Are my feelings about this normal?

[Ankleblisters]

I just typed the whole background and then realised it would become a very long post with a lot of needless information.

My lovely mum has fronto-temporal dementia. I first noticed symptoms first in her late 50s, about 12 years ago. I knew in my gut it was dementia because I had always feared it. Everyone else was harder to convince.

I've been her main carer for years and have been caring for her full time since the start of the first lockdown 5 years ago. My father is here too (he lived overseas until 2019) and we are working well as a team and coping.

She has been doubly incontinent for 4 years, her speech is very limited and 95% unintelligible, she is increasingly passive and always totally confused and her balance and spatial awareness are very poor. But we are coping fine and she very clearly feels safe, loved and content. It's hard work but it feels manageable.

For years she has been my absolute top priority and all of my focus and energy and attention has been on keeping her safe, healthy and happy at home. I'm fine with that. I adore her.

But I don't think I feel what I'm meant to feel? My sisters, both of whom are incredibly busy with work and see us fairly infrequently, both seem keen to discuss anticipatory grief and the sadness they feel at seeing her like this. Both frequently cry about the situation. We recently had a party for my father's 70th and several close old friends wept about her condition. Especially those who haven't seen her in a long time. Everyone wanted to talk to me about how she was doing (it's literally the only question I ever get asked tbh!).

I just felt a twinge of annoyance at the friends' tears - especially as some of them haven't bothered to keep in touch or see her. I don't feel annoyed with my sisters, I feel compassion and sympathy. But I don't feel like I'm in touch with the same sadness. My only real feelings about it are huge love and tenderness for my mother, and protectiveness, and responsibility. The friends said, and my sisters often say, they just want her back as she used to be. But I feel like I don't really even remember the old her - I'm so wrapped up in what she wants and needs now and responding to that.

Am I a terrible person? I always thought I was quite emotional but I didn't cry or feel sad when she was diagnosed, whereas the others were devastated and felt we'd been robbed of something. Is it all going to hit me one day like a bombshell and leave me reeling? Should I be bracing myself? They talk a lot about how we are all grieving but I don't think I am? I'm not sure I know how to grieve, I'm too busy to do so and I don't really want to! My sisters both talk a lot about how unfair it is and how unlucky we've been but, while I totally get why they feel like that and would never invalidate it, my feeling is that this is just part of life and other people have it far worse.

I've sort of lost the thread of what I'm asking with so much typing and deleting. I guess just: What am I meant to be feeling?

It's still a really long post with a lot of needless information, sorry!

You feel in auto mode. Also after so many years you may be facing her death as a release. I didn't cry at all when either of my parents died. I don't know why. I think there was so much to do and I was fortunate that both deaths were swift and in hospital. What you do for someone when alive will always trump what happens when they die. Be kind to yourself you are simply getting through.

Wow I could have written this myself but for my Nan. I have sort of become detached to the illness in a way and when my family cry after hard visits with my Nan I just feel indifferent. I just feel incredibly grateful that we still have her as limited as she is and I try to take the good days and the bad. My family dwell alot when my nan has bad days and become upset at how she is etc ( I totally get why) but I also don’t feel the same upset. Sending love it’s so hard to watch a loved one go through this illness.

You feel what you feel. Anticipatory grief is normal. But so is a focus on the practical rather than the emotional - especially if you are doing the bulk of the caring.

You've had years coming to terms with incremental progressions, rather than confronted with a sudden step after a gap.

You may grieve after her death, or you may feel that you (and she) have been liberated.

There is no 'meant to' about your feelings. (In your position one of my feelings would definitely be irritation at performative grief from those who haven't bothered to stay in touch or help, so that's absolutely normal!)

I can relate a lot with what you are saying about not remembering old Mum before the illness took hold. I know what Mum was like, the old anecdotes and sayings are still in my head, but the memory her and how she acted normally, is not so much forgotten but locked away for later, I don’t think I actually have access to it until when (or if) she dies. Occasionally I will dream that she has recovered and is back to normal and will be like “oh yeah, that’s who you were” but it kind of fades when I wake up. It’s the same with other people getting upset. One of her friends called me and asked to speak to Mum and I said I would try and ring next time I was at the care home and put her on the phone. Well every time I do visit it’s just not appropriate, she’s asleep, or talking gobbledygook, or aggitated. Mum’s friend is sweet but very emotional and I don’t have the strength to explain why the call might’ve be difficult. I don’t think I could cope with trying to sympathise with anyone if they started crying about my DMs dementia, especially as I have been left to deal with it for the most part on my own. I dread to think what people will think of me when (and if) she does die, I can’t imagine crying, and I don’t want to have to see anyone else crying and expect sympathy from me. I’m kind of numb.

I think your huge love for your mum is trumping any other feelings, and that’s wonderful.

I understand I think.

I have my DM who has advanced dementia, cared for by my DF. I find it terribly difficult to see her and especially when she has a serious hospital stay and it seems as though we may lose her, and then she rallies again. I just find it cripplingly emotional and struggle to engage because I can't cope with it. My DF finds it just fine and doesn't understand at all. I think about pre-grieving a lot because it hits me really really hard whenever the roller coaster takes a big turn.

Conversely I care full time for my ASD DS who is out of school with MH problems and I don't find that upsetting really. I enjoy his company very much and accept him for who he is. I fight hard for every tiny epic win each day, and take massive pleasure in all the successes, even if they are quite small. I sometimes am really taken aback when I see the concern for him strangers eyes, because I don't really see his problems as much as perhaps I could.

I think that for the full time carer, it just becomes a sort of symbiosis and the situation becomes normalised. For others outside, it is not normalised at all and can be quick shocking for them.

I think for your question about whether you should be bracing yourself - it probably depends on your constitution and whether you are getting enough sleep and rest. Sleep is criticaly important. I had a hard time when my son was small and I did burn out very badly at the end. I thought I was fine, but it became clear that I had been living on adrenaline for a long time and I went crunch when he slept through. I don't know how we can predict if others are in that situation. I can't even predict it in myself.

It sounds as though you are very solid tbh, and you will probably be fine.

If your relatives are leaning on your for emotional support I think it's totally legitimate to ask them to go and find a bereavement councillor. It is not your job to cope with their emotions. Conversely, you can't expect them to be the same as you. You need to accept that they are losing or have already lost your Mum, probably over and over again, and are coping with that, while you still have her.

That's the really complicated thing about dementia. People lose the loved person at different rates and at different times. It's really confusing that way.

Take care there and I hope things work out kindly for you.