Love you Dad

[jc141265]

Hmmm, I'm in the TP section that I previously couldn't face...

Anyways, here are my thoughts, that I wrote down earlier, about my recent loss...

Have you ever seen a Ulysses butterfly? It’s not an ordinary butterfly, it has to be the king of butterflies. Vibrant, royal blue on black, large graceful wings, bigger and much grander than any ordinary butterfly. I’m watching one now, fluttering near me. I think its life end is drawing near though, every wing lift seems to be an exhaustive effort, it appears to be so tired, yet at the same time so strong and I wonder if this is a sign, a sign sent by my father. It seems so wrong that something so beautiful and majestic is failing, but it is and there is nothing I can do to save it, like there was nothing I could do to save him.

It’s been three weeks now since my father died, passed away, left this earthly plain. After so many years of waiting and expecting it to happen, after so much drama, after so much heartache, I am still reeling from the shock of what a non-event his ‘passing’ was. One moment he was here, the next he was gone, life snuffed out in the blink of an eye. Not just any life either, a life we fought hard for, for over a decade. Where did he go?

So I look suspiciously at random but beautiful butterflies wondering if somehow he still could be here, must be here. When the smoke alarms in the house start going off for no reason, or my glasses case mysteriously disappears and then later reappears in places we had already searched for it, when a willy-wagtail sits on the mailbox and chirrups at me noisily and boldly whilst shaking his tail feathers gamely, I want to hope, I want to believe, that somehow, someway, that there is still some way HE can affect my life. But, I don’t really believe.

He, is gone. I’ve lost him and I don’t know if I will ever, ever see him again. I want to hope, but life is going on around me, and he remains gone. I suspect I will never know the truth about whether he might still be here now, until they day I too meet my maker, and even then maybe I won’t see him, maybe there will be nothing, or even if there is something, maybe it will be like this life, where I don’t remember anything before it. It makes me sad to think that perhaps I will meet him in the next life and I won’t even know how much I loved him.

My right hand, it feels at times so…what is the word? Bereft? I just want to reach out and be able to touch him, touch his warm, hairy arm, pull his fingers apart from their locked position and wrap them around my own, feel him fighting the dementia demons that are sending jolt after jolt of tiring spasms through his body, slowly wearing him down. Feel him holding on. He was so strong, so determined, I felt he was fighting them off for us. I couldn’t have expected him to go on fighting, twelve years, well that’s remarkable determination. He was my superman, and even though he’s gone, I don’t feel as if he failed...

 

[dizzydeb]

Hi Nat, Big Hugs I'm sorry how sad you are right now. I FELT your words and have tears in my eyes. Your Dad would want you to keep strong and live your life to the full. You have a void in your life and when your ready you will be able to fill the space a little at a time. BUT Dad will still be there in your heart and memories. Your Dad will be proud and thankful of how much love and cared for him.
Love and best wishes x

 

[sunray]

I still have my Mum in care and my husband who is in respite this week but your post resonates with me because that is how I felt after I lost my Dad in 2000. I simply could not believe that he would not walk back in the door. Even after the funeral I thought it must be part of a bad dream, surely my big strong Dad could not be dead and buried.

He was the strong one, Mum was the weak one. Dad was never sick until the cancer came in 1993 and he fought it for seven years and died aged 87. Weak little Mum who had had so many things wrong with her is still going aged 92. She has severe dementia, no speech and is going blind with macular degeneration.

Life sometimes makes no sense. But when she is gone, like you do now, I will feel that terrible gap, the space where she should be.

(((hugs))) from Sue.

 

[sad nell]

Dear Nat . you have been in my thoughts,. The love and care you gave your dad was an inspiration to many. I understand when you say about peeling dads fingers open to hold his hand. You held his hands through out this difficult journey and your dad knew he was loved. keep strong my love Pam

 

[DeborahBlythe]

He was my superman, and even though he’s gone, I don’t feel as if he failed...

Dear Nat, Hugs across the continents to you. Your dad didn't fail, he coped the best he could and so did you. I bet you were his Super Daughter.

I always think my mum is around when I hear a blackbird sing. (Well she loved nature a lot anyway, so I guess she helped that blackbird to survive in some small way and even if she isn't actually here, her actions were important).

I think your dad is around you still in lots of ways. May you feel his love for ever. He is, after all one of the people who made you.
Much love,x

 

[jc141265]

Thanks all for responding. Deb & Kassy who said my post brought tears to their eyes, I am sorry for your sadness too, and although I wrote my post dry eyed, when I read it to my partner, I suddenly found myself bawling my eyes out, struggling to get each word out. Pam, it meant so much to me that you understood what I mean about unlocking Dad's hands. Deborah, your suggestion that Dad might have thought of me as his SuperDaughter brought a smile to my face, I hope so. Sue, I felt you really understood my feelings of disbelief and shock.

Today I am thinking about how amazed I am, by how deeply I have been affected by Dad's death. I have had a lot of relatives in my life die, at least five aunts or uncles and all of my grandparents, I have also had a few friends die, though not close friends...and yet this is the first time I have been so dumbfounded by death.

I can only think that this is because Dad was such a major part of my life and because I spent twelve years wracking my brains for a fix to this horrible disease. I had thought that when Dad died it would be a great relief, finally I could give up and know at least that I had tried my hardest, but yet here we have his passing and instead of acceptance, I am still (perhaps I am just in the habit) trying to think of way that this can't be.

Perhaps it is also because it wasn't possible to communicate with him in any way that you could be certain you were succeeding for about 6yrs. He couldn't speak and although he could make noises and sometimes move you never knew if his sounds or movements were voluntary or involuntary. So essentially I have been trying to make a connection with him for half a decade and so it seems my brain doesn't seem to think death should be any barrier to that, so it keeps on trying.

Its four weeks today. Wednesday, full of woe as Mum told me on the day, but I already knew that, as I was born on a Wednesday and she always told me I was a child of woe. How it happened? I was at work and got a bewildered sounding mother on the phone telling me she 'I think Dad is dead, he was asleep, but I can't wake him...'. I then rang up my partner and relayed the news, ' Can you come pick me up, we need to go to Mum's, Dad...appears to be dead' that's how I put it, even right then I was having trouble believing by the sounds of things.

Then we drove for 30 minutes (usually takes 45 minutes) as fast as we could up to my parent's farm. We had to park the car at the front paddock gate because the ground was too boggy to drive through and then I had to run/walk through prickles and mud, sloshing up to my knees at times, with the house and the sight of the ambulance in the distance. Oh the ambulance is here I thought, maybe he's not dead. But then as I got closer I saw the ambulance people sitting around on the front porch and I knew there really was no hope.

I got to the house and yes it was really all over, Dad was lying in the bed, but he was gone, though still warm at that point. I kept finding that I had a need to walk over to him and touch him, to check, to hope, but he remained gone, yet he was there. He was gone, but still there. That's the bit I can't get out of my head, how he could have been in that body earlier in the day, but somehow he left. You and I can't do that, how did he do that? How? How? How? How does life just disappear from a body like that?

We were lucky, in the end the ambulance offered to take Dad's body to the hospital as it wasn't going to be possible to get an undertaker to get to the property. They don't usually transport dead people.

I saw Dad again a few days later, his body I mean, at the funeral home, and he was all straight again like he used to be, not crooked and twisted anymore, but my sister, brother and I, cried and cried over him. We all felt that he was in the room with us then, but that just made us cry more.

I don't really know why I am typing this, some say, you tend to do this when you are grieving, its a way to get things out. But anyway there it is for today, my out.

Still missing him,

 

[sunray]

touched by your post

Nat, I was touched by your post. I guess life is hard to understand and death as an extension of life equally so. My understanding of death is that people die between one breath and the next one which is never taken.

I used to be a "hospital visitor" so did the chaplaincy course in a local hospital. My patch included Accident and Emergency and the Coronary Care wards at weekends when the regular chaplain was not there so I have been present when death has taken place. I would describe it as a sudden silence.....a time when the struggle is over and peace begins.

I hope you find some comfort in the knowledge that the person you love goes beyond the struggle he had been experiencing. What you believe about the after-life is subject to so many factors but to my mind the soul/person travels peacefully on alone. I am not usually very imaginative, practical to a "t", but I also believe in a lingering in some people too. I have experienced that gone-and-yet-still-here feeling with people I didn't even know. It amazed me at the time.

I hope there is a fulfilling life ahead for you and the mourning process starts to lessen now and instead you remember the good times you and your Dad shared.

Sue.

 

[tam572000]

Nat,

I am so sorry for your loss and understand how you are feeling. I lost my beloved Dad to Lewy Body Dementia just under 4 weeks ago. He suffered so badly and towards the end I kept thinking he won't be suffering anymore soon and it would be a release. I too didn't think that I would be as upset and devastated as I am. I miss him so much and just can't believe that he is gone.

I wake in the morning thinking the last few weeks have all been a dream but reality quickly kicks in. I feel Dad around me all the time and like you say things have happened that obviously are Dad letting me know he is here with me.

I too miss holding his hand, telling him I love him and spending time with him. I lost my Mum just over 4 years ago to osteoporosis. I live alone and although friends and family have been very supportive it is very difficult when I am alone at home and have thinking time and reflecting time.

Everybody keeps telling me it will get easier but I feel at the moment as though I am living in a bubble and things aren't real.

I am sending you my love and hope that things will ease for you soon.

Take care

Tam

 

[jc141265]

Thanks Tam & Sue for your understanding words.

 

[sylv]

love ones are always with us

My heart goes out to you all - but I really believe that you will feel a presence for quite a while. I think the love we have doesn't die, the person does but not the love. Eventually the feelings of presence disappear but that's because the love has helped us feel stronger and supported us through a tough time. Your love between you has not died - its still as strong as ever and though you cannot see them know they are well and 'whole again and be happy they are not still in the wilderness of dementia.

My father-in-law died 9 years ago it was 2 years before the presence lessened but even now if I'm down something happens that reminds me of him, I beleive its a sign that the love is still very much there, right or wrong, but it comforts me.

So let the signs comfort you too whether real or not, cos love never dies.

lots of hugs to those who are grieving xx

 

[Little Macky]

I'm not particularly religious and so struggled with the death of someone close many years ago. This little piece really helped me. I hope you get some comfort too.

Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me
Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.

Canon Henry Scott-Holland, 1847-1918, Canon of St Paul's Cathedral

 

[jimbo 111]

Hmmm, I'm in the TP section that I previously couldn't face...

Anyways, here are my thoughts, that I wrote down earlier, about my recent loss...

Have you ever seen a Ulysses butterfly? It’s not an ordinary butterfly, it has to be the king of butterflies. Vibrant, royal blue on black, large graceful wings, bigger and much grander than any ordinary butterfly. I’m watching one now, fluttering near me. I think its life end is drawing near though, every wing lift seems to be an exhaustive effort, it appears to be so tired, yet at the same time so strong and I wonder if this is a sign, a sign sent by my father. It seems so wrong that something so beautiful and majestic is failing, but it is and there is nothing I can do to save it, like there was nothing I could do to save him.

It’s been three weeks now since my father died, passed away, left this earthly plain. After so many years of waiting and expecting it to happen, after so much drama, after so much heartache, I am still reeling from the shock of what a non-event his ‘passing’ was. One moment he was here, the next he was gone, life snuffed out in the blink of an eye. Not just any life either, a life we fought hard for, for over a decade. Where did he go?

So I look suspiciously at random but beautiful butterflies wondering if somehow he still could be here, must be here. When the smoke alarms in the house start going off for no reason, or my glasses case mysteriously disappears and then later reappears in places we had already searched for it, when a willy-wagtail sits on the mailbox and chirrups at me noisily and boldly whilst shaking his tail feathers gamely, I want to hope, I want to believe, that somehow, someway, that there is still some way HE can affect my life. But, I don’t really believe.

He, is gone. I’ve lost him and I don’t know if I will ever, ever see him again. I want to hope, but life is going on around me, and he remains gone. I suspect I will never know the truth about whether he might still be here now, until they day I too meet my maker, and even then maybe I won’t see him, maybe there will be nothing, or even if there is something, maybe it will be like this life, where I don’t remember anything before it. It makes me sad to think that perhaps I will meet him in the next life and I won’t even know how much I loved him.

My right hand, it feels at times so…what is the word? Bereft? I just want to reach out and be able to touch him, touch his warm, hairy arm, pull his fingers apart from their locked position and wrap them around my own, feel him fighting the dementia demons that are sending jolt after jolt of tiring spasms through his body, slowly wearing him down. Feel him holding on. He was so strong, so determined, I felt he was fighting them off for us. I couldn’t have expected him to go on fighting, twelve years, well that’s remarkable determination. He was my superman, and even though he’s gone, I don’t feel as if he failed...

Hello jci265
Today is the first time I have noticed your post
I wish I could express my thoughts as eloquently as you did
Now. 10 months after my wife died reading your thoughts took me back,and you have described almost every thing that was in my thoughts then and still remain
Many wellwishing friends tell you that the pain eases after a while , but I could not possibly have known how much it hurts and for so long
I hope things are getting alittle more settled for you now
Be assured that other members of TP who have also shared your sorrow will have you in their thoughts
jimbo 111

 

[jc141265]

Brain vs Heart

Hi Jimbo and others thank-you for your kind words.

I am doing better, in fact can it be that I am upset that I am coping just fine now. I hate not thinking about Dad 24/7 like I used to. Isn't that weird?

I mean it's good that life is going on, and I seem fine, but it seems so wrong at the same time.

I want him back, I would even want all those really hard times again if I could, where watching him losing control of his mind was so distressing, just, to have him back for a moment. Just to be able to hold his hand, to look into his eyes, smell his Dad smell.

But, my brain knows better than my heart that none of that can be so its not going there, until I forced it to write these words down for a moment and now its complaining loudly to me that this won't do me any good, and wouldn't do Dad any good either if my wish meant he had to go through all that again.

I thought the brick walls would be gone when Dad passed, but they're at my back, and at my sides and I can only go forward, but they follow me, continue to follow me. I guess that's better than when they were always in front of me. It should be better, but sometimes I'd just like to climb over the wall and spend time with him again.

Oh my brain got really cranky then with me, because tears began to well up. Can't do nothin', can't do nothin' it mutters...my heart says 'but i love him so much' and so they go on, arguing with each other, whilst I go to work each day, and get on with life.

Makes me think that depression isn't a weakness (although extremely harmful to your life) it just means your heart is stronger than your brain and that's not something to feel ashamed of, just something you have to be aware of, because in this kind of circumstance we need to let our brains win out, even if that seems wrong, because the brain is right, 'Can't do nothin' except take another step forward or we let the disease win twice.

 

[Amy]

just, to have him back for a moment. Just to be able to hold his hand, to look into his eyes, smell his Dad smell.

Understand how you feel Nat.

Love Helen

 

[together]

Nat, not quite got to your stage yet - only 6 weeks since I lost mum but so much of what you say today makes sense, the heart versus the head, what a battle it is. Everyone at the moment seem to be telling me to'look forward' but it is so so hard isn't it? Recently I've felt so muddled but reading your post has been such a help thank you, will try to keep working on the head little by little. Love Katherine xx

 

[jc141265]

Thoughts

I realised something the other day....

My partner was away in a nearby city for the day, and I missed him. I can sit at home with him in another room and I don't miss him, because I know he's near. I can go to work and I feel a little bit of missing emotion, because he's not as close as usual, but that's alright, I'll see him in the evening. But when he was 100kms away I could really feel his absence.

Then I did the realising bit. This is why I miss Dad so much more than I did before now that he has passed away. Although others would say he had already left the building when he was in the last stages of his dementia, although he seemed to drift away to other worlds for hours at a time when he was alive, now he is gone and so unreachably gone. This is not like before.

People say that the person is gone, when they see someone with severe (or even not severe at all )dementia, but they don't really know what they are talking about until the person has passed away. Yes they can be gone to some extent, but they are most definitely still here when you compare that absence to the great big hole they leave when they actually pass away.

Its unbelievable really how hugely a live person is still here, no matter what their mental state when you compare that with death.

I frequently hear people in the early stages of dementia saying how they hope for a quick death of their loved one. I understand that emotion but at the same time it blows me away that we can so easily dismiss the very big person that person is whilst they are still here.

It also makes me want to scream at them when so often I hear that sentiment in what are actually quite early stages of the disease. I want to scream, YOU DON'T KNOW WHAT YOU HAVE, YOU DON'T REALISE HOW GOOD THIS IS, TAKE IT WITH BOTH HANDS AND DANCE WITH JOY AT WHAT YOU HAVE!!!!

But then I go quiet because I know that regardless one day they will eventually be where we are anyways, and I haven't forgotten how hard it all is and I understand that they don't want their loved one to suffer, but then...

...life is all about suffering one way or another, its always there if not today, you know it will come again someway, somehow...(P.S. Life is also about joy, it is just as sure)

...and in the end I reckon for about the last 3-4yrs of Dad's life he didn't suffer anymore than the rest of us.

His suffering was bad for someone who wasn't used to the life of dementia, but to him, he seemed to get used to it, and he had heaps of other joys in his life, that seem little to us, but he got a big kick out them, my mum singing to him, his dinner being spoonfed to him (yum yum yum!), his daughter showing up and grinning at the amazing man that was her father, his grandchildren sitting on his lap and brushing grandad's hair...his other daughter scolding him for ignoring her...he got a real kick out of seeing how much she wanted him to pay attention to him, evil old beggar!

How could we have wanted to steal all that from him?

But I know, not everyone gets to the point that they can shrug at their own dementia, Dad was probably a bit special in that way...but it can be done...

And still I think, don't you write me off if I one day get dementia folks, don't you assume you know whether my life is worth living, don't think that even though in the early years I may have feelings of suicide myself that there can't be joy later...

I am going to be a big person to the day I die and I am going to leave a huge hole...even if I am screaming and crying and yelling I am living and you will hear me roar.

Don't wish silence on this life before it is done...

Just my thoughts...

 

[Tender Face]

Just wanted to say, Nat, that struck such a nerve with me – several in fact.

Love, Karen, x

 

[Pollyanna]

that struck such a nerve with me – several in fact

Me too!

x

 

[jc141265]

Hopefully not a bad nerve...I didn't mean it as a criticism of anyone who's done or is doing the hard yards....I know what it is to wonder if death will be a kind release and I acknowledge that for many perhaps it is, was or will be...I just know however for a few people who don't want to be written off, who want to fight, who see life as something that they cherish no matter how painful it is, that it is unfair for them to be told that they are a lost cause and would be better off dead. We all make and must make great concessions to grieving family members and their desires for the end to suffering, but my opinion is that no matter how cruel it may seem or be to ask folks to try and consider that such a life is still worth something, some people have to do so for the small group of people who might want to keep fighting who might still want to be valued despite their disabilities, people who don't find nappies and dribbling as undignified when it is a great achievement for them just to continue being present in this world...

Sometimes I think we let ourselves indulge too much in the 'oh the horror of it all' feeling (and I too am guilty of that, and as a result forget that this person suffering is still a person. And I do think that we are justified in the 'oh the horror of it all' feeling but if we are feeling that way we must try not to let it overwhelm us to such an extent that we forget that whilst we are horrified by what our loved one is faced with, whilst we are horrified by what a horrendous impact their illness is having on our lives, we must still try (and it is always ok to try and still fail) to get beyond the horror and see the person who has dementia as a person who still should be entitled to a respect of their life as it is.

The important thing is to not use the horror of it all as an excuse to find ways to make just our lives easier, by writing the person off and excusing that with pretenses that you are/were acting in kindness to the person. Worse yet is to write the person off and then ask for applause for your kind deed. If the person with dementia too is also unable to get past the horror of it all, it is completely understandable that that person and their loved ones will act in concert to end their sufferings and that will end the whole thing eventually and is simply a great sad thing that should be mourned, the loss of the person with dementia should be mourned and the person who has list them ahould be comforted, but this circumstance which I expect is more common should still not be allowed to become what is demanded of all dementia situations.

A person who doesn't see suffering as a sufficient reason to want death to end it, should not have to apologise anymore for their belief than a person who does see suffering as due cause. I think the latter folk however do need to understand that the former folk are not necessarily expressing their beliefs as accusations or scoldings but may do so just because they want people to know that there are alternative views. True horror is when a carer wants the suffering to end but the person with dementia accepts their lot and wants to live. The danger of the accepted view is that such people with dementia are not afforded their rights as a human being. The danger of the view of not accepting that suffering is not due cause to allow death is that a person who wants to die is not afforded that right.

That is my argument though, that both dangers must be acknowledged. To me there seems to be an imbalance. The right to die is given much airplay, people are supported greatly in their fight to have thus right available to them, the accesses to other human rights for dementia patients and the suppoets available to families who want to fight for these rights to be available to their lived ones however are often far less available far more infrequently offered.

The imbalance of the equal acknowledgement of both dangers has led to the life of a person with dementua being devalued, this leads to the costs to supporting the rights of a person who wants to live with their dementia as being seen as infeasible and the absence if these basic rights being excusable.

It is in the interests of many to keep the imbalance, it saves society money, it allows great suffering to be ended economically easily. An imbalanced focus on the rights to die, an imbalanced sympathy towards those who see suffering as a reason to support this right, can result in the actual devaluation of the lives of those who are still presently suffering. This devaluation in my opinion leads to a poor provision of other basic human rights to people with dementia.

 

[Sue J]

For what I can follow of the thread Nat I agree with you - in my present state I feel I've nothing left to give but if I say I don't want to live that's not me. I believe there is purpose in suffering it's just we may not know what that purpose is.