I won’t cry,” I told her. And we continue to laugh at home. We laugh at absurd things on the news, or at absurd people. We’ve been bonding over our mutual love of the 90s sitcom Friends.

While recently promoting her new book Dead People Suck comedian Laurie Kilmartin, spoke about finding humour while caring for her dying father. She would secretly record entire conversations between her parents – some up to two hours at a time. The mundaneness of their relationship-dynamic was both funny and, eventually, precious. I’ve started recording my mother. I’ve recorded her voicemail to me singing ‘happy birthday’ and, en route to a hospital visit, I taped her and my uncle bursting into a classic tune from the old country (my mother is Greek). They won’t win any Grammies but, boy, it does make me smile.

In her mini-documentary Operation Good Times broadcast journalist Samira Mohyeddin, affirms the joy of musical participation when she turned her father’s hospital room into ‘Studio 54’. To paraphrase, “there was a lot of singing, and a lot of dancing and a lot of drugs [pharmaceuticals]…” Music is life affirming and an instant joy magnet, evident when room 346 became a respite hub for others on the hospital floor.

I’ve found a new purpose in asking questions: ones that I have always wanted answers to, or anticipate wanting to ask when she is gone. I am discovering who my mother really is as a person – outside her identity as my father’s wife, and the mother I thought I knew as a child. I’ve learned that she loves art and movies as much as I do. I’ve been pleasantly surprised at her dry sense of humour and have learned that she is impatient about untidiness but infinitely patient with her pain.

So, I intend to record her adventures during an impoverished, war-time childhood – which I am constantly asking her to repeat (they are funnier than the description implies). I guffaw at her spontaneous, out-of-tune singing. I rub her aching limbs, happy to soothe her through touch. I ask for a lot of hugs and I hold her hand. That is how I’ve found joy in the meantime.

Alexia Economou is a design and culture journalist @thedesignfeedTW

39 thoughts on “Caring for an elderly parent and finding joy in the meantime

  1. A wonderful post Alyson…. One of the reasons we returned from Australia last year was to be nearer ageing parents and I don’t regret it for a moment. Thankfully they are in reasonable health at the moment but as they’re in their mid eighties you never know what’s round the corner.

  2. I have recently become my 90 year old Mother’s carer. She has Dementia and it is the most intensely difficult thing I have ever done.
    I send good wishes and strength to any other readers who also struggle at times.

  3. like Jodi, I experienced my mother’s decline into dementia, and now my husband is going through the same. It is a very challenging and upsetting experience for any child. It is lucky if a child begins with a loving relationship with his/her parent, as the good moments are very precious as the illness progresses.
    This also leads to the difficult subject of supportive healthcare and the NHS – read Lionel Shriver’s startling novel ‘Is that it?’ to
    see how lucky we are in the UK at the moment.

    1. The NHS is, undoubtedly, the jewel in Britain’s crown. The dedication, kindness, empathy and sheer hard graft displayed by its wonderful staff (often in very difficult circumstances) simply takes my breath away. I agree that we often take this priceless, and free at the point of use, service for granted. I salute them.

  4. Thank you Alyson for covering this important topic. One which pertains to all of a certain age should their parents still be alive.
    My good wishes to Jodi and Karen writing above about caring for ageing parents with dementia.
    A subject I was well acquainted with. I had supervision of my mother who suffered from Alzheimer’s disease for many years. At the same time I had two young children to look after and a professional and personal life. Very challenging and heart breaking at once. Finally my mother went into a nearby nursing home because we couldn’t cope without specialised nursing care.
    I wish the best of luck to all who are living through this challenge now. I’m sure it helps to share with like minded people.

  5. This hits home. I’ve been through taking care of my parents, who’ve been gone for a few years now, but now it’s my husband, who is 19 years my senior (I”m sixty-four; he’s eighty-three). He’s coming home from hospital today after a long bout with viral infections and COPD and severe emphysema. Things will be different now. I’m not sure what changes will be needed in the house, or if I’ll still be able to keep my part-time job (which I love). Scary.

  6. Good luck to Alexia in finding Joy in the Meantime. Sounds like an excellent idea to talk ask questions and record things while her mother is capable of communication.
    My mother lost ability to recognise family members and to read or speak. Hard to witness and the ability to ask questions and find answers is then lost forever especially if the other parent died young long before.
    Savour the bits you can. And the Joy in the Meantime.

  7. Really good post. My mother passed last year from a four month bout with pancreatic cancer. My sister and I shared caregiver duties. It was difficult to watch my very vibrant 89 year old mother wither away. She was a fighter though, and as your story mentioned, she would also talk about her war impoverished childhood in France and told us other stories about her life that we never heard growing up. I am so grateful that I had so much time with her in the end to make her comfortable and be at ease with going to the other side. My father died four years ago, also from the pancreatic cancer – which is so weird that they both died from the same cancer – and it was a quick and furious 13 days from diagnosis to death. It was terrible. Caretaking is exhausting, but at the same time it is an honor to be there for your parents. As a caregiver, you have to give yourself a lot of space to deal with the physical and emotional work of it all, and you really need a good foundation to fall back on when you need support. You have to take really good care of yourself while you are caring for a dying loved one. Eat right, get as much sleep as you can, exercise (that’s the key in my opinion) to release everything you may be dealing with, and talk to a therapist if you really need more support to get through it all – that’s very helpful after the fact. My heart goes out to all caregivers everywhere. Thank you for this post. I think many of your readers are of the age where it’s becoming a reality.

  8. I’ve always been a caregiver to my parents , on some level , as they are both deaf .
    When my dad was diagnosed with cancer and underwent extreme complications , (almost five yrs ago) the role of caregiver became more challenging and intense and I am a cancer nurse .

    I had to take a leave from my job and be there for my dad and Mum . I was their everything , the nurse , the interpreter , the caregiver but was the daughter last . I found I could not be the daughter and the caregiver at the same time (it was a very complicated situation).
    Though I am grateful to have had that time with my dad (it was precious and sacred time) , it did take its toll on me and it was a traumatizing experience . My dad did pass away six months of being diagnosed . The hospital where he was treated and died in , was also the hospital where I worked . Not many people have to return to their job and carry on as nothing has happened . The first few months , when I left after a 12 hour shift , I would cry , as I felt I was leaving my dad behind.
    My mum is approaching 80 and I must say I do fear having to go through it all again . I pray I don’t .

  9. Thank you Alyson, for this post. I enjoy all your posts, but this one in particular hit home. I am in my late 40s now, however, when I was 25 years old, I left for New York City (I live in upstate New York) to interview for my dream job of working at a women’s fashion magazine. I was offered an editorial assistant position at Harper’s Bazaar and was elated! However, I was wracked with guilt because my mother suffered from a progressive form of Multiple Sclerosis and was already in a wheelchair (in her 40s). I called my father from New York City to tell him my good news, and although he was happy for me, he expressed his concern regarding how he could not care for my mother in our home without my help. Well…to make a very long story short, I sadly turned down the job offer and returned home to help care for my mother. Those caregiving years lasted over 20 years and were intense. Then, after my mother passed away when I was 39 years old, my father was diagnosed with Stage IV Esophageal cancer, and I then became the sole caregiver for him for another four years until he passed away. I have now lived about four years of my adult life, without being a caregiver. It seems foreign to not be a caregiver and no job feels significant. However, I learned so much from my experience-the deep fulfillment that came from caring for my parents, gratitude for my own health, empathy, compassion, respect and sensitivity for human dignity, patience and perseverance, resilience, hope and how to remain as positive as possible while going through some of life’s most challenging situations-all while remembering to take care of myself while caring for others. I have a very special spot in my heart for all caregivers-no matter what stage of life your caregiving begins. We share a unique life experience and have such capacity for love. Remember to be kind and gentle with yourselves. The gift of our caring we are giving our care receivers is reciprocated … we too are receiving the gift of our loved ones’ vulnerability, trust and appreciation…sometimes we don’t feel this until long after our caregiving ends…but you will never regret the time you gave of yourself and the opportunity you had to share your love.

    1. Thank you Julie for taking the time to write such moving, thoughtful comment. And thank you Dominique, Linda, Susan, Jodi, Karen, Sarah, everyone who has left a heartfelt message today; your words are what makes That’s Not My Age so special.

  10. A truly inspiring post for everyone! Finding the joy in the everyday is, for me, the true happiness. I’m not in the same position with my parents ( yet) but likely will be one day soon.
    Thanks for opening the discussion with this wonderful post!

  11. This is inspiring! I must add that, among my friends, careers have been curtailed and heart’s desires not pursued due to the needs of their parents. They want to be responsible but, at the same time, are called on to make crushing sacrifices. Alzheimer’s is especially difficult, people don’t tie in a tidy few years and many families do not have the funds for pay for full-time caregivers. Now, my generation faces this challenge with our children — it would break my heart to see my children have to give up (or, at least, curtail) their lives that have taken many years to build while I take ten or fifteen years to die — and, that’s how it works for so many. I’m proud of my children and want them to enjoy the fruits of their labors.

  12. I agree with many points that Saba makes. We had to sell my mother’s property and any valuables, which she had fortunately, to raise the funds for nursing care. The whole social care situation is a minefield. And not resolved in any way. Yes one lives in fear of a repeat in one’s own life and the impact on the younger generation. Not sure what to do about this.
    And yes many dreams and ambitions have to be set aside along the way. I coped by going to yoga classes and day weekend retreats when I could. And cinema excursions where I could walk there and back and sit in the dark alone watching the film without anyone asking anything of me. But overall living day by day in the now trying to extract quality from that : a bright sunny day, flowers in the park and garden, Spring blossom on the trees.

  13. What perfect timing for this article! I took care of my mother who died last month, after going down hill with vascular dementia and heart issues, for two years. Having hospice come in was a godsend as well. Currently taking care of my 88 year old father who also has dementia and is slipping away. It was a wonderful experience with my mother, and tempered with our deliciously black sense of Irish humor, we made it through with a lot of laughter. Her last days on this earth we had the door to her room open so she could her the cacophony of noise from her family. I shall be looking in to the books and authors. Thanks from North Carolina!!

  14. Seeing the number of comments on here full of people’s stories shows just how huge an issue this is. I was one of you and Alexia’s FJN students at UCA from 2010-13, and missed a big chunk of second year when I went to stay with my grandmother and help her care for my granddad in his final weeks. I was there when he passed away, at home, as he wanted.

    I’ve now gone on to work in the charity sector and recently started working for Carers UK – so it’s come back around again! There are at least 6.5 million unpaid carers looking after someone they love in the UK and yet we rarely hear about it in the news. Carers UK has an online forum with thousands of people supporting each other with solidarity and advice. It’s sad that this affects so many people but heartwarming to see everyone sticking together.

    Wish you and Alexia the best.

    1. Hello Laura and thank you for commenting, so lovely to hear from you! I’m so pleased that you’ve gone onto such a rewarding career – and agree, it is heartwarming to see such solidarity.

  15. This is such a timely, relevant post for so many of us. I am currently standing on the edge of a precipice as my 84 year old father has quite advanced dementia and is currently looked after by my 84 year old mother who has one or two health issues herself. I know that the time when they will need a lot more help from myself and my brother and sister is fast approaching. I am divorced so I have to support myself; I still have a mortgage to pay, so whatever happens I won’t be able to give up work. It worries me. What will happen and how will we all get through it? To hear of the experiences of others makes you realise that you are not alone.

  16. Hi Alyson,
    I left my banking job in London and returned to Denver, Colorado USA last year. Sadly my mother passed away in January 2018 unexpectedly. I thought her ongoing dementia might take her eventually, but it was a stroke. We are heartbroken. I used to sit at my window desk in one of the high towers in Canary Wharf and imagine what it would look like, feel like, to be able to go and visit my Mom anytime – just pop in to see her at her assisted living apartment. My brother was my mother’s guardian (angel) on the ground, but I suffered for years with guilt and anxiety asking myself if my 2-3 trips to the USA each year were enough. I finally extracted myself out of London and experienced a wonderful 6 months with her on a day to day basis. She was beautiful, funny and good fun to be with. I had an AHA moment when on one sunny afternoon, as I walked from my apartment to her place, I recognised what it felt like and looked like to ‘just pop in’. It was an amazing feeling. The best decision I ever made. I miss her terribly, but my brother and I were with her all the way until she passed. I am so thankful I had that opportunity. One thing which has reassured me is that there are many caring hospices/individuals/nurses/doctors/celebrants/chaplains who are doing remarkable, loving care for end of life. I would like to share the following. We had a blessing and an anointment at our mother’s bedside the night before she passed. The celebrant used beautiful rose oil for the blessing/anointment and the room filled with the scent of roses. Very moving. I asked what oil had been used and this is the website http://www.anointjourney.com. Others may find this useful.
    Thank you for this insightful post.

  17. On a trivial note I was looking at Vogue.com on Best Dressed at London Fashion week. And there you were Alyson in green jumpsuit and navy velvet blazer under a blue coat.
    I tried to forward this link to you by email to info@thatsnotmyage.com
    No success. Email bounced back with error message. You might want to look into this problem.

  18. Thank you Alyson, and everyone who commented. It is indeed good to feel one is not alone. In the last three years, I have been caring for my mum, who has Alzheimer’s; my father, who had a very complicated case of colon cancer in the last year, which significantly accelerated his own dementia; and my physically and intellectually disabled sister – because my parents cannot take care of her any more. All this while trying to overcome my fibromyalgia, and to not neglect my own children who also need help sometimes (my youngest has Asperger’s). I cannot stop working as a full time university professor – which means about 70 hours per week, more than what is considered full time in less demanding careers – because I’m also financially supporting both homes, and paying for my father’s 24/7 live-in nurse. I don’t think I’ll be able to retire a day before the maximum age – that’s in 10.5 years.

    I found that what helps is the same things that I’ve learned after losing my children’s father years ago (see
    * Take good care of yourself – or you cannot take care of others.
    * People around you want to help – let them! Asking for help is no shame, either.
    * Get all the info you need before making decisions.
    * Finally – yes, enjoy the good moments life gives you, and laugh about it all!

    I wish you all good health and all the strength you need – and many good moments.

  19. Yes, this is an issue for our age! En route from my life in California 14 years ago to a new life and partner in Australia, I spent four months with my aging mother, helping her move out of the home she’d shared with my late father and into sheltered accommodation. She was beginning to show signs of dementia then. We hadn’t been that close but this time together was poignant and lovely as I cared for her. Precious moments.

  20. Most of us will have to care for aging and failing parents. For twelve years my husband and I cared for my mother who had Alzheimer’s — for eight years in our home and for four more years when she was in a nearby nursing home. She and my husband’s father passed away within eight days of each other in late 2015. Those twelve years were the most stressful of my entire life.

    And now, three and a half years after my dear husband was diagnosed with lymphoma and after caring for him through three rounds of chemo and two rounds of radiation, I am mourning the unbelievably painful loss of his death only 37 days ago. His loss is like no other I have ever suffered.

    I can offer to others in similar circumstances two insights I gained while caring for the two people I loved the most: (1) Somehow find the courage and the discipline to put your own needs first, even before the needs of those you love for whom you are caring, for they will also benefit greatly from the strength you gain through your own self care and (2) live each moment in that moment, for that is where we create our most precious memories and where love blooms even greater.

    I send to everyone grappling with these responsibilities and your eventual losses my best wishes for your strength, self-care, and love.

  21. To Susan Turnbull: I was in a similar situation. My father was a patient on the floor where I worked as a charge nurse; my supervisor moved me upstairs to an upper floor position during that time before he agreed to move to hospice care. I visited on breaks and afterwards. It isn’t easy at all. My mother’s decline at home was rapid and shocking; there were only a few days to quickly set a plan in place in a very small town with absolutely minimal resources. I question myself often after many years about whether my care was ‘OK’ ; I did know the hospice team and they were wonderful in caring for my father. Since these contrasting examples occurred to me I have discussed my thoughts with my family as I become older so that they will hopefully be able to cope better when and if they become caregivers.

  22. These stories are so incredibly moving. I have long thought it would be my job to help shepherd my parents from this life to whatever, if anything, comes next. I didn’t have to do that for my mother, though, as she died suddenly of a massive heart attack 16 years ago. And my father lived exactly 14 days from diagnosis to death, from acute myeloid leukemia, with which he was diagnosed last year tomorrow. Me, my niece, and hospice cared for him nonstop during that time and it was the most intense, emotional, and exhausting period of my life. Now, the only parent left to me is my mother’s second husband, my beloved stepfather, who turns 90 this year. He currently lives alone, and is thankfully sharp as a tack with no serious health issues. Although he never complains, I imagine he’s terribly lonely. Which is why my husband and I have asked him many times to please come live with us. But he always refuses. He’s very blunt: “I have lived my life, you live yours.” Fortunately, he has enough money for care, in home or otherwise, and he claims he’ll be honest with us when he feels he can no longer do for himself. Up until three or so years ago, he did quite a bit of traveling. But he’s stopped, due to being a little unsteady on his feet. Mostly he stays home and reads and watches movies, his routine broken broken only by the occasional trip to the store, a visit from a friend, my twice-a-week phone calls, and our monthly lunches. Every three months or so, he’ll accept an offer to spend a long weekend with us, but we can’t get him to stay longer. I just hate to think of him all alone . . .

  23. Given what I read here, my year of being in charge of my mother’s move from her Southern California house of 30 years to a memory care place near me, due to stage 6 Alzheimer’s, was nothing. And yet it was excruciating. She had to be separated from my stepfather, he went back to Sweden, he died, mom fell and broke her hip, had to move to a new place, had multiple trips to the ER, pneumonia…

    And yet she’s been healthy for a year now, and although I’m still in charge, I’ve had time to recover and be with her in her decline, good days and bad days. She has the financial resources to be wonderfully cared for, her sister lives nearby, as do my brother and one sister, we are lucky now that first time of crisis has passed. I feel for all of you in it now, and those who are about to dive in. We really need a handbook, and there isn’t one.

  24. I’m moved to read all these accounts. Thanks for sharing descriptions of the challenge of caring for elderly parents. When you are living it the experience is somewhat lonely even when surrounded by family. My siblings were far away and came to see my mother scarcely.
    Now I’m more than ten years the other side of this experience I feel much better. But reading these accounts made me relive the strain and sense of responsibility. Good luck to one and all. And I second the comments about so-called me time. Very important to feel light hearted and happy even in brief bursts.

  25. My mother endured a long 5 year decline with Alzheimers disease. Music was a saving grace for both of us and I will always have a place in my heart for the song Somewhere Over The Rainbow. We would sing it together often. Those were the only lyrics she remembered after she had forgotten everything else .
    If anyone finds themselves being the sole caregiver, please try and get as much help as you can. Self-care is vital for the very hard work you will face.

  26. Thank you so much to Alyson for raising this and to all the contributors for your insights. Reading all contributions humbled me; brought tears to my eyes; and made me realise that I am not alone.
    I have been caring for my mother for 10 years now and I can truly say, it is the most rewarding and fulfilling role I have ever undertaken/experienced.
    Thank you for sharing.
    Peace x

  27. I started reading these emails when the phone rang and a friend is now telling my husband that her’s just died from Alzheimer’s complications. It’s hard not to say, “It’s for the best”. I tended to my mother as she went through the same. Best wishes to all out there. May they solve this Alzheimer’s puzzle…before I get it!

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