TIPPING POINT

[Dutchman]

It’s true that people don’t understand dementia if they don’t have experience of it. I didn’t, until my wife developed it.

I’ve mentioned elsewhere how I keep my wife going to karaoke as I think the singing and social interaction are good therapy. I wish I had a £ for every person who says “she looks fine to me”, even the KJ has said that but then got a surprise on Saturday night when my wife got up to sing a song she has been singing for a couple of years. The KJ put up a different backing track for the song and my wife just stood and stared at it - it wasn’t the usual so she didn’t know what to do!

It was sad in a way but showed people that she ‘looks’ OK but the mind isn’t working as it should. It felt like a small victory to me as I hoped a few people would now understand why I constantly tell her what to do - it’s not that I’m a control freak!

So, here I am after my wife went to bed at 15.00 because nothings on the tv. She has now come down from upstairs and got anxious because I won’t come to bed at 18.00. I feel like a young child being told to go to bed. It’s dark she says so I’m being mean. If I go to bed now I just stay awake, or sleep and wake up in the middle of the night. You couldn’t make this up and telling others just gets you a knowing smile.....doesn’t help. What do I do? Compromise, give in, refuse, and all the time feeling guilty and not caring. Nothing reasonable.

 

[maryjoan]

So, here I am after my wife went to bed at 15.00 because nothings on the tv. She has now come down from upstairs and got anxious because I won’t come to bed at 18.00. I feel like a young child being told to go to bed. It’s dark she says so I’m being mean. If I go to bed now I just stay awake, or sleep and wake up in the middle of the night. You couldn’t make this up and telling others just gets you a knowing smile.....doesn’t help. What do I do? Compromise, give in, refuse, and all the time feeling guilty and not caring. Nothing reasonable.

There is nothing whatsoever reasonable about this disease, and we end up 'blaming' the person who has it - we wouldn't blame someone who broke their leg or something visible.

I think the problem is that we all know that this ' is for life' whether it is our life our theirs, but it is. And it is such a weird, unreasonable, bizarre thing to live with that defies the logic that we have used throughout our lives.

Reading your post, I wonder if she would want to stop up all night during the summer when it hardly goes dark.....not a good thought, and no help to you I know.

Why should you go to bed when she does? Happily tell her it is time for her to go to bed, and let her go, and then tell her that you are not tired, or you have to have your horlicks, or you are waiting for the late night news to come on, and then you will come to bed. Tell her you are not being mean - she might well have forgotten it by the time she gets back in bed anyway.

Don't feel guilty or uncaring, please, don't. You are trying to live your life in a world that is no longer anything you recognise, and you have to make some sort of life for yourself. If it means her going to bed, and you stopping up, say whatever you think you have to to make her go to bed, and you can have some peace and quiet - buy do not feel guilty at that.

 

[AliceA]

I felt I was doing well, workman finished on Thursday, I sorted a bank issue, security had to be updated and it took ages, I dealt with several other things, I cleaned, got meals on the table. Today again I felt I was doing well, final sorting out so the tree was ready to decorate.
A slow journey to give my husband the Christmas he needs now. I juggled online to order orders, with order limits and dates. I cannot get everything from one source.

We could not get to Carol service with the family, it is too far to walk in the dark and cold. My husband has a cough. They all had been to a local farmers market but no offer to bring something back. I have not had one offer of a shopping trip as they all have been dashing about.
Even so all that seem fine, yesterday I had a late lunch after my husband's meal was cooked every thing was running late. A daughter called in, offered to help, I asked her to help her Dad with decorating the tree, she said oh he can manage that. On leaving she pointed with a stare, it was not that cold out and sunny, she has a bee in her bonnet about us getting out and walking more.
Some how that cracked me, the straw that tipped me over.
I just felt overwhelmed by it all.
We are invited to meals for the two main days, I gave her help to cover all that family entertaining.
We love our little home, we had transport when we came to a growing village, i just felt so cut off, my coping skills seemed to crumble. I started last night to post but it all seem so miserable,
So another day

 

[Starbright]

Hi Alice so sorry your feeling this way ..everyone is so busy rushing about food shopping etc it’s crazy the shops will be open on Boxing Day for goodness sake. I can remember when everything closed down both days and if Christmas fell on a weekend the shops would be closed up for 4 days. Such as life today.

I know only too well the feeling when family and aqaintances tell us we need to get out more do stuff and get some fresh air , this is always my tipping point ,because basically I’m just too tired,

I do hope your having a better day here’s a hug thinking of you A x

 

[maryjoan]

I felt I was doing well, workman finished on Thursday, I sorted a bank issue, security had to be updated and it took ages, I dealt with several other things, I cleaned, got meals on the table. Today again I felt I was doing well, final sorting out so the tree was ready to decorate.
A slow journey to give my husband the Christmas he needs now. I juggled online to order orders, with order limits and dates. I cannot get everything from one source.

We could not get to Carol service with the family, it is too far to walk in the dark and cold. My husband has a cough. They all had been to a local farmers market but no offer to bring something back. I have not had one offer of a shopping trip as they all have been dashing about.
Even so all that seem fine, yesterday I had a late lunch after my husband's meal was cooked every thing was running late. A daughter called in, offered to help, I asked her to help her Dad with decorating the tree, she said oh he can manage that. On leaving she pointed with a stare, it was not that cold out and sunny, she has a bee in her bonnet about us getting out and walking more.
Some how that cracked me, the straw that tipped me over.
I just felt overwhelmed by it all.
We are invited to meals for the two main days, I gave her help to cover all that family entertaining.
We love our little home, we had transport when we came to a growing village, i just felt so cut off, my coping skills seemed to crumble. I started last night to post but it all seem so miserable,
So another day

We are all on the edge of a tipping point and I feel so for you that you are finding it overwhelming. We cannot physically help you but we can send our thoughts and good wishes.

I tried a ploy with my OH's family and it has had some success - Do you have a Carers Assessment? I contacted the lady that did mine, and asked her would she write an 'official' letter concerning her role in my life, and explaining the situation to his two children, and brother. I was given the chance of vetoing it first, and it was very professionally done, and sensitive as well.

Already, my OH's son has been in touch with 3 different rather long weekends in Jan and the offer to come down here and care for his father while I take a break. How wonderful - today, I booked a flight up to see my family (twas only £76 return), and emailed the son giving the details and now he feels its all in place and he has to come !!!!!

 

[AliceA]

Clever you! I am so pleased you have a trip planned it will be so good for you and your family too.
I feel washed out but better, I expressed (up to a point, but the salient feelings) how I was feeling. Our daughter was mortified she had not recognised the need. She is under pressure so I understand but it is not just her responsibility.
I feel we are fighting for support that is drying up rapidly.
I feel there are quite a few of us in similar positions, the shrinking services make li

Hi Alice so sorry your feeling this way ..everyone is so busy rushing about food shopping etc it’s crazy the shops will be open on Boxing Day for goodness sake. I can remember when everything closed down both days and if Christmas fell on a weekend the shops would be closed up for 4 days. Such as life today.

I know only too well the feeling when family and aqaintances tell us we need to get out more do stuff and get some fresh air , this is always my tipping point ,because basically I’m just too tired,

I do hope your having a better day here’s a hug thinking of you A x

Thank you, Starbright, yes I remember working on Christmas Eve, two days off and back at work. We only stayed up at New Year if it fell on the right day as the First was not a holiday. Shops closed and fresh food took a while to restock.
I suppose too we appreciated it more because food was in seasonal too.

It all puts pressure on unnecessarily.
It was the added pressure beng told to get out and about! We know more than anyone, don't we, that we would if we could.
Like you, I just get too tired, jobs that took minutes now take so much longer.
The interruptions too, even when quietly dealt with, take energy not available for other things.
Yes, it would be lovely to get out more, have more energy but life is how it is.
As I said to Mary, I feel better today. I have caught up with chores, shopping coming tomorrow so plan a quiet two days, Life Willing!

With love and a hug, Alice x

 

[maryjoan]

Day not off to a good start - I snapped at him for keeping me awake off and on all night.... he replied " Tough!" - not like him at all.

 

[Sad Staffs]

I felt I was doing well, workman finished on Thursday, I sorted a bank issue, security had to be updated and it took ages, I dealt with several other things, I cleaned, got meals on the table. Today again I felt I was doing well, final sorting out so the tree was ready to decorate.
A slow journey to give my husband the Christmas he needs now. I juggled online to order orders, with order limits and dates. I cannot get everything from one source.

We could not get to Carol service with the family, it is too far to walk in the dark and cold. My husband has a cough. They all had been to a local farmers market but no offer to bring something back. I have not had one offer of a shopping trip as they all have been dashing about.
Even so all that seem fine, yesterday I had a late lunch after my husband's meal was cooked every thing was running late. A daughter called in, offered to help, I asked her to help her Dad with decorating the tree, she said oh he can manage that. On leaving she pointed with a stare, it was not that cold out and sunny, she has a bee in her bonnet about us getting out and walking more.
Some how that cracked me, the straw that tipped me over.
I just felt overwhelmed by it all.
We are invited to meals for the two main days, I gave her help to cover all that family entertaining.
We love our little home, we had transport when we came to a growing village, i just felt so cut off, my coping skills seemed to crumble. I started last night to post but it all seem so miserable,
So another day

Hi Alice, I just read your post. I’m so sorry that things are building up. It takes that straw that breaks us doesn’t it?
It’s such a lonely existence, even when surrounded by people.
I doubt we will see anybody until.... well, who knows, probably New Year’s Eve when I see the GP!! But that is fine... we can cope.
I’m more concerned that I have responsibility for cooking Christmas dinner. Never done it before, something my husband always did.
Just hope we don’t get salmonella!!
I hope you manage to enjoy your two days with your family.
And, I hope your husbands cough goes away quickly.
Much love Alice, B xx

 

[AliceA]

Dear B, good luck with your dinner. Best thing I can recommend is that you set a time. Then work backwards, main, put in x.xx veg put in x.xx.
Or go on a fast!
Once I stuffed individual chicken breasts with stuffing, wrapped in bacon. Good if a whole bird is too much.
I prefer vegetarian, so I do something that be cut into hot or cold.
Just keep it simple, cheat if you can!
My mother always used to make her own Christmas pudding, one year she bought one but put in whole almonds and cherries plus a splash or so of spirit. Dad was the only one who knew this, at dinner he gave a homily to Mums homemade pudding, nothing like it he declared glaring at us as we stifled giggles! He said, having had a drink or more, I am quite serious, there is nothing like homemade. It was a wonder we did not choke to death!

I have rung a few friends of my age, the story is the same, people saying, get out more, walk more, exercise more! I know we can not be political on here but I am wondering whether to start a Walk Less Party!
Not that I do not like walking, we did have all the gear, just no time or energy!

Anyhow, remember it is just one day of many. Enjoy in your own way!

Love, Alice, xxx

 

[AliceA]

Day not off to a good start - I snapped at him for keeping me awake off and on all night.... he replied " Tough!" - not like him at all.

Hope it


Hope it gets better, we need our sleep, once in the early early the lights all went on, I said I am not awake yet, reply was Well I am! Hope he sleeps better tonight for you. Xxx

 

[karaokePete]

Day not off to a good start - I snapped at him for keeping me awake off and on all night.... he replied " Tough!" - not like him at all.

Lack of sleep can be tough - it's one of the things I have to endure as my wife can get very active at night.

Just to give you a bit of a laugh and hopefully cheer you up, here's a couple of my best tales from the nightly adventures(told on the basis that it's better to laugh than cry!).

The first was a night when I was awoken by my wife thrashing about in the bed. As I came awake I asked if she was OK and got the reply "it's a swimming day Pete, use it or lose it". As I came fully awake I saw that she was doing the front crawl, with full arm and leg strokes, in the bed. Funny thing is that when she used to go swimming she only ever did the breast stroke!

Another time was when I was awoken by her shaking me. As I opened my eyes I saw that she was standing at the side of the bed in nothing but a pair of knickers and with a pot of face cream in her hand. I asked if she was OK to be met with "shush, there's a burglar in the attic. I don't know whether she intended to hit him or fix his wrinkles!

Oh the joys of the pure weirdness of it all.

 

[Starbright]

Hi @karaokePete ...that did make me smile thank you...my husband usually says “Are we having a cup of tea or what” or “what time do we have to be at the airport” mostly at about 3am . However last night was the first time in weeks he didn’t wake and I had 6 hours sleep!!!! ...did I mention he turns the light on and waves his arms about a couple times a night. Your right the joys of weirdness ...HeyHo

Happy Christmas hugs A x

 

[AliceA]

Yes, we have to smile or cry, I can do both at the same time. Wishing you a peaceful time. Alice

 

[karaokePete]

Merry Christmas to both of you, and all other contributors/readers, as well.

I hope things go as well as they can for everyone.

 

[AliceA]

And you too! Preparing to watch Reindeer on slow TV.

 

[karaokePete]

And you too! Preparing to watch Reindeer on slow TV.

We'll be going out to karaoke shortly. The singing brings my wife back to a semblance of her old self so we both enjoy it.

 

[maryjoan]

We'll be going out to karaoke shortly. The singing brings my wife back to a semblance of her old self so we both enjoy it.

Lucky you for these few small moments - enjoy yourselves, and Happy Christmas, friend

 

[AliceA]

We'll be going out to karaoke shortly. The singing brings my wife back to a semblance of her old self so we both enjoy it.

It is good that music helps helps so much.

 

[karaokePete]

It is good that music helps helps so much.

The effect only lasts as long as the music but I enjoy it for what it is. I sing too so it's like old times for a while.

I sing in English, Greek and German and my wife used to sing in both English and Greek. My wife can no longer manage the Greek by herself but always wants to try her old songs so I duet with her. I have a deep voice so I sometimes have a quiet internal laugh to myself as I stretch to a female vocal in Greek with her. All the regulars in the bar know my wife has dementia so the support we get when we duet in Greek is simply wonderful.

The sad side is that I continue to learn new songs and my wife wants to do the same but can no longer manage that so it breaks my heart seeing her trying and failing. I let her duet with me on some of my old songs as she knows the beat because she has heard me sing them and that means they are new to her.

I'm pretty sure you will have seen it before, however, in case you haven't, this video is very interesting

 

[karaokePete]

Lucky you for these few small moments - enjoy yourselves, and Happy Christmas, friend

Thank you for your good wishes and for calling me friend.