am I evil to think like this?

[drmclarke]

Mum's been obviously (to me and my siblings - except the invisible one of course) grappling with dementia for several years, and was formally diagnosed a year ago. She's a very determined 'refuser', and has managed to get rid of nearly all the help we've arranged (down to 3 meals on wheels a week now - no other help). She lives alone at home in disgusting filthy chaos. I live 300 miles away, with my own difficulties, including a disabled child, and a distinct failure to win the Lottery, so can only, with the best will in the world, do the 12 hour round trip to clean, feed her, etc, monthly. She, of course, assumes I'm only there to steal her money and belongings, and tells everyone this loudly and unreservedly.
I read recently that life expectancy after diagnosis is on average about 5 years, and I am clinging to this fact like a drowning woman clings to a piece of wreckage.
I feel bad that I'm so focused on her dying, but tbh I would give up now if I thought I'd still be doing this in 5 years time.

 

[garnuft]

No, you're not evil.

I adore my Mam but I think those thoughts 50 times a day.

It is hard for you as you live so far away and must worry dreadfully about her (with the Devil in your ear wanting the phone to ring to say it's all over)

No, you're not evil. I think it about my disabled son 50 times a day too.

I adore them both.

You need a bit of peace and your Mum won't let you get it.

I sing from the same Hymn sheet, sometimes.

We are evil and wicked and must be destroyed.

Chin up, you're only Human. XXX

 

[Jaycee23]

When my mum started having symptoms of dementia she started to refuse all help and everything I did to make her life (in my eyes) easier and she would turn it away. In her mind she was fine of course and did not need anyone. She would say she had not seen anyone for months when you had been at her house all afternoon. She would phone me and say my husband had stolen her hearing aid batteries, tv remote, frozen meals £1 from iceland alcohol that was locked up in her cupboard, my deceased dads clothes and I had stolen her money. If she went out on her own and a neighbour would ask how she was she would immediately tell them we were after her money etc. You are only human and feelings are easily hurt even when you tell yourselves 24/7 that they cannot help it as they have dementia. My mums life was misery and I could see it in her eyes. You feel you absolutely ease this misery they feel and it is soul destroying. I have also looked at my mum and thought she would be better of out of it as we could not seem to help. She did not want to be home and wanted to be at my house. When we brought her here she wanted to be at her house or she wanted to go back up north! I took her up north! to see her sister and that evening she demanded I take her home! I have also felt she would be better of out of it as I see deep fear and unhappiness in her eyes that cannot be cured. She is now going in a nursing home and I wonder how she is going to be. We I think have to harden up and do what we can but realise we cannot do everything.

 

[at wits end]

I have always been haunted by prognosis's. My gran has no quality of life and wants to die. She says she will throw herself in a pond if she sees one. I said let's go skinny dipping, she said 'no I might drown' (?!)

I think it's natural to want the suffering to be over. I reckon gran has five years tops. that said, this time last year i doubted she would see last Xmas. Now she seems fitter than ever!

'One day at a time..... sweet jesus...........'

 

[rajahh]

I often feel this way about my husband. He doesn't know me, he doesn't know our home, .

He seems reasonably contented but keeps asking how much longer he has to stay here?? He asks continuously when I am leaving, so that " she" can come back.

The only time he is going to be at peace is when he has died, and that will be the only time I have peace too.

Do I " enjoy" feeling like this. ??/ No I do not, but it is the truth.

Jeannette

 

[end of my rope]

no you are not evil

Hi - just to add my voice to the other respondents. No you are not evil, you are doing your best and a huge amount more than is probably good for you. You deserve to let off steam whenever and to be let off the carer's treadmill as often as possible.

We all face moments when we wonder how much longer this will continue and search for some sense of an ending to the current turmoil, it's only natural.

Forgive me if this is not quite appropriate but it made me laugh at the time. I was in the shower and a tune came into my head and with it some (but not all) of the lyrics, it was Anarchy in the UK (showing my age here) and it was the line "I don't know what I want but I know how to get it"... lo and behold the phone rings and it's mum with another bizarre request...

With biggest, best love

eomr

 

[Anongirl]

Hi DrmClarke. Let me tell you something. Something which I never ever thought I could ever think.

The other day when I rang my mum one morning she didn't answer. Do you know what my first thought was? Part of me hoped she'd slipped away. How awful is that? She isn't even at a late stage of the disease but I'm terrified of watching her get there, terrified. I'm scared for both of us and I don't want it to happen. She's quite healthy (as far as I know) so I can see this going on for years.

If you are evil they are going to have to make a lot of room in hell for us all! Xxx

 

[CollegeGirl]

Along with the duet that Anongirl and I are going to form (called The Worry Worts) I am going to propose we form another band called The Evil Ones.

I suspect it will be a big group and we will have magnificent harmonies.

Joking apart, please don't worry about this for another second. It's completely normal. The only difference is that yu have had the courage to say out loud what many of us whisper to ourselves when we're at our lowest ebb and don't think we can face it any more.

It's called being human xx

 

[Anongirl]

Or The Evil Worts!

 

[Witzend]

Well, if you're evil, then so am I - I've often had the same thoughts. In earlier years it was partly because I was so stressed with it all, including the nastiness that was so upsetting - and partly because I wished my mother could just drift away in her sleep before we had to put her through all the trauma of moving her to a care home.

Nowadays it's because she's such a poor, pitiful old thing and I often wonder why on earth she's hanging on and on and on at nearly 95 when her quality of life is so poor and every shred of dignity has been ripped away.

I think there are probably many of us who think like this. It's good to be able to admit it on here, and know that we're not alone.

 

[sistermillicent]

well drmclarke, I don't think you are evil at all, but I am afraid you will need to make some contingency plans because it can take a lot longer than 5 years from diagnosis to the end. My mum is in great physical health and has had her diagnosis for a good 5 years, for the last three she has been completely lost to us mentally. For about three years prior to that she was just pretty difficult to be around.

I have every expectation that she will still be here in another 5 years but that caring for her will have killed dad who is visibly deteriorating. don't let that happen to you, get a plan.

 

[Witzend]

well drmclarke, I don't think you are evil at all, but I am afraid you will need to make some contingency plans because it can take a lot longer than 5 years from diagnosis to the end. My mum is in great physical health and has had her diagnosis for a good 5 years, for the last three she has been completely lost to us mentally. For about three years prior to that she was just pretty difficult to be around.

I have every expectation that she will still be here in another 5 years but that caring for her will have killed dad who is visibly deteriorating. don't let that happen to you, get a plan.

I can't remember now when it started, but I guess my mother was about 82. Having been through it all once with my FIL I think I was in denial for quite a while (just couldn't face it again) - though my sister kept insisting she was showing signs. Any sort of official diagnosis came quite a bit later.

When she went into the CH at 89 I honestly thought she wouldn't last more than two or three years.
She'll be 95 in June.

 

[Kathphlox]

Dad lasted about 5 years, it's very very variable.. so it seems

 

[Margaret W]

Of course you aren't evil. None of us are. In fact the opposite. we are Stars. I suggest the group name Evil Stars. Last Rivers (anagram).

Love to all

Nargaret

 

[zeeeb]

I think 5 years could be a long shot. My grandmother inlaw is 96, has had alzheimers diagnosis for over 25 years!!!

Obviously, if they refuse help, their lifespan is shorter.

But once my grandmother inlaw went into a nursing home, her health picked up dramatically, with regular medication, good food, and personal hygiene. She's the fittest 96 year old I know (she's the only one I know, actually)...

Some people live a very long time, and I believe once they let go of everthing, they no longer have to worry about all those little details that we have stressing us daily. They don't have to worry who's paying the bills, who's doing the cleaning or the cooking, what's going on with friends and relatives. They don't remember anyone dying, so they can tend to get to a point of ignorant bliss. Not a worry in the world!!!

 

[kingmidas1962]

This collection of 'evils' is going to be awfully big .... I remember seeing my mum rocking in her chair in the depths of carer breakdown, saying she'd lost everything and she wanted to die ... and all I could think was 'if you can't cope, and you don't want to go on, there's enough drugs in the house to kill an army....' and wondering what if ... it still plays on my mind!

 

[ElizaJane]

Hello everyone,
I am new to the forum, but reading your posts comforts me greatly.

My Dad is 94 with Alzheimers, and cannot be left alone. Mum is much younger but has Parkinson's. She always planned to look after Dad in his old age, but is now struggling to look after herself. Their house is cluttered and dirty, and a lot of their clothes need washing. Mum turns down all offers of outside help except that she has accepted a lunchtime visit from a professional carer to prepare a hot meal for them both, but otherwise will only accept help from family, which means me, basically! It breaks my heart to see them struggle, but I am so afraid of the future, and I cannot become their full time carer, for my husband's sake as well as my own. I am trying to make contingency plans. It is vital that they stay together, but I cannot see Mum ever going into a care home. She will fight it fiercely. I have no idea where we are going, and feel rather alone, which is why this forum is so helpful.

Chin up everyone. All we can do is our best, and we must remember to look after ourselves.

XX

 

[Delphie]

well drmclarke, I don't think you are evil at all, but I am afraid you will need to make some contingency plans because it can take a lot longer than 5 years from diagnosis to the end. My mum is in great physical health and has had her diagnosis for a good 5 years, for the last three she has been completely lost to us mentally. For about three years prior to that she was just pretty difficult to be around.

I have every expectation that she will still be here in another 5 years but that caring for her will have killed dad who is visibly deteriorating. don't let that happen to you, get a plan.

Let me second that. A contingency plan is a must, especially if the situation seems so difficult already.

My mum's consultant thinks the Alzheimer's started at least 6 or 7 years ago, but mum's still very healthy in every other way. She's fit and active, comes from a family that lives to a good age, and if her decline continues as it has done so far she has every chance of living for many years to come. One resident in mum's care home has been there well over 20 years, and was obviously ill for a period of time before that, and while clearly not well he doesn't look to be a death's door either.

You're not evil and your needs matter too, so take a deep breath and start making plans for a future that allows you to have a good life, regardless of long your mum's is.

 

[Hair Twiddler]

Can I join The Evil Worts too? I too have all the bad and evil wishes churning around in my head lots of the time. Mum lives with us - I sometimes get to 9:30 without seeing her (she drinks...alcohol not much tea) and wonder.........
I haven't posted or read posts for a while, sometimes this drudgery and reading about it all gets too much. But I liked this post.

 

[ElizaJane]

I marvel at those of you who have one or both parents living with you, and have huge admiration for you. I love my parents, but the thought of having them live with us is unthinkable!! In any case my husband would never allow it!! I worry that Mum may think it is a possibility... It is so hard to talk to her about the future...