TIPPING POINT

[AliceA]

Dear Starbright, I feel the same we are constantly stepping into a unknown area with uncertain footing.
Other people's experiences are helpful but every new experience is such a mix of personalities, abilities and resources of everyone involved.
This group of illnesses seems to drag up distant memories and reactions that we even when long married have not taken part in.
Staying in the present, dealing with things as they come up seems the only lifeline we have.

On TP the practical experiences are brilliant it helps us get through the everchanging legislation and practices beyond our control. The practical tips prepare us, but in the moment we are on our own with our own inner resources.
When I feel fragile I come on here and read what others are going through, there is a comfort in knowing at least on here we talk the same language.

Alice xxx

 

[AliceA]

Made me smile MaryJoan, do you have a plumbing kit for intestines too!

 

[Dutchman]

I am with you on this because I am the one who gets angry with the stupidity of it all, feel remorse and then repeat. My daughter came over today and what a relief to have someone else to interact with him. Just listening to the news and a bit depressed because in the piece on NHS funding, no mention of the rise of the incidence of dementia, and social care policy is in shreds. In the meantime we all suffer and battle on. Ditto going to bed early and in my case up and down about 5 times saying goodnight.

Today we went to the Supermarket and bought 2 rounds of sandwiches but there 3 already in our fridge. No amount of reasoning will deter her from buying in this way. My daughter phoned last night but has little idea (why would she) of the tiny bit by bit aggravations I experience each day. Why don’t you do this or that she says...if only some of these suggestions were that easy. What I’ve come to realise is that my wife has now no ability to understand and emphasise with my feelings, so when I say I’m upset about something, no compassion, only vacant looks. Expressing our feelings gets us nowhere This increases our loneliness in our relationships.

 

[Martarita]

Today we went to the Supermarket and bought 2 rounds of sandwiches but there 3 already in our fridge. No amount of reasoning will deter her from buying in this way. My daughter phoned last night but has little idea (why would she) of the tiny bit by bit aggravations I experience each day. Why don’t you do this or that she says...if only some of these suggestions were that easy. What I’ve come to realise is that my wife has now no ability to understand and emphasise with my feelings, so when I say I’m upset about something, no compassion, only vacant looks. Expressing our feelings gets us nowhere This increases our loneliness in our relationships.

Today we went to the Supermarket and bought 2 rounds of sandwiches but there 3 already in our fridge. No amount of reasoning will deter her from buying in this way. My daughter phoned last night but has little idea (why would she) of the tiny bit by bit aggravations I experience each day. Why don’t you do this or that she says...if only some of these suggestions were that easy. What I’ve come to realise is that my wife has now no ability to understand and emphasise with my feelings, so when I say I’m upset about something, no compassion, only vacant looks. Expressing our feelings gets us nowhere This increases our loneliness in our relationships.

Today we went to the Supermarket and bought 2 rounds of sandwiches but there 3 already in our fridge. No amount of reasoning will deter her from buying in this way. My daughter phoned last night but has little idea (why would she) of the tiny bit by bit aggravations I experience each day. Why don’t you do this or that she says...if only some of these suggestions were that easy. What I’ve come to realise is that my wife has now no ability to understand and emphasise with my feelings, so when I say I’m upset about something, no compassion, only vacant looks. Expressing our feelings gets us nowhere This increases our loneliness in our relationships.

Ho ,Duchman I really understand what you mean about your daughter,I have the same from my sons they think they understand but no I don't think they do , with the best will in the world they really don't know the extent of what we go through,and yes I understand how lonely it can be when your living with dementia.My thoughts are with you take care

 

[maryjoan]

It's like living alone but not alone and that is the loneliest place in the world.

 

[jenniferjean]

What I’ve come to realise is that my wife has now no ability to understand and emphasise with my feelings, so when I say I’m upset about something, no compassion, only vacant looks. Expressing our feelings gets us nowhere This increases our loneliness in our relationships.

That vacant look, that look that says "I haven't a clue what you are saying". Even if I have tears in my eyes my husband doesn't even notice.

 

[Grahamstown]

That vacant look, that look that says "I haven't a clue what you are saying". Even if I have tears in my eyes my husband doesn't even notice.

I have felt very tearful today and had a cry, no one to talk to who would understand and all because of an email to my husband (on my thread) and I have felt like that all day. He never noticed because I don’t think he looks at me now. I left him resting, went shopping and then for a long nature walk, hugged some trees and felt restored. When I got home he was still in bed so I made tea and then he came down for the evening restlessness.

 

[maryjoan]

I have felt very tearful today and had a cry, no one to talk to who would understand and all because of an email to my husband (on my thread) and I have felt like that all day. He never noticed because I don’t think he looks at me now. I left him resting, went shopping and then for a long nature walk, hugged some trees and felt restored. When I got home he was still in bed so I made tea and then he came down for the evening restlessness.

This is so very true for so many of us - but hugging trees is good. Anything that makes us feel better has to be good. You are doing the right thing, making contact with the outside world. Breathe the fresh air, get cold, get wind blown, actually feel alive.
I always take a turn around the garden last thing before I go to bed, just to make contact with the outside world. If I need to get up to use the loo in the night, I always stand and look at the night sky and look for stars. I think it is something in us, that makes us want to know that somewhere everything is still as it should be, even if our own homes are distraught.


My OH dozes all day in front of the TV unless I can talk him into a game of scrabble which takes forever. Otherwise he ignores me.
Does anyone ever ask themselves if they are really here? I do, I wonder if I am here at all........ is that weird??

 

[karaokePete]

Who said that?

 

[karaokePete]

I know what you mean Maryjoan. We can disappear into our OH's dementia world all too easily.

Sometimes my mind goes so numb that when I'm asked about what is wrong I can only say "everything".

I like to look out to sea at night as the sea and stars help me to keep in contact with the world.

 

[Grahamstown]

Life enhancing flowers which also cheered me up. Sadly he would have been with me earlier this year.

 

[Rosebush]

They've cheered me up aswell, thank you.

 

[gladiola]

We had a surprise visit on Sunday from a much loved cousin. When still a schoolboy he used to visit us and later baby sat for me. My daughters loved him too. Although he has a mother and FIL with signs of dementia he clearly had little understanding of the illness. When I asked John who our visitor was he said “Of course I know him. He’s the man who put the fence up”!

John is clean and smart and pleasant but believe me there is nothing there behind this. My cousin started most sentences with “Couldn’t you just.,,...”

Presumably people imagine that this or that cliched piece of advice will change the PWD into a functioning adult. If only. Fortunately my cousin is a good person and means well. I forgive him anything.

 

[Starbright]

I too was very tearful this morning after a particularly weird night with him and I barely slept mainly because he may fall. After bringing his breakfast to him in bed I fell asleep exhausted then felt guilty about sleeping till 10 am. I feel I’m in some sort of weird dream ((or nightmare)) and soon I will wake up and it’ll all be gone and himself will be here ,as himself and not this person I just cannot fathom.
Hope we all have a better day tomorrow A x

 

[kindred]

I too was very tearful this morning after a particularly weird night with him and I barely slept mainly because he may fall. After bringing his breakfast to him in bed I fell asleep exhausted then felt guilty about sleeping till 10 am. I feel I’m in some sort of weird dream ((or nightmare)) and soon I will wake up and it’ll all be gone and himself will be here ,as himself and not this person I just cannot fathom.
Hope we all have a better day tomorrow A x

I know. I still cannot believe that however hard I try, however good I am, oh you know, nothing will improve the outcome. Thank God for you all on here. Kindred.xxxx

 

[Starbright]

I know. I still cannot believe that however hard I try, however good I am, oh you know, nothing will improve the outcome. Thank God for you all on here. Kindred.xxxx

Morning @kindred ...That’s true we just soldier on don’t we...(((here’s a hug))) A x

 

[maryjoan]

I know what you mean Maryjoan. We can disappear into our OH's dementia world all too easily.

Sometimes my mind goes so numb that when I'm asked about what is wrong I can only say "everything".

I like to look out to sea at night as the sea and stars help me to keep in contact with the world.

You can see the sea? How lucky you are. I used to live right by the sea, now I am 20 miles inland, and cannot get to the sea, and there is nothing better than a stormy sea to watch !

 

[jenniferjean]

I always stand and look at the night sky and look for stars.

Sometimes, after a particularly bad day, I might look up at the sky. Then I'll shout out "you might knock me down but you won't keep me down. Bring it on!!!!"

 

[karaokePete]

You can see the sea? How lucky you are. I used to live right by the sea, now I am 20 miles inland, and cannot get to the sea, and there is nothing better than a stormy sea to watch !

Apart from 4 years when I lived in Belfast, I have always lived beside the sea and my home apartment has fantastic sea views.

We always head to the seafront when there's a storm as it's quite spectacular.

When I was young I probably had the best known rear end in the village as, at low tide, I was forever on all fours with my head stuck in a rockpool checking out the all the little critters that lived there. Happy days.

 

[marionq]

Sometimes, after a particularly bad day, I might look up at the sky. Then I'll shout out "you might knock me down but you won't keep me down. Bring it on!!!!"

@jenniferjean are you sure you’re not from Glasgow? That is what we call attitude here and most Glaswegians have it in spades.