Thinking the Unthinkable

[DickG]

I had a lovely two hour lunch with a dear friend of mine today, a straight taking lady who calls a spade a spade. After much banter and interesting conversation the conversation turned to Mary and how she was regressing - I told her that Mary had another arrhythmic episode (her heart stops briefly) on Saturday and we discussed my attitude and how I dealt with the situation. Knowing Mary's condition she said that nobody would blame me if it took some while to find the phone!

This has made me examine thoughts and feelings I would rather not see the light of day. From postings I sense that I may not be alone with these ambivalent thoughts - we don't want them to die but on the other hand we don't want the suffering to continue. How do we cope with these thoughts? Do we ignore them? Do we suppress them? Or what? Has anyone found an answer?

Dick

 

[Margarita]

No do not ignore them or suppress those feeling just acknowledging them as normal living grief

I was where you are few Mouths ago



I felt very stress, up to the day a close member of my family died after seeing her come out of a coma from a stroke wanting her to live ,but no in that she was going to die , but when only nature new .

when she died I felt a relief , I am still Grieving it come & go's

 

[Norman]

Hi Dick g
there is no answer as there are no answers to most of AD problems.
You are not alone in your thoughts .
Your thoughts are shaped by the situation at the time
.Does that make sense?
I do know just what you mean.
We have the good days and the bad days,on the good days we feel that we can cope ,are coping and things are not too bad.
On the bad days we have other thoughts and we manage to ride them out,because we are torn between two lots of thoughts.
As a friend of mine,(still got one or two left) said to me regarding the Aricept tablets "are they prolonging the agony?"
All the best
Norman

 

[Amy]

Hiya Dick,

we don't want them to die but on the other hand we don't want the suffering to continue. How do we cope with these thoughts? Do we ignore them? Do we suppress them? Or what? Has anyone found an answer?

I don't think that they can be ignored or suppressed. I think that we have a duty to care for those we love as best we can, to minimise their pain and suffering and recognise that we are citizens of a democracy that has laws. I've been having a strange week this week, thinking things that I shouldn't be, but I'm going to post them anyway.

1) My mum's life is sitting in a chair, being walked to the loo, and at best she smiles and doesn't sit with her mouth hanging open. Fortunately she doesn't seem to be in pain or mental anguish. And I have to feel happy when she smiles, or drinks well from a cup. It stinks!
2) I have felt so jealous of other peoples posts that they still get an "I love you"; even when our loved ones are often shouting and abusive, there are stii times when they are interacting more normally. It is so difficult visiting someone who doesn't even find it easy to make eye contact; the other night I ended up massaging mum's feet, cos I thought it might feel nice to her, but I have no idea whether she even knew I was doing it. This sounds horrible but reading TP I have felt jealous and angry at other people, because they still have a relationship, someone who speaks and moves.
(Sorry, I said my thoughts have not been good.)
3) The other night I thought I could just forget her, she doesn't know anything, she doesn't need me. Walk away. Why am I visiting her?

I cannot walk away. I love my mum and promised her I would be there for her, and face with her what was to come, when she was first diagnosed. No we don't want them to die, but this is so hard some days.

Sorry this is not pleasant, but nor is what I feel at times, and I am sure that others will identify with some of it.

Amy

 

[Margarita]

Amy

Thank you for sharing

Amy, when you promised your mum your face with her what was to come; when she was first diagnosed, did you mum know what her ending stage of AD was going to be like?

Did you both openly talk to each other about this stage your at now?

 

[Amy]

Hiya Margarita,
No fortunately the dementia did not seem to allow her to think that way, thank God. She just had a problem with her memory!
Amy

 

[Margarita]

Oh I see now ..... you made a promise to your self.

So your jealous and angry is coming from your grief form seeing how your mother is now .

just wanted to undertand


how long has your mother had AD before getting to this stage ?

 

[Nutty Nan]

No Answer

Dick, I don't think there is one answer - each person, each situation, each carer is unique, and I pray that I will never have to make a conscious decision about life or death, whether for my husband, who is suffering from AD, or for anyone else.
Who are we to judge someone's quality of life? I am painfully aware that AD has changed my husband's expectations enormously, which is probably a blessing, since he seems completely oblivious to the many things that I miss. This is not to say that he doesn't get frustrated, angry and sad, but his world has narrowed, and his needs are changing all the time.
We may accept that we and our loved ones live surrounded by certain risk factors (possible falls, accidents, infections etc), but I doubt whether we could 'switch off' the instinctive caring and delay making that 'phone call to the paramedics if the need arose .......
We can't ignore the unthinkable thoughts when they haunt us, nor should we suppress them, but perhaps we shouldn't torment ourselves too much, as we are unlikely to be able to intervene in the course of events.

 

[Lila13]

I'm probably one of the people you are jealous of, Amy. Whenever my mother phones I think, at least she is still alive, can still use a phone, recognizes my voice, and I can understand about 3/4 of what she is saying to me.

A friend we've known for 40 years advised me to "walk away", 2 months ago. Just go, and don't go back. I could hardly believe anyone who knew us both could say such a thing.

I don't know what sort of promises to make in advance, not knowing what sort of state she'll be in, or I'll be in, and how soon.

I am still missing the mother who was emailing me every day up to the 21st October.

And here I am jealous of those whose loved ones are doing jigsaws or watching TV or enjoying going to day centres (or at least consenting to go without protest).

 

[Amy]

Hiya all,
Just wanted to share something from a PM that I had,

in the future when we are old ladies and people will think we're halucinating but in actual fact we'll be talking to the spirits of our parents and they will be saying how much they appreciated us not giving in!

What a fantastic thought. It is so difficult sitting or being with someone you love who doesn't even seem to see you at times, but maybe one day there will be a way of our spirits touching again.
I don't know if I should post; I know on another thread Nutty Nan said that she tries not to think about what may yet be to come. I don't want to offend or upset anyone. Margarita asked how long it has been, I became very concerned about mum's short term memory 15 years ago; it's been at least 8 years since she has been able to hold a proper conversation - my husband hasn't known her to be able to talk with and we have been together 8 years. For 8 years she was a walker, none stop, then last year she stopped, and now has great difficulty walking even when supported. If she has been sitting for any length of time (which is inevitable) her body sort of gets stuck in that position. Mum was diagnosed with muti infarcta dementia but it is also thought that there is an element of AD. Why I feel I should post? My only way to defeat this disease is not to let it destroy me and my love for my mum; for me to know that when she dies that I was with her every step, that I kept my promise. I know that means to accept it, to continue to find good bits; things to rejoice in. I cannot pretend though that I don't have these other feelings. Love can conquer the pain, loss, and despair that dementia can bring. There are so many people who post on here that prove that.
Waffled enough. I'm off.
Amy

 

[Lynne]

Amy

This sounds horrible but reading TP I have felt jealous and angry at other people, because they still have a relationship, someone who speaks and moves.

I think it likely that we are all envious in some way, it's just a matter of degree, depending on how far down the road Mum (in my case) has gone. I envy people with Mums who still go out to whist drives or on coach trips, do crosswords, who still read 2 or 3 heavyweight library books a week, who can remember simple conversations for longer than half an hour, who still know what day the milkman needs to be paid, or when the dustman collects. I wish she could remember the names of nephews, neices & grandchildren, and their birthdays. Once she could - sadly, no longer.

Amy, it's a form of grieving for what's been lost, and no-one's immune to it. Let it out, bottling it will only allow it to fester. I'm sure no-one here will throw stones at you.

 

[Norman]

Lynne & Amy
I am sure that we are not unique with the feelings that we have been describing.
Lynne your post would describe my feelings perfectly if I just subsituted "Wife for "Mum.
I have said it all before and now following the battles with SS , winning has not really made me any happier.
I have more free time now, but I feel lonely and sad to go out alone,I want Peg with me, not left with strangers.
I want too enjoy life together as we did before.
Get a new life they say,I don't want a new life,I want the old one back,the one where the love has survived for so many years.
Our two sons feel the same,they resent families with well Mums,they ask "Why my Mum?"
I know none of this wishing can ever be,so I will keep my promise to Peg and I will love and care for her until I am unable so to do.
Norman

 

[Margarita]

Amy

Beside your mum not being able to hold a conversation, I bet your enjoy some funny moment of conversation with her I am saying this, because throw you sharing your story I realize that I only have one mum so I better enjoy my time with her .

I am finding the conversation with mum wired ,but nice & they make me smile .like when she keeps asking my daughter who at collage to bring a Spanish book from the library ,but Marisa keeps forgetting So mum says put your hands together & lets say a pray so Marisa my daughter, does not forget & she really starts praying lol .

I look at mum & think I wish I had the faith she has, does she knows some think I do no, like a link how to talk to God, ok not going mad just stress.

I had to make that decision, to end my mum sister life, my up bring was wired as my mum sister brought me up in a long part of my childhood in Gibraltar so Lorena was like a 2nd mum to me I was the only next of kin beside my mum, so the decision was mine alone

What help me was no in how strong her faith was, even if mine was running low & pulling on all the happy good memories I had with her in the past while I waited for Lorena to die.

I am not comparing my situation with Lorena with yours just sharing my story & how I cope in seeing her that way .

PS


Excuses my ignorant, but I have never heard the expression what Dave said.



Knowing Mary's condition she said that nobody would blame me if it took some while to find the phone!

What does it mean ?

 

[noelphobic]

I don't think it was an expression as such. I think what was implied was that if she was ill and needed emergency help then if that was delayed slightly then she would die. That sounds awful but I don't know how else to phrase it!

 

[Lila13]

Glad your mother is still reading, Margarita.

Is it a particular Spanish book she wants or will any Spanish book do?

My mother looks sadly at her bookshelves and says "I used to read books".

At least we can still share poetry, how lucky that we (her generation and mine) were encouraged to learn so much off by heart as children and adolescents.

Lila

 

[connie]

Hi all, what is it we all want from this journey.......the best for our loved ones.
I am sure, whatever the situation, that is exactly what we will do.

I have to endorse Norman's comment:

I don't want a new life,I want the old one back,the one where the love has survived for so many years.

Take care everyone, Connie

 

[Margarita]

OIC Noel


Dave the thought was implanted by your dear friend it would not be her that would have to live with that guilt, because guilt will follow as you still have love & compassion for your wife Mary ,don’t think I could live with myself

I still keep with what I said I would acknowledge those feeling as stress & seek professional advice relishing that I can not play god as we have laws, & put my mother in a home






lila Any Spanish book would do romance, that the main issue mum , mumwill read a few lines or not even that & put the book down, just like the knitting, but she has forgotten that will happen, but I love her so much that I just play along & hope that Marisa will get the book, but shall not tell Marisa that will happen

And I shall end up reading the book to her while she Naps lol , but it keep mum happy

She a strong willed woman & hate people knowing that she is losing control of her mind ,so I keep the secret for her

 

[Margarita]

Connie Norman’s comment:

I don't want a new life, I want the old one back, the one where the love has survived for so many years.

Please don’t think I am being judgmental ,but that implies that the love has gone now , just trying to understand ,as looking after my mother the love does not go ,but if I was looking after my husband the situation would different if the love went ?

So you all do it from compassion or what ? for your partners

 

[DickG]

neolphobic

You hit the nail on the head, it does sound awful but the truth often is. Incidentally my friend lost her mother to AD two years ago.

I guess that at the end of the day it boils down to love that keep us going.

Thanks to all who have responded - a trouble shared etc.


Dick

 

[Norman]

Margarita
I am sorry but I do not understand your post at all.
My post did not imply that the love had gone far from it.
If you read the post again the last part says it all

Quote
I know none of this wishing can ever be,so I will keep my promise to Peg and I will love and care for her until I am unable so to do.Norman

Regards
Norman