Being the strong supportive family member

End of life
1

My father is, as he wished, in Sue Ryder rooms at the end of his life, cancer in various organs in his digestive system. He’s 91. My mother thought it quite amusing and almost insulting to be paid to be his carer, she said she was doing her usual role as a wife, but over the last month or so she wasn’t able to cope, particularly when he’d fall over. She’d phone me as the emergency service, and after the first time, when I finally got him up from collapsed on the toilet, but then he fell and we had to wait for the paramedics (who were wonderful), I managed to use the paramedics’ advice and get him up off the floor and back to bed a couple of times. After a week-end of this happening repeatedly, the Rapid Response Carers became involved, and were great, coming in four times a day, but after a few days, the district nurse visited and decided he needed to go to hospital to find out why his legs were giving him so much pain. My mother understood he would be in for two or three days, but once they had a chance to monitor him, they realised how much he had deteriorated, and we now know he won’t be coming home.

My mother has been in to visit him most days, there’s a very convenient bus service. He went in on the Monday, on the Friday a doctor rang my mother and then me to explain the situation and said we could both visit. I took her in on the Saturday, he was awake and quite responsive. I video-called the family WhatsApp group I’d set up, and luckily almost everyone was able to join in, he could see them on my phone and seemed to recognise them. Since then, he’s been getting weaker and has now stopped eating and drinking, he’s on a morphine drip and is sedated as he was getting agitated.

Yesterday, my mother sent a message while she was with him, saying he was just staring up at the ceiling saying nothing. She didn’t want me to join her and went home, but I visited him after I finished work. He’s got so much thinner and, as she said, no response. I played him a couple of his favourite songs and sang along with one in the way I had done as a child. Today, she asked if I’d go in with her, and I’d had the idea, when awake during the night, of asking the family to record messages for him. He responded slightly when I played them, I think my mother was more impressed. I’d also made a playlist of his favourite songs, and I’d play one, then we’d talk about memories. When we left and told the nurses what we’d done, they said they’d look out some CDs of similar music for him.

After each message from my mother, or each visit I make, I type a ‘report’ to the family WhatsApp group. I’ve not included my mother, so she isn’t overwhelmed by messages (at nearly 88, she does well with technology), and so we can mention how she is.

So, I support her. I act as the information point for the family. And then I’m home on my own with three cats. I obviously came over as upset at one point during my report as my daughter phoned me, from Berlin, saying she was giving me hugs. My work colleagues are being very understanding. But today I’m struggling to focus on work, I keep crying, and feel so alone. And tomorrow I’ll put on the strong confident daughter act and take my mother to see him again. But right now, I’m a mess.

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Hello Dancer Daughter. We are so sorry to hear your story. I’m glad that you’ve been able to share how you are feeling here, and I hope that you find the community a good source of support.

Please know we are here for you, keep posting and hopefully our lovely members will have words of support and comfort. Although most are bereaved and coping with their losses, and are grieving.

Take care, stay safe,
Audrey

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Hi Dancer Daughter, I know exactly how you feel. On New Year’s Day my 91 year old father suddenly lost the use of his legs. He was also falling out of bed and was clearly unwell, but he was adamant he didn’t want to go to hospital and made me promise not to let him go.

By 3 January my mum, my partner and I were all worried and exhausted from trying to carry him around, pick him up in the night etc, and he was starting to be confused so I called 111. The paramedics came and wanted to take him to hospital. He said he didn’t want to go as he would come home in a box. My mum said she wasn’t getting involved, so it was left to me to try and persuade him. He eventually agreed to go “under protest”.

My mum is hard of hearing, so on top of a fulltime job it was left to me to phone the hospital every day to chase progress and then let her and my sisters know what was happening. One of my sisters is retired and the other works in a hospital, but still it was left to me. I was also trying to look after my Mum and support my son who is in his final year at college.

My Dad didn’t have a mobile, so we were unable to see or speak to him. The fact that I had sent my Dad to hospital against his will haunted (and is still haunting) me.

After a couple of weeks the hospital phoned us at midday on a Friday, to say they could discharge him but as he needed care they were sending him to a care home, unless we could arrange a care package by 6 o’clock that evening. After a few stressful and emotional hours, we had to concede defeat and let him go to the home. I then spent a week battling with Social Services to get a care package in place, whilst also dealing with the home, supporting my family etc Fortunately my manager at work was understanding.

I managed to speak to Dad once when he was in the home. He was complaining that he had been dumped. My heart broke for him.

The day before my Dad was due to come home with the care package in place, the home called to say his health had deteriorated and they had returned him to hospital. After a week of trying to treat him, we were asked to agree to end of life care. I saw him for the first (and last) time on Thursday, over a month after he was first admitted.

I’m putting on my brave game face for my mum and my family, but in private I can’t stop crying. I’m eaten up with guilt about my part in sending Dad to hospital and my inability to get a care package in time to prevent him going to the home. I feel that I failed him when he was depending on me. I’m also resentful that my sisters have done so little, but still keep telling me how much they loved him.

This is the first time I’ve admitted I am not coping. I can’t worry my mum, and my partner is tired of me beating myself up over it, so now gets impatient if I try and discuss it. I’m dreading adding the need to arrange a funeral on top of everything else.

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Hi Daughter_of_Ron
Thank you for commenting and sharing, and I’m glad it’s helped you to say how you feel. It’s not good to bottle things up. I broke down with depression in 2004, basically after years of keeping going and keeping it all inside, it was only three and a half years ago that I was well enough to go back to work. My brother sent me a message this evening, asking how I’m doing, and saying he thinks I’ll need counselling again. I’m hoping that posting here will negate that need.

It must be awful to feel that your father wasn’t in agreement with his care, we’re lucky in that we’d discussed this as a family when he was first referred to Sue Ryder, and even recently he stated that this was where he wanted to be. You’ve reminded me that, apart from odd irritations, my family are all in agreement. I could do without those who can’t visit telling us how often we should visit and what we should do! That’s when I snapped at them, and they’ve been better since then.

My mother does wearing hearing aids - except says she can’t manage them with her glasses and a mask, so doesn’t wear them to hospital, meaning she can’t hear what staff are saying unless they’re very clear. You’ve given me another good memory of my father - he generally has always refused to wear his hearing aids, as he claims he can hear fine, but we all mumble! We’re clinging on to the happy memories, luckily, there are plenty.

You did your best, that’s all anyone can ask, and you cared. I’m sorry there was so much stress involved. Hold on to the happy memories.

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I had the phone call from the hospital at 4.20 this morning. So the worry is over. I took my mother in to see him, and spent the morning with her, contacting friends and family. We both feel relieved and so pleased that yesterday’s visit was so positive. I’m tired, despite having a nap this afternoon, a bit numb, and glad that there’s no more phone calls and paperwork to do until Monday. My next big challenge is writing the script and officiating at the funeral. I promised I’d do it for him.

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It will be six weeks all but a day on Friday, when we finally are able to hold my father’s cremation service. It now feels as though it’s all starting again, it’s hitting me that he’s not with us any more. I wanted to self-harm just now, I’ve rarely wanted to do that for years. I feel dreadful for wanting to snap at my mother when she sent me a message as I left work, late, today, about one of the readers saying he’d not received his copy yet. I told her yesterday I was delivering it after work. I know she’s more forgetful now but it just got to me. Not helped by the fact that the reader lives off the road that was my childhood home, so I was in tears driving along that and past our old house. On Saturday, I read through the script out loud, including the readings, and timed it. With the songs, which total exactly 10 minutes, it’s 15 minutes, so that gives us 5 minutes leeway for any delays/people speaking slower/me losing my professional front and collapsing in tears. I’m working at home tomorrow and not looking forward to it, it’s better when I’m in the office with people around me. I’ve had dream where my parents were in front of me, and I knew that Daddy couldn’t be there, but my mother believed he was so I went along with it. Then another dream where he’d only just died and I had to go through it all again.

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Dear DancerDaughter,

With your father’s cremation coming nearer, I can understand that you feel like the grief is starting all over again. It will probably bring back lots of memories and as you say, the reality of him not being here any more. You write that for the first time in years you wanted to self-harm. If you managed not to, you should feel very proud of yourself, but if you have please do not be angry at yourself and ask for help.

You write about your mum’s forgetfulness. I have read somewhere that this can happen to people when they are grieving. I can understand that her message was not what you needed and made you annoyed. It sounds that you were able to stop yourself from snapping at her which is admirable. I have found that when I was struggling with my emotions, even the smallest things that normally would not bother me, would upset me and make me react out of character.You have a lot on your plate, so don’t be too hard on yourself.

I hope that on Friday everything will go as planned and that you will find the strength to go through the day and that you and your mum will be able to support and comfort each other.

Jo

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Dear Jo

Thank you.

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The funeral went very well. I’m glad I had two musicals breaks, when I could compose myself and then continue. I was surprised and a bit hurt that my mother didn’t cry: later she asked us if we’d found the sound over the microphones muzzy. No-one else had: she wasn’t wearing her hearing aids so didn’t hear me properly. However, I sent her a copy of the script, as she wanted to send it to some friends, and she said when she read it, she was in floods of tears. I had a lot of praise - the funeral director said I should take it up as a profession. I’d ordered afternoon teas for my mother, my son and daughter-in-law, and that was lovely. Then I took my mother home, stayed with her for an hour or so, before going home. I was exhausted the next day, even had a nap but was still tired. Despite the fact that, to my relief, I had control of the curtains around the coffin, and I could actually see it, there’s still part of me that doesn’t quite believe he’s gone. I wanted to see him in hospital, partly to be sure there was no mistake, so I really do know. Hearing about ‘stand on your doorstep for all those who died from Covid’ was too much when I was driving to work and I was in tears. I didn’t stand on my doorstep. It’s helpful to have work to keep me occupied and wear me out. I’m now waiting for a local restaurant to deliver my dinner. I’m too tired to cook.

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You have done so well. Your father would have been so proud of you.
Good idea to have your dinner delivered. You must feel tired, both physically and emotionally.
I think you mentioned in a previous post that you have 3 cats. We have 2 cats, and it amazed me how sensitive they are to our feelings. They often seemed to sense when I was sad, and one of them would come and sit on my lap. Have you found that your cats are doing that? I sometimes found it easier to talk to them than to people.
Don’t be surprised if in the coming days and weeks you will go through lots of different emotions. I remember how until the funerals of my parents had taken place, it did not really sink in, but after that it suddenly hit me. Take care and keep posting whenever you feel like it. There will always be someone here who will listen and understand.

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Thank you for your reply, Jo64, I thought I had replied to you, but now realise I didn’t, I’m sorry. My three cats are very unempathetic, so no support when I’m feeling low, but they are around for company and that has always helped a lot.
It’s four months today since Daddy died, most of the time, I’m fine, just odd moments when I think about him and get a bit tearful. Although a couple of weeks ago, watching The Repair Shop, they played Rock Around the Clock on a repaired radiogram that had been made by the lady’s father, and that set me off to the most painful crying I’ve ever had, with lots of images of my father passing through my mind. I sent a message to the family WhatsApp (the one without my mother) asking if anyone could talk, and my aunty responded. She’s my father’s younger sister, and was very helpful, just talking about him and how we’ve both felt. I also had messages later from other members of the family, so I felt supported. Foolishly, I told my mother about it when I saw her on the Sunday to take her out to a gardening event, and she said I should have phoned her! I don’t feel it’s fair to burden her, the one who was married to him for 65 years. Later, she messaged me saying how sorry she was that she’d not supported me, and the next time I saw her, she gave me a letter from Sue Ryder with lists of phone numbers, saying she doesn’t need them. I told her I use this forum, and she was surprised but says she doesn’t need any support. She really does seem to be coping very well. She’s busy de-cluttering, she says. Last week I took her to see my grandsons, now that we’re all allowed inside together. Of course, it was a lovely day so we spent most of it outside, ironically, and although she’s said a few times how nice it would be to cuddle them, they’re nearly 2 and 4 and don’t stop for cuddles! She was very entertained by them - and me, doing whatever they wanted.

I’m mainly posting now though because I had a dream last night, the second time I’ve had one like this, where there’s an event, the first time it was family, this time it was half work/half family, and my father is there. In the dream, I know he’s dead. I know everyone else knows he’s dead. But he talks and interracts with everyone, and they respond as though he’s alive. In last night’s, afterwards I commented to my daughter about it and she said it’s sweet. The first time, he and my mother were sitting on chairs behind a table in our old family home, I walked in and was shocked to see him (they moved from there in 2006!) and that my mother was talking to him and he was talking back. My dream self knew he was dead and couldn’t understand how and why he was there. The same yesterday, but work colleagues were there (apparently I had resigned and was taking a break over the summer, in fact I’d resigned just before Daddy died and took a week off before starting my new job in February that was mainly filled with hospital visits that I didn’t tell my mother about until I’d got the all clear results). But this time, there was one scene with colleagues and Daddy (he never met them), then another with him sitting beside a little coffin, who he said was his friend, and that he was saying goodbye.

We’ve not yet scattered his ashes. My mother was worried when she had a letter from the crematorium and didn’t understand it, I rang them and they were lovely, saying they were keeping him safe until we were ready for him. She’d signed to say we wanted to be present when they scattered his ashes. They told me people are waiting until restrictions are eased. I then discussed this with the family, who came up with all sorts of ideas for what we could do. I’m wondering if it’s time. Or do we do as my daughter suggested, and wait until we can have a celebration of his life with all the family present (my daughter lives in Berlin, my brother in Zimbabwe), and do the scattering then.

It doesn’t feel like the end yet.

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Dear DancerDaughter,

Thank you for taking the time to post again. I am glad to read that after 4 months you are doing much better most of the time. Yes, there will always be moments when something triggers a memory or brings back the tears. Like you, I watch the Repair Shop. It is such a good programme, I noticed that a lot of the people who come on the programme have suffered a bereavement, and how restoring an object that has belonged to their loved one has so much meaning to them.

I am glad that you can call on your family for support when you need it. My sisters and I use Whatsapp too and I have found that such a blessing. We started the group when our dad died, but like you we never included our mum in it. It sounds like your mum is coping very well.

Dreams can be a very strange mixture of fact and fiction. I can relate to what you describe, about seeing someone alive in your dream, when at the same time your brain knows they have died. The first persons I lost where my grandparents. As a child I often stayed with them in the holidays. They lived in the countryside and I loved them very much. My granddad was still in my dreams at least 10 years later and never changed.

What to do with ashes is not something I ever had to think about with my parents, because they had both chosen for burials. My mother-in-law died in November and she had chosen for cremation. Due to Covid restrictions only a small number of people could attend the service, and her sister was unable to travel from Yorkshire. My husband and his 2 brothers have therefore arranged a scattering of the ashes on their grandparents’ plot at the end of July, mainly to give their aunt and her family the chance to be there. I think it will help them to have that opportunity, and I suppose it is the same for your wider family. The when and how for you will probably depend on who wants to be there and if and when they can travel from Germany and Zimbabwe. If you did not want to wait that long, maybe you could consider setting up a video link when you do the scattering.