Sadness around end of life and the lockdown

[padawan444]

My Mum is 66 and has end stage PCA. Her decline was extremely rapid. She is in a nursing home 2.5 hours away. Prior to lockdown, she was having daily visits from her friends who kept me posted, and my brother was seeing her regularly. I managed to see her once, with my toddler and felt very encouraged by the experience, having been initially very distressed by how it would feel. I had decided that I might be able to cope with the situation by finding childcare and trying to visit her every 3 weeks.

She has lost all of her basic functions now, and has been bedridden since November. She is very frightened of being lifted by the hoist in her room, and so she remains in bed most of the time. She has not eaten any hot food for many many weeks, and barely eats or drinks at all. Persuading her to have a little bit of something she likes (usually trifle or Black Forest gateau!) or to have a sip of coffee or water takes a huge amount of effort by the carers, and I'm told that much of the time she is very angry and violent towards them. She spends most of her time screaming and swearing, listening to music or sleeping. During lockdown, I have had calls from the home telling me that they think that Mum might be going down hill due to how thin and frail she now is, and how she isn't getting enough to sustain her. I had a call a month ago, to tell me that she hadn't eaten or drank for 3 days, and they didn't expect her to last long (a matter of weeks) - but then the following day she seemed to rally.

The source of my heartache and my anguish - is that I don't know how to soothe my Mum in these extremely strange circumstances, and how to soothe myself. Mum cannot hold a phone, but an activities manager can hold a phone to her ear. I spoke to her 6 weeks ago, but she quickly became very aggressive when I asked her about eating. This experience made me fearful of calling again. I am too terrified to see my Mum on a 'Skype' or a 'WhatsApp' video call. I recorded her a few voice recordings but after she enjoyed the first one, she was too angry and aggressive to calm down enough to listen to the subsequent ones. I am too scared to ring the home to find out how she is, because I am struggling with the way this inertia is stretching on and on. I am far too scared to speak to my Mum, because her voice sounds so like the person she used to be, but picturing her as she now is, distresses me. I am frightened that she will slip away before I've had a chance to try to comfort her - and that I will feel deep regret and sadness. But I am also terrified of this new version of my Mum, and I'm scared of how the trauma affects me. I have 2 very small children and I'm finding it hard to be in the present and looking after them, whilst being so preoccupied and on edge. The guilt is overwhelming. I also worry that she is distressed and needs us. I wish I could know whether she is aware of what is happening to her.

 

[lemonbalm]

Hello @padawan444. This is so very hard and it's all made worse by this sort of limbo we are living in at the moment, but there is no point in your trying to talk to your mum if it will just be distressing for both of you. Could you send her cards? The carers can read them to her when they think it is a good time to do so, a time when she would benefit from them, and she will know you are thinking of her. I've been doing this for my mum, who has advanced vascular dementia. Skype is far too confusing and distressing for her, and it's impossible to time a 'phone call so that it works (she struggles to speak anyway). I know the thought of them being in such distress is almost unbearable but they're not alone. They have a team of carers looking after them on our behalf. I know that my mum has been screaming and scratching the carers this week, injured herself and several of them, but they still look after her and genuinely seem to love her, knowing it's not her fault. We must take comfort from that. It's the best we can do under the circumstances.

 

[DreamsAreReal]

Oh, @padawan444, that is heartbreaking, I’m so sorry you and your Mum are going through this. And your Mum is so young ? You have so much on your plate right now.

Your Mum is in the best place she can be, she is being looked after by people who understand her problems and know what to do. She is loved.

If you can do something (anything) that will help or comfort her, then by all means do it. But if you can’t then just know that if she’s like most Mums she wouldn’t want anything from you - all she would want is for you to be happy and have as good a life as you can. She wouldn’t want you to be worrying yourself to death and beating yourself up with guilt and despair. If you were in your Mum’s situation would you want your adult children to feel so unhappy? Would you want them to see you in such traumatic circumstances? I know I wouldn't. My PWD wouldn’t either.

I had anxiety and depression a few years ago and I was also worrying so much about my PWD I was a nervous wreck. CBT really helped me to see that the constant worrying and fearfulness about the future was not only making me more ill, but also wasn’t helping the situation my PWD was in. It’s a vicious circle too, the more you worry and anticipate future calamities, the more anxious and overwhelmed you feel by it all.

I hope I haven’t offended you and my apologies if I have overstepped the mark and got too personal, but life is very short for all of us and you owe it your Mum to have the best life possible. Worry, fear and guilt are natural when you love someone and they’re suffering, but don’t let them become overwhelming. Take care xx

 

[padawan444]

Thankyou so much @DreamsAreReal and @lemonbalm . I think writing everything down in itself has made me realise that I'm not being melodramatic and there is a lot on my plate. I think I do need to give myself permission to come up for air sometimes, and to put my mental health first. Its such a very odd and sad set of circumstances (my dad died very suddenly 4 years ago too) and I think a lot of the anguish is triggered by grief I still feel for him as well. xx

 

[Buttercup24]

My Mum is 66 and has end stage PCA. Her decline was extremely rapid. She is in a nursing home 2.5 hours away. Prior to lockdown, she was having daily visits from her friends who kept me posted, and my brother was seeing her regularly. I managed to see her once, with my toddler and felt very encouraged by the experience, having been initially very distressed by how it would feel. I had decided that I might be able to cope with the situation by finding childcare and trying to visit her every 3 weeks.

She has lost all of her basic functions now, and has been bedridden since November. She is very frightened of being lifted by the hoist in her room, and so she remains in bed most of the time. She has not eaten any hot food for many many weeks, and barely eats or drinks at all. Persuading her to have a little bit of something she likes (usually trifle or Black Forest gateau!) or to have a sip of coffee or water takes a huge amount of effort by the carers, and I'm told that much of the time she is very angry and violent towards them. She spends most of her time screaming and swearing, listening to music or sleeping. During lockdown, I have had calls from the home telling me that they think that Mum might be going down hill due to how thin and frail she now is, and how she isn't getting enough to sustain her. I had a call a month ago, to tell me that she hadn't eaten or drank for 3 days, and they didn't expect her to last long (a matter of weeks) - but then the following day she seemed to rally.

The source of my heartache and my anguish - is that I don't know how to soothe my Mum in these extremely strange circumstances, and how to soothe myself. Mum cannot hold a phone, but an activities manager can hold a phone to her ear. I spoke to her 6 weeks ago, but she quickly became very aggressive when I asked her about eating. This experience made me fearful of calling again. I am too terrified to see my Mum on a 'Skype' or a 'WhatsApp' video call. I recorded her a few voice recordings but after she enjoyed the first one, she was too angry and aggressive to calm down enough to listen to the subsequent ones. I am too scared to ring the home to find out how she is, because I am struggling with the way this inertia is stretching on and on. I am far too scared to speak to my Mum, because her voice sounds so like the person she used to be, but picturing her as she now is, distresses me. I am frightened that she will slip away before I've had a chance to try to comfort her - and that I will feel deep regret and sadness. But I am also terrified of this new version of my Mum, and I'm scared of how the trauma affects me. I have 2 very small children and I'm finding it hard to be in the present and looking after them, whilst being so preoccupied and on edge. The guilt is overwhelming. I also worry that she is distressed and needs us. I wish I could know whether she is aware of what is happening to her.

 

[Buttercup24]

Hello I can relate to your feelings at this difficult time. My mum is 97, vascular Dementia and end of life. Mum lives in Extra Care housing, and the care staff have an office downstairs, and are on duty 24/7.
Before the lockdown I was visiting mum three times a week from here in Essex, and would spend the day with her. She would sleep a lot but did open her eyes at times, and was also alert enough time for me to show her family pictures, sit and hold her doll Jessica and sing too her, also holding her hand and stroking her head was comfort to her.
Mums friend an elderly lady on her won would frequently go into sit with her and chat to her.
All this ceased when lockdown came into place. My only contact with mum was a couple of times the care staff would send a picture, and me phoning up each ay to see how she was.
Weather it was right or wrong six weeks after not seeing her and being told how frail she was I masked all up and did go and visit of course social distancing. The decline and frailty to me was so noticeable and mum just lying there staring into space some of the time, but not knowing me.
When I left the emptiness there, and then came the tears. I have now been going to see mum every Sunday, and nice again weather right or wrong I have held her hand, and I can see from her face the comfort it gives her. These visits have been very short, and even her 97th Birthday two weeks ago I was not allowed to go on the day,and this is the first time I have not spent with mum on her birthday.
However last week I have an email from the housing manager telling me I am in mums bubble, and can now visit for the time I want to but my brother is not allowed to.
I now feel our time with mum is slipping away and it does need to be looked at on a bigger picture," People need a human touch, not rep tape", do other feel like this?
I would rather then my mum be lying in her bed gazing around with no one there, that her friend can go in and sit and hold her hands, sometimes risks have to be taken, rather then a persons mental wellbeing and loneliness being affected.

 

[Mydarlingdaughter]

My Mum is 66 and has end stage PCA. Her decline was extremely rapid. She is in a nursing home 2.5 hours away. Prior to lockdown, she was having daily visits from her friends who kept me posted, and my brother was seeing her regularly. I managed to see her once, with my toddler and felt very encouraged by the experience, having been initially very distressed by how it would feel. I had decided that I might be able to cope with the situation by finding childcare and trying to visit her every 3 weeks.

She has lost all of her basic functions now, and has been bedridden since November. She is very frightened of being lifted by the hoist in her room, and so she remains in bed most of the time. She has not eaten any hot food for many many weeks, and barely eats or drinks at all. Persuading her to have a little bit of something she likes (usually trifle or Black Forest gateau!) or to have a sip of coffee or water takes a huge amount of effort by the carers, and I'm told that much of the time she is very angry and violent towards them. She spends most of her time screaming and swearing, listening to music or sleeping. During lockdown, I have had calls from the home telling me that they think that Mum might be going down hill due to how thin and frail she now is, and how she isn't getting enough to sustain her. I had a call a month ago, to tell me that she hadn't eaten or drank for 3 days, and they didn't expect her to last long (a matter of weeks) - but then the following day she seemed to rally.

The source of my heartache and my anguish - is that I don't know how to soothe my Mum in these extremely strange circumstances, and how to soothe myself. Mum cannot hold a phone, but an activities manager can hold a phone to her ear. I spoke to her 6 weeks ago, but she quickly became very aggressive when I asked her about eating. This experience made me fearful of calling again. I am too terrified to see my Mum on a 'Skype' or a 'WhatsApp' video call. I recorded her a few voice recordings but after she enjoyed the first one, she was too angry and aggressive to calm down enough to listen to the subsequent ones. I am too scared to ring the home to find out how she is, because I am struggling with the way this inertia is stretching on and on. I am far too scared to speak to my Mum, because her voice sounds so like the person she used to be, but picturing her as she now is, distresses me. I am frightened that she will slip away before I've had a chance to try to comfort her - and that I will feel deep regret and sadness. But I am also terrified of this new version of my Mum, and I'm scared of how the trauma affects me. I have 2 very small children and I'm finding it hard to be in the present and looking after them, whilst being so preoccupied and on edge. The guilt is overwhelming. I also worry that she is distressed and needs us. I wish I could know whether she is aware of what is happening to her.

I recognise some of the things you describe. One thing stands out from your question is the feeling of needing to soothe and comfort your Mum. If your Mum is anything like my Mum she could possibly be soothed for a minute or two maybe but what might make that happen would be very hit and miss, and may not be possible, and definitely not for more than a minute or two, then she could go in a rage or upset again. I have spoken to my Mum on the phone once since lockdown, one of the nurses took the phone to her and held it for her. I spoke for a few minutes and told her I loved her. She was ok for a while then started saying she wished she was dead. I have sent cards and poems, but she had trouble seeing nowadays and I very much doubt she can still read.
My comfort is that the staff are amazing and know how to best care for her. Her behaviour is normal to them and they accept her the way she is.
I really dont think you can soothe your Mum. This is a very hard illness and your Mum is nearing the end. Do you ever phone the Alzheimers helpline or have any chats on the phone with the care home? They are likely to be able to help. I also think it would be a good idea to have a chat with your GP about how you are feeling. you are taking on a lot during a very challenging time. You also mention guilt. Please talk that through with someone, its good you recognise it but it will make yyou feel even worse. You have nothing to fgeel guilty about (but its underatandable that you do, its par for the course).
Anguish, heartache, being scared etc are not what you need with 2 small children to care for. This may sound cruel but please let the care home do their job and trust that they know what they are doing. If you explain to the home manager how you are feeling, you can ask them to maybe only call you once a week, or at a certain times, rather than you being on call all the time. Personally, I realised I was trying to fix everything and control the situation, and of course thats impossible. Once I relinguished control, it was easier.

 

[Grannie G]

It is heartbreaking indeed @padawan444 and nothing anyone can do to make it better. I`m so sorry.