Mum with Alzheimer's - how to grieve

[WickerShit]

Mum was diagnosed with Alzheimer's 6 years ago at the age of 73. She's now in a secure unit being assessed and medicated. In the longer term she will be moved into residential care.

I live 100 miles away and have three children and a full time job so currently am only visiting once a month or so.

Any real semblance of the mum I knew has gone. She was permanently distressed and anxious and sometimes aggressive so is heavily medicated now. Sometimes she is completely non-verbal, other times she rambles but none of it makes any sense. She appears to be either unhappy or catatonic most of the time. Last time I visited she just stared at me looking terrified then started silently crying. I tried to hold her hand/hug her but she just flinched and moved away from me.

I am an only child and never knew my biological father. I have a step-father but that relationship has always been problematic. We were never close. I was very close with my mum, all my until her illness.

Also my step-father is really struggling and when I call he cries. I'm sympathetic but there's a lot of historical resentment there and I'm in pain too so I can't offer him support.

I miss Mum so much. I need to grieve and move forward but how can I do that when she's still alive and suffering? I can't think about any memories if the past as it's too painful. I keep trying to forget about it but every now and then it just overwhelms me. I have to look after my children. If she had died I feel like I could at least move forewords and go through the grief process but I'm stuck and I have no idea how long this situation is going to go on for. And I have to keep calling my step-father as I don't feel like I can abandon him but each call is so painful and awkward. And I have to keep visiting her and the thought of having to keep visiting her and keep calling him for month or years is destroying me.

Any support articles I read don't seem to apply to me. I can't just sit quietly with her or hold her hand she's not calm or in any way content. I dread going but I also can't not go.

If I had a normal loving relationship with my step-dad we could support each other but that's not the case. Dealing with him and his needs is just another burden. I'm so resentful of it. Just dealing with the situation with my mum and trying to come to terms with my feelings would be hard enough but now I'm stuck in a pretend father/daughter relationship with this man which is something I never never wanted.

I have had counselling lots of it and talked through all the above but all I've had is sympathy and understanding and being told to be kind to myself, take time out etc. Which is fine in the short term but there's no end in sight.

Thanks for reading this far. If anyone has had a similar situation and has any advice that would be much appreciated.

I have no advice to give, but I am so sorry. It is a hideous disease, my Dad suffered for a short time before he died (thankfully) of pneumonia. He was in a secure home and it was just a dreadful time and visiting him was bloody awful.

I wish I could say something to make it easier for you.

I understand and feel your pain with your mum.

regarding your step father, why do you have an obligation to him? A difficult / negative relationships isn’t just one sided, he will be aware of the awkwardness and be contributing to it if not responsible for it. You have no reason to support him. He was your mums choice, not yours.
youll need to make some difficult decisions as you need to prioritise your mental health. But most of all you need to do what’s best for you without loading yourself up with guilt.

I have to keep calling my step-father [..] And I have to keep visiting her

I would question both of these assumptions.

For each one, look at the benefits and disadvantages to you and to the other person.

Does your stepfather get a benefit from the calls, or does he also find them difficult? Do you always call him or does he call you? If they are helpful for him (and he's a decent person) then it may be appropriate to keep them going despite your difficulties, but you could maybe tweak the details. Could you reduce the frequency, or call only about specific issues rather than for general chat? See it as liaison with a gellow adult caring for your mum, rather than a pretend father-daughter relationship.

If visits to your mum distress both you and her, what are they for? Ask the staff how she is after a visit compared with her baseline on day when you aren't visiting. It may be that there's a delayed benefit, but if not then would it be better for both of you not to go? You could still do regular check ins with staff - either in person or by phone - to keep on top of her care plan and any supplies she needs with less emotional stress for both of you.

I feel so sorry for you. This kind of grief is common, by the time my mum passes away I felt I had done all the grieving but without people realising or acknowledging it.

https://www.alzheimers.org.uk/get-support/help-dementia-care/grief-loss-and-bereavement

It's hard and must be especially hard if you feel you are doing this all alone.

You've also had a lot of change quickly, and there will be more, and probably quite quickly too.

Whatever you do, and this can be really hard, try not to feel guilt. You are doing what you can and that's all you can do.

Thanks for your replies.

No my step-dad doesn't realise there's an issue between us - not to the extent I do anyway. He came into my life when I was a child. I've been faking the relationship my whole life. He would say we have a normal father daughter relationship. He's not very clever. He's also a fantasist who creates his own narrative of the past and the present to suit his purposes. It's complex and too much to go into here. He would be very hurt and angry if I stopped contact.

Yes Ive spoken to the nurses about maybe not visiting they were very understanding. But my step-dad wouldn't be. And my step-sister (his daughter) was horrified when I suggested it. She goes every week. She lives nearby.

It's not a sudden thing it's obviously been creeping up for the last few years. When I was younger I mainly spoke to mum and he was just in the background. I expected he would die first - he is older and has multiple health issues. Then I would have mum to myself again and move her close to me etc. But then she got ill and I've been forced into this situation with no mum - just a shell where she used to be, a person who looks like her but isn't - and a one-on-one relationship with him.

Sorry if I sound callous btw - I'm
Just being honest. Something I'm
Not able to be in real life.

"See it as liaison with a gellow adult caring for your mum, rather than a pretend father-daughter relationship."

I don't want to talk to him about Mum. He's angry and says they are not looking after her properly and wants her to go home. But he wasn't able to look after her properly she was in a right state by the time she was sectioned. But if you suggest that now, he's already rewritten history that they were fine as they were and with the right meds she can come home again. He literally makes stuff up all the time.

Big hugs.
My MIL died of dementia just before Christmas. So, recent experience.
MIL was much calmer than your Mum but I think didn't particularly recognise us but didn't kick off. Visits were excruciating hard for my DH but he went either weekly or fortnightly.
This was good in as much as it kept a good line of communication going with the home and he could see if she was clean/tidy/general demeanor. It sounds like your step sister is doing a great job in that role.
The visits you do don't sound beneficial for you or her right now.
MIL enjoyed a letter more than a visit - so DH would write and include lots of photos of our pets (the thing she responded to the most)
You really don't have to visit if you don't want to, only you can decide that - there are other ways you can show your care and love.
I can see it's complicated with your SDad and again, it is up to you.
Phone calls are very hard to escape emotional outpouring from - can you email or text instead? A gradual step back may be less noticeable if you're worried about hurt feelings.
You're also entitled to say to them that you are distressed by the visiting and don't think it's in Mums best interests.
Pre- grieving is very much a thing. I suspect he might feel a little bit guilty but DH has been so much happier since his Mum died. Her being alive but not happy or well was very hard for him to witness.

You say you can't grieve and move forward, but actually what you're describing sounds like that is what you are doing - I think that might be what your counsellor was getting at. Even when a person dies grief is messy and complicated, and when it's someone as close as your mum was, it can take years.

Maybe try to reframe it - you are in the midst of grieving your beloved mother and processing the tsunami of emotions and trauma and reconfiguration of difficult family relationships that comes with that. At the same time you are working and raising a family. That's incredibly hard.

You say you try to forget about it until it overwhelms you, I totally get why you would do this but I remember being told by my own counsellor to let the feelings in a bit more and just try to sit with them. Could you carve out a bit of time each week to remember your mum, light a candle or go somewhere that meant something to both of you. It will no doubt be very very hard but maybe this would help you along the journey in the longer run.

My DF has been terminally ill for what seems like forever and I had a total wobble about it a couple of weeks ago.

I was talking to someone who had been through similar and she said it was totally normal not to want your parent to suffer and wish them gone, but she found once her parent had died it was easier to grieve for the person they once were rather than trying to cope with them being a shell of their former selves.

I'm finding the visits hideous at the moment too. It's just you're stuck in a really grim limbo.

Thank you for your replies I have been out all day but am reading through them now x

Hi OP

In case you don't know, there's a Facebook Forum called DementiaAware. Lots of people in your position on there who support each other.

I recommend the forum on the Alzheimer’s society website. So many supportive people on there who will have been through similar . More than here

How is your relationship with Step Sis? Is she someone you could open up to a bit? I get you probably can’t talk about your relationship with step dad with her.

I would definitely step back some more from the calls with him if you can

"DH has been so much happier since his Mum died. Her being alive but not happy or well was very hard for him to witness."

Yeah - that's exactly how I feel.

"Could you carve out a bit of time each week to remember your mum, light a candle or go somewhere that meant something to both of you."

I find this hard to do when she's still here. I think this is the process I want to go through but can't see it helping till she's actually died and I'm free to remember her as she was.

The complication I think in my emotions is that even before she was ever ill there were years where I felt like I'd 'lost' her. When we were younger my step-dad would be working or had his own interests so we spent a lot of time on our own together and I have a lot of fond memories from that. However as he got older and iller he was always there - I could never get her on her own. I was hugely resentful of that and already was 'missing' her. Then her personality started changing subtly at first but sure whether that was normal ageing or the start of the dementia.

And what I've found is going through all the recent practicalities dealing with the various agencies/doctors etc I feel like I'm having to pretend we are the close loving family. The lie I've been living my whole life I'm now being forced to reenact in front of all these people. We had a meeting at the hospital and my step-dad had been raging at me and my step-sister about how he was going to demand she come home with him. Things had been so dreadful we were in bits. And when I arrived for the meeting they had put my chair and my step-dad's chair together really close. Like we weee united, going to sit together all loving and close snd support each other. But I wanted to be as far away from him as I could. And I looked round at all their faces and thought they were all thinking why is she being so cold, why isn't she comforting her poor old dad.

Exactly - to be honest and without wanting to sound callous I need her to die. But she's physically healthy at the moment so I guess it could be years...

Thank you I'll have a look but I'm really resentful and angry about people who have parents who are calmer and who they can more easily sit with and connect with. My mums symptoms are so distressing - anxiety, aggression etc.

I know I'm being unreasonable by the way.

I'll have a look at these groups when I'm feeling a bit stronger

Yeah I'll check out this forum - I have read it before but never posted there. I'll give it a go thank you .

I know I'm being unreasonable by the way

No, you really aren't.
It's unreasonable to expect you to simply accept and deal with all of this without it having a cost to your own happiness and mental health.

Your Mum being out of the picture is really bringing your SF front and centre and putting you in a very uncomfortable position.

Only people who have been through how tough it is to look after our elders especially when their illness makes them truculent or simply not themselves anymore can really understand it.

I think you do need to accept that your feelings are ok and you can think about what you need too.

You aren't being unreasonable at all OP. It's very hard to cope with at all, never mind with no siblings and a step-father like yours, or rather with the relationship you have. Please don't worry about what the nurses etc think: they might make assumptions if you don't tell them differently, but they will have seen every possible variation on family dynamics and how different people react in different situations.

My MIL isn't upset / agitated, but she is gone. DH and SIL have - as best as they can - done their grieving. SIL lives very close to the nursing home. for years FIL (who visits MIL daily) insisted on a nightly phone call to "bring her up to speed' on MIL 🙄(whose condition does not change). She also got the brunt of FIL doing what your SF has done - complaining about her care, insisting that she should be at home with him (when he was utterly unable to care for her), getting angry and frustrated. She eventually had to tell her dad directly that she didn't want him to call every day, because it was upsetting her and making it even harder to make her peace with the situation. He was pissed off but got over it - he feels that everyone should be as focused on MIL as he is - and I'm really glad she managed to put that boundary in place. He is willing to put his life on hold - he visits daily, he doesn't go on holiday any more, if he misses one of his daily visits then he pressurises my SIL to go in his place (she hasn't managed to stop doing that yet). That doesn't mean that everyone else has to as well.

So if you need permission to slowly detach from your SF and to reduce your visits to your mum, you have it. He has his own daughter to be there for him. You ,and your needs, are just as important as his needs and your mums. In fact, your mums needs are being met: she's in a place where she is safe, and that's just about all that can be done for her now. And his needs are not your responsibility.

Thanks both for your messages and for everyone who has taken the time to write something here.

@rickyrickygrimes your post in particular really resonated - sounds like your FIL is reacting in a similar way to my SD.

I think I do need to start to detach - for my benefit and for my children's. I need to be fully present for them.

Thanks again x

Hmm tricky - my dad had Alzheimer’s- I did a lot of grieving before he died - do you have any POA or would everything be decided by your step dad? Also I imagine the secure accommodation is distressing in itself - the care home we found for my dad was really nice and also v supportive for both me and my mum - I think less phone calls and more texts would be better with your step father as pp have said- and really think what is best for you.

It's so difficult. Mum isn't distressed any more but when she was, visits were diabolically awful.

Could you say to the home that you are concerned about her anxiety and distress and would like them to consider referring her to the older adults' mental health team? If your mum were less anxious it might all be a bit more bearable. 💐