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Coping with the bit where your parents are still alive, but not emotionally part of your life

(35 Posts)
CMOTDibbler Mon 20-Apr-15 14:53:07

Bit odd this one. My parents are still physically here, but mum has dementia and no interest in anyone, or speech to express it if she did recognise me, and I speak to dad every day but its all for him and he's not interested beyond the very superficial about me/dh/ds.

In the other day when I was having a bit of a wobble, I realised that the only people really interested in me and my life were dh and ds.
I know this is more than some people have, but being in this place where so much of my life and emotional energy is taken up with my parents with no recriprication is really hard.

Any words of wisdom?

Lottapianos Mon 20-Apr-15 14:58:56

I don't know about words of wisdom, but I have tons of empathy for your situation. Mine is slightly different in that both parents are healthy, and not elderly (in their 60s), but are narcissistists which means they have no real interest in anyone but themselves. I have given up on having any kind of meaningful relationship with them and have reduced contact with them significantly. They occupy a huge amount of space in my head but I get nothing from them.

It can feel very lonely and I do get jealous of people who appear to have close, loving families. I find it helps to think of all the good things I have in my life and all the reasons I have to be grateful, but also to allow myself to feel sad and angry when it hits me. Like today smile

Huge hugs for you x

CMOTDibbler Mon 20-Apr-15 15:35:30

That must be really hard Lotta.

Yes, I get jealous of those families out together (dhs parents are around, but ds is 12 years younger than the youngest of the other gc and have lost interest) when we are out as the 3 of us again.

It is good to acknowledge the anger and sadness I agree

Marshy Mon 20-Apr-15 15:48:50

My mum died 2 years ago. In the 2 years preceding that I was more there for her than the other way around as she was physically frail and developing dementia . I considered that more than fair exchange for the many years she had put in always being there for me.

It does somehow feel as if my family has become much smaller since she died. I miss her a lot but I don't miss the worrying about her and I now have time and energy to devote to remaining family and good friends.

Dumbledoresgirl Mon 20-Apr-15 15:59:13

CMOT, I understand totally where you are. My mum has dementia, not to the point where she doesn't know who I am, but she gets very confused by every day situations and her physical mobility is declining too. My dad is fine in himself but totally ground down by having to look after my mum. They have always had a tendency to bicker - I am sure they love each other deeply, but we are an argumentative family generally - but with my mum's dementia, every day seems to be a battleground.

If I ring up, I either get my dad off-loading his concerns onto me, or my mum, waffling in a not always comprehensive manner, endlessly repeating stories from one phone call to another.

I sound like a bitch. I don't mean to, but on a purely selfish level, yeah, I have lost the support I used to have from them. They never ask about me or my dh or my children, beyond a very cursory enquiry and then, if I try to say anything that is going on in our lives, I get very little/nothing back.

I understand why - I really am not the bitch I sound here - but the loss to me is still there. In the past, I relied on my parents for advice. Now I don't even tell them when there is a problem because I don't want to add to Dad's burden and Mum would just waffle about something unrelated in her childhood.

I feel as though I am grieving without there being a death, if that makes sense?

Dumbledoresgirl Mon 20-Apr-15 16:01:05

I meant comprehensible not comprehensive.

And yeah, re-reading my post, I sound like a bitch. blush sad

Lottapianos Mon 20-Apr-15 16:11:31

'I feel as though I am grieving without there being a death, if that makes sense?'

It sure does sad You don't sound like a bitch at all, far from it. Its a very real loss. In some ways, I think this kind of grief might even be harder than grieving a death - you can talk to other people about a death, and they sort of get it, and rally round you, and offer support and shoulders to cry on, and all of that. The loneliness with this kind of grief is dreadful flowers

twentyten Mon 20-Apr-15 16:16:02

Hi CMOT and dumbledore- and others(cant read all names on ipad) I really feel for you and send my sympathy and flowers It is like mourning when they are still here. DMIL had dementia and died last october- I am afraid I felt very relieved as it felt like a huge weight had been lifted- calls from her when she was at home at all hours, homes/hospitals etc- sometimes it just feels "not fair!!!" Dh feels he lost her years ago.
Its also feeling used up and empty- I am still looking after my DM (90 last week but at the mo in pretty good shape) who does show some appreciation-a new development(!) and hopefully dd will be off to Uni in the autumn-so I feel the need to find some more outlets for me-and time for friends who have been neglected-and the need to find new ones.
I think we need to find ways to "parent" ourselves- and grieve for what we do not have whilst doing what we can without it consuming us.
Guilt is unnecessary- here is a great place to say the unsayable. Dumbledore-you are NOT a bitch!!!

missorinoco Mon 20-Apr-15 16:20:42

I don't have any wisdom, CMOT, and appreciated your words when I posted last week.

I am starting to realise this is a new phase of my life. Although she is still here, the role my mother once had in my life has gone, and the pain I feel is part of the bereavement reaction to the loss there is.

Please don't think I am trivialising the death of a parent - my father died many years ago, and I know this is not the same. However, the emotions, and the process I am going through are the grief reaction, but it is grief for a different sort of loss.

So I am giving myself the liberty to feel sad, and alone, and accept that this is something I will work through. Last week I was curled up in tears after calling home, this week I was fine. Next week will be another story.

Dumbledore - you don't sound like a bitch. I put the phone on speaker now when I call home and reply as needed. I felt better knowing it wasn't just me that did this.

Marshy Mon 20-Apr-15 16:38:14

I think losing a parent to increasing frailty and dementia before they die is very hard and that realisation that they now rely on you rather than the other way around is sad and draining. It certainly took a toll on my emotional and physical health especially when combined with working full time and being there for teenage dc.

I don't think anyone here sounds like a bitch or any other awful thing.

It's taken me 2 years to begin to emerge from my health issues and grief following my mum's death. I feel better now than I have for ages. Be kind to yourselves people.

CMOTDibbler Mon 20-Apr-15 18:21:21

Thanks all, its good to hear from others who understand. As Lotta says, people understand death and will talk about it, but people around me seem to be terrified of dementia and would like to completely ignore it.

Dumbledoresgirl, you are so totally not a bitch. For 5 years now its been MN that has kept me sane(ish) while talking to my parents. Because they need to talk, but giving someone your full attention while they tell you the same disjointed story for the 20th time (and can't be distracted) just isn't possible. And its far, far better to do something else than to not call at all (like my brother).

Dumbledoresgirl Mon 20-Apr-15 21:32:19

Thanks everyone for saying I am not a bitch. The thoughts and feelings I have re my mother are not always ones I would be happy saying out loud. I wrote a whole post just now, but I have deleted it as it all became a bit dark.

flowers to everyone else going through this sad time of life.

twentyten Mon 20-Apr-15 21:35:15

Darkness is ok to postthanksthanks

CMOTDibbler Mon 20-Apr-15 22:07:23

I have dark thoughts too.

twentyten Mon 20-Apr-15 22:15:38

Oh cmot. You have so much on. thanksthanks

PacificDogwood Mon 20-Apr-15 22:23:31

Sympathy and hugs from me too, CMOT - it is totally a terrible loss and a grief to bear even (or maybe particularly?) in the absence of a death.

My gran died before Christmas, very severely demented, at the age of 101. The last 10 years of her life had been awful: for her and for my mother. I grieved from my gran who I used to be very close to growing up about 5 years ago and I have been dry eyed since she died because the woman she used to be had long and very gradually departed.

My parents are now in their 70s and 80s and I find our roles have reversed. My dad's memory is getting worse and worse and it can only go one way, can't it? sad
My mum is younger and sprightlier, but a worrier, so I don't want to 'burden' her with my/our problems (much as they are only v mundane, day-to-day issues) so we are a bit reduced in what we talk about.
I suppose this situation is not at all uncommon and it is important, I think, to acknowledge the loss and the pain that goes with it.
thanks

dementedma Mon 20-Apr-15 22:29:23

Dad with dementia here. Hospitalised while we wait for assessments and try and find a care home. It is very very hard.having the same conversation over and over and over and over........."hi dad, it's me. Demented. Demented. Your daughter Demented. No, I'm not (insert random name). I'm Demented. Your daughter. No, (insert name) is your sister. I'm your daughter. Demented...." Ad infinitum.......

twentyten Tue 21-Apr-15 09:31:06

brewbrew To everyone. It is so tough- relentless.

whataboutbob Tue 21-Apr-15 13:13:56

Well I am not sure this will help. I remember those telephone conversations, and also finding an old itemised BT bill of Dad's showing him ringing me up to 20 times a day including up to midnight, but thankfully mostly while I was at work. And the rambling answerphone messages (towards the end I'd often just press delete). Now he is in no way capable of ringing up, and can just about say a few words into a handset if his carers talk him through the whole thing. He knows me as a person, but not I think as his daughter.
But, I have battled to get him a good care package and am lucky with the current carers. I am no longer called by the police at work because he's been found somewhere or has attacked a member of the public.Things have got easier as the dementia has progressed, and it feels odd acknowledging that. I don't see him as my Dad anymore, maybe that's been my way of protecting myself, he's someone who I have a repsonsibility towards.
Sorry about this ramble but I wanted to say that in a weird way things do sometimes get better.

Needmoresleep Sat 25-Apr-15 10:21:05

CMOT you have had a dreadful two years. Is the grieving a form of distancing. If you accept that you have lost your mother and your relationship with your father is very changed, the next crisis will be less difficult. There is no going back or curing. Dementia is a terminal illness, and to be absolutely callous, once your mother's brain has gone she is largely gone. Yourrole is now as advocate for your mother and manager of her care. Your poor dad is presumably so tired, emotionally and physically, that he has nothing to give you.

I went through a period about 18 months ago where I did not want to see my mother but felt I was grieving for the person she was. It's now easier. The care side is pretty sorted, so like Bob I don't need to be as involved in the day to day stuff. And I don't really see her as my mother any more, but rather as a spirited toddler who I have responsibility and a level of affection for. So pleasure comes from watching her watch Punch and Judy on the beach. (She liked the bit where the crocodile eats the baby.) Or from the brightly coloured ornament that I knew would appeal to her magpie taste.

Physically she is well so I assume I have up to another decade of this. If she were to die tomorrow there would be a void, but this would be more than balanced by relief that she (and I) had avoided the end stage dementia. I am now not bothered by the repetition, instead using it to assess her level of well - being, or by the verbal aggression which I found so difficult in the early stages. She has lost her power to hurt me emotionally.

Like twentyten I am starting to focus on me. Do has just over a year of school to go, and ds is already at University. After all those busy caring years I too am reaching out to old friends and making new ones. It feels good.

Distance, honestly, is good. I will make sure she is looked after. I visit reasonably regularly, though by buying some buy - to - let near her and by renting rather than selling her property, I have ensured that visiting my mother is often not the focus of a 250 mile round trip, and so have a chance to see her socially without having to drag her out for some sort of appointment. And I no longer worry. She has told her priest she would like to die. Both he and I understand.

twentyten Sat 25-Apr-15 11:39:16

Need more what a wise and insightful post. The magic of mumsnet is we can share our deepest fears and guilt and thoughts with strangers- and hear the wisdom of those who have trod the path we are on ahead of us. Birth, schools, bereavement- illness.
And learn how to handle things- and know we are not alone.
For me it is calmer now- dm seems stable and more appreciative- after a few home truths, and we have had some joy- a 90th party I arranged which she loved- and fil is stable and well cared for. I know the dark days will come again so I am trying to build up resources for when it comes. And find joy where I can.
brewbrew To all.

bananaskin123 Sat 25-Apr-15 12:52:38

How I can empathise. I'm sure I am much older than many of you. My dear old mum has been in a care home for about 15 months and is 99! Previously for about six months we had been through the endless phone calls, hallucinations etc. Then she had a fall which landed her in hospital. She was seen by the care of the elderly consultant, had all the tests etc and her recommendation was that she should go to a care home. She felt she had early stage dementia. I really don't believe this has deteriorated as most days you can have a conversation with her on her terms, ie what's happened at the Home, but never asking us anything re ourselves, grandchildren, great grandchildren etc.

I just miss my "old" mum who was my friend as well as mum. We spent an incredible amount of time together and she was so supportive to the whole family. Up until she was 94 ish she was completely "with it".

I agree with everyone who said its a "living" death. I hate every minute of this strange existence. Wonder what she thinks too in her most lucid moments. I am sure she feels we have abandoned her but at least in the care home she is safe and we can have some sort of life before we are too old to enjoy it.

Delarenta Sun 26-Apr-15 21:17:21

This thread has spoken to my heart, it is liberating to read others put things into the words which I cannot bring myself to say out loud. I too feel like I am grieving for the wonderful Mum I once had. She was the epitome of organisation, affection and cleanliness. Now at 68 she doesn't even flush the toilet or know what day it is. The deterioration has been rapid, this time 2 years ago she was absolutely perfect and such a source of practical and emotional help to me as I coped with my severely disabled little girl and my high pressure job as a Headteacher. I feel jealous when I see my friend's parents thriving in retirement. I have a constant guilt that I am not being a good enough Mummy/Daughter/Wife/Head. I feel terrified about the future.

However, I am lucky that my Mum's younger siblings really help out and my big brother, seeing the strain I was under, has taken a much more active role. A saving grace is that my Mum is now quite chilled and content with her little life, as a previous poster has said she too has gone past the anger/lashing out stage.

Sending love and strength to everyone else out there in the same situation xx

twentyten Sun 26-Apr-15 21:38:41

Hi delarenta.
Wow you have a huge amount on. This is a great place to share the unsayable. thanksthanks

EggsAreNotFromCows Wed 29-Apr-15 19:28:25

This thread really resonates with me. I find visiting my dad really difficult at times. I just don't know how to fill the time up. After I've prattled on for the first 15 minutes and asked him everything pertinent, I just don't know what to talk about.
He has no interest (and maybe not much understanding) in what I am talking about. There's not enough going on in his life to talk much about. I think he likes me being there, but I don't know what I should be doing. He sits in his chair for most of the day, watching tv for a bit. Should we be encouraging more or if he's happy enough leave him?

Does anyone have any ideas? Any simple games that might work? I just feel he has such a small life now, but is that just how it is?

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