Two years to get this bad. What now?

[margherita]

And to chuck another emotion into the pot, has anyone ever felt envious when reading about someone whose "journey" has come to an end? I don't want to offend anyone who has lost a loved one, for it must be a very sad and traumatic time. However, though I feel very guilty of even thinking like this, there are times when I just want the "bus to stop, so I can get off".

Yes. My answer is yes, I have felt envious of those who can get off the bus, as you say @Philbo .
I feel guilty, but that does happen to me.
I need my life back. I need to be free again.
When my mother died at the age of 83 (she had had dementia for 5 years) I did not grieve. She was only a shadow that vanished. I did not lose her when she passed away, I had lost her years before

 

[margherita]

Hi. Did I just say, "a quiet evening ahead ". Should've known better. After last night's disturb sleep I thought a nice early night would do me good, well at half past ten she decided to get up for breakfast , that's all I needed. Oh well, i finally convinced her that it's midnight not midday. She has gone to bed now so what am I posting for. Well a trouble shared and all that. So, i will say, goodnight , . Al.

Hi @AL60 ,
Hope you had a peaceful night and wish you a reasonably good day.

 

[Quenelise]

I think you should both stop beating yourself up about the guilt thing...when my late husband was ill I got so SICK of visiting the hospital and just thought I want this over, I never want to come here again. But of course, it all being over...meant him dying. And then a friend whose husband had cancer too, was widowed one year before me. And she said, it’s easier when they go. I felt so angry with her ...but she was right. You look back and think, how did I do that? But I did find, that the more ill he got, the more I appreciated little things. We couldn’t go out any more, but a day when he could manage a cup of coffee in the garden became a good day.
On the other hand, dementia is so much harder to deal with ...and I’m here in bed, exhausted because today I moved my husband into a supported living apartment, because I just couldn’t do the 24/7 care alone any more. So I’m beating myself up now, because I have caved in after only two years of this.
Sorry, over tired ramblings. I will go to sleep!

I know all of us are going to say this: DON'T beat yourself up. What you have done is the best you could have for you and your OH. In your mind you know it. It's just that your heart is probably still trying to reconcile what's happened. Nobody, not even us on similar journeys, have walked in your shoes. And we will probably all have to follow you. None of us want to. But sometimes there is no option.
Sending many hugs, Amethyst.

 

[AL60]

Hi. Why oh why do I say to myself, I'm going to have an early night, then stay up late? I certainly don't know so I don't really expect an answer. Is it perhaps subconsciously I want the quiet evenings to last forever. Or is it something to do with the fact I fell asleep mid evening , again , then find myself wide awake at midnight. I suspect the latter. Anyway , here I am once again , trying to make myself sleepy, it certainly beats counting sheep.
After a fairly stressful weekend today has been a bit more settled. Stared off a bit bumpy but settled again after the carer visit. It was one of those days when my wife was quite adamant that she didn't need a carer, a shower or medication. When the carer did arrive my wife was actually sitting in the car ,coat on and ready to go somewhere, anywhere, anywhere happy and carerfree. Five minutes later she was in the shower. I must admit, it's a good job we have the care visit, i wouldn't have a chance of getting her washed. Then there's the medication, not a chance , yet she's a different person for the carers. Strange isn't it, all the years together and it's almost as if she doesn't trust me yet she'll allow relative strangers to wash and dress her. I suppose it's just as well. Well, it feel like the sandman is calling, so lights out and roll on tomorrow morning, see what challenges await, will it be new ones or more of the same . Whatever they are we'll muddle through so goodnight. Al.
Seems like morning is just one long blink away Al.

 

[carolynp]

Hi. Why oh why do I say to myself, I'm going to have an early night, then stay up late? I certainly don't know so I don't really expect an answer. Is it perhaps subconsciously I want the quiet evenings to last forever. Or is it something to do with the fact I fell asleep mid evening , again , then find myself wide awake at midnight. I suspect the latter. Anyway , here I am once again , trying to make myself sleepy, it certainly beats counting sheep.
After a fairly stressful weekend today has been a bit more settled. Stared off a bit bumpy but settled again after the carer visit. It was one of those days when my wife was quite adamant that she didn't need a carer, a shower or medication. When the carer did arrive my wife was actually sitting in the car ,coat on and ready to go somewhere, anywhere, anywhere happy and carerfree. Five minutes later she was in the shower. I must admit, it's a good job we have the care visit, i wouldn't have a chance of getting her washed. Then there's the medication, not a chance , yet she's a different person for the carers. Strange isn't it, all the years together and it's almost as if she doesn't trust me yet she'll allow relative strangers to wash and dress her. I suppose it's just as well. Well, it feel like the sandman is calling, so lights out and roll on tomorrow morning, see what challenges await, will it be new ones or more of the same . Whatever they are we'll muddle through so goodnight. Al.
Seems like morning is just one long blink away Al.

Goodnight dear Al, I hope you are sound asleep by now. You are having such a hard time and I am so sorry. I know that feeling of wanting the quiet to last, hence not resting when one could, or - alternatively - having a couple of precious free hours, and then not utilising them at all well. Except maybe for the fact that, in both instances, one IS actually utilising them in exactly the most needed way.
Last night my OH was so chirpy, seemed absolutely normal. I was cast back into that niggling worry of "Is it all in my mind?' And this is a year after his FTD diagnosis! This morning we were back to Grumpy and Forgetful Mode. Lately I am missing intellectual stimulation so much. He doesn't bring anything to the party, somehow. No new ideas, no suggestions as to things we might see or do. But I mustn't complain; I must make an effort to enjoy this easy time, especially when I read what you're going through and know what is ahead.
As to why we receive the worst treatment from our PWD, it is surely one of the cruellest aspects of caring for someone with this awful condition? Are we somehow associated with the unsolvable problem, in their eyes, and blamed for it? But it is SO hard to see them muster every ounce of energy and cheeriness for someone - anyone! - else! Hope you get a good night. Carolyn.

 

[Philbo]

Well we (or more precisely, I) had a traumatic day yesterday. My wife's sister's husband was recently diagnosed with pancreatic cancer, which has spread to his liver and lungs. He was given 5 months and was in a lot of pain and discomfort. They had to get the nurse from our local hospice to come out to give painkillers on Saturday and Sunday and sadly, he passed away in the early hours on Monday morning - 2 weeks after the diagnosis!

Getting the call from one of their sons at 05:30, my natural reaction was to want to rush down there but of course, the reality is I had to get my wife up, washed, dressed etc etc. Plus my biggest concern was unlike a lost of folk on here whose PWD are uncooperative and/or argumentative, my wife is happy and laughing - just not always at the appropriate time!

So I text them to say I would be down after lunch, when our respite visitor comes but her sister, bless her, replied to bring her down when we were up and about. Well, greeting us at the door, the poor lass was obviously sobbing her heart out, which my wife couldn't understand why?

Her sister sobbed "she's my sister, I need a hug and she'll make me laugh". So we all ended up crying, except for my bemused wife.

I certainly needed a hug too.

 

[Amethyst59]

Oh, Philbo...what a horrible thing to happen. Your poor sister in law. And a strain for you too, looking after your wife through this, while you are grieving. I am so sorry for the family’s loss.

 

[carolynp]

Well we (or more precisely, I) had a traumatic day yesterday. My wife's sister's husband was recently diagnosed with pancreatic cancer, which has spread to his liver and lungs. He was given 5 months and was in a lot of pain and discomfort. They had to get the nurse from our local hospice to come out to give painkillers on Saturday and Sunday and sadly, he passed away in the early hours on Monday morning - 2 weeks after the diagnosis!

Getting the call from one of their sons at 05:30, my natural reaction was to want to rush down there but of course, the reality is I had to get my wife up, washed, dressed etc etc. Plus my biggest concern was unlike a lost of folk on here whose PWD are uncooperative and/or argumentative, my wife is happy and laughing - just not always at the appropriate time!

So I text them to say I would be down after lunch, when our respite visitor comes but her sister, bless her, replied to bring her down when we were up and about. Well, greeting us at the door, the poor lass was obviously sobbing her heart out, which my wife couldn't understand why?

Her sister sobbed "she's my sister, I need a hug and she'll make me laugh". So we all ended up crying, except for my bemused wife.

I certainly needed a hug too.

Dear Phil I am so sorry for you and your family. Not being able to share your feelings with your wife must have been agony. And having to carry on "as usual" with her ... terribly difficult. I loved her sister still wanting a hug from her, despite everything. I hope that gave you a warm feeling in the middle of such sorrow. So fast and unexpected a death, coming so soon upon the diagnosis, will be hard on everyone. I wish and your family all the very best over the next few days and weeks. Hugs from me too. Carolyn.

 

[Quenelise]

Philbo this must be so hard for you. Sending many hugs.

 

[dancer12]

Hi. Why oh why do I say to myself, I'm going to have an early night, then stay up late? I certainly don't know so I don't really expect an answer. Is it perhaps subconsciously I want the quiet evenings to last forever. Or is it something to do with the fact I fell asleep mid evening , again , then find myself wide awake at midnight. I suspect the latter. Anyway , here I am once again , trying to make myself sleepy, it certainly beats counting sheep.
After a fairly stressful weekend today has been a bit more settled. Stared off a bit bumpy but settled again after the carer visit. It was one of those days when my wife was quite adamant that she didn't need a carer, a shower or medication. When the carer did arrive my wife was actually sitting in the car ,coat on and ready to go somewhere, anywhere, anywhere happy and carerfree. Five minutes later she was in the shower. I must admit, it's a good job we have the care visit, i wouldn't have a chance of getting her washed. Then there's the medication, not a chance , yet she's a different person for the carers. Strange isn't it, all the years together and it's almost as if she doesn't trust me yet she'll allow relative strangers to wash and dress her. I suppose it's just as well. Well, it feel like the sandman is calling, so lights out and roll on tomorrow morning, see what challenges await, will it be new ones or more of the same . Whatever they are we'll muddle through so goodnight. Al.
Seems like morning is just one long blink away Al.

Hi:

I hear they are cloning horses in Argentina. Wonder if cloned horse meat tastes the same as the original. Food for thought.

 

[Philbo]

Many thanks for all your kind responses - it means a lot.

I telephoned my SIL this morning and she’s doing okay. More visitors expected so it’s keeping her busy.

My wife went to her activity morning as usual, so I had a couple of hours to myself.

Thanks once again - and I’ve no idea what horse meat tastes like - at least not knowingly

 

[margherita]

I certainly needed a hug too.

Who cares for the carer? Nobody, I'm afraid.
I am so sorry about the loss in your family, Philbo.

 

[Philbo]

Who cares for the carer? Nobody, I'm afraid.
I am so sorry about the loss in your family, Philbo.

Many thanks Margherita.

Phil

 

[AL60]

Hi. I've not posted for a day or three, maybe more but who's counting. I've meant to, more than once but each time I read Philbo's post I find myself a bit stuck for anything to say. I know it's a few days late but, Phil , I'm sorry to hear off your sad news. I find it difficult to follow posts like yours, somehow my problems seem insignificant when compared . So, I'll leave it at that for now. For me it's just another quiet (for now) Sunday. Al.

 

[Grahamstown]

@AL60 So true and I feel the same that my troubles are small compared to yours, @Philbo and many other people. I have just been looking back to see when I first posted and I am a bit shocked to see how much has changed in 2 months, from a poor memory and odd behaviour at times to a diagnosis of AD and being forced to change my behaviour in order to survive without constantly being angry. This is a very steep decline and two months later, we have reached a small plateau, I have been the one to adapt to all his little quirks, he has managed to continue with all his odd behaviours with a few of my interventions. The only thing I control is alcohol intake which I have managed to restrict this week for the first time to 14 units at great cost to myself in terms of persistence. So he leads a relatively normal life, looks after himself and can get about, shop, draw money because he remembers his PIN number and does exactly as he pleases himself, other than the above. I feel so angry and exasperated that this man has no insight nor can have ever again. I have just spoken to his cousin who definitely has some cognitive impairment and when I told OH, he said that this cousin drinks like a fish, the implication being that he should be able to do so too. I said that’s him not you but it’s useless to do so because he cannot reason, just feels aggrieved. I got quite angry with him. So I can’t look two years down the line. At the moment I can continue my life in the mornings but already I have had to curtail later in the day and not leave him. I just hope that this continues as long as possible. At times I just wonder if I should stop struggling and let him drink as much as he likes every night. I didn’t mean to write as much as this but once you get going it’s difficult to stop and is a relief.

 

[margherita]

For me it's just another quiet (for now) Sunday. Al.

A quiet Sunday for me, too.
OH has decided to clean his huge bookcase. Hopefully it will take long because he is obsessed by dust and stops to examine each book he takes out.
I have sought refuge in my room.
It has been pouring down since Friday evening. Our garden looks like a pond

You sound a bit low, Al, but hope I am wrong.

 

[carolynp]

@AL60 So true and I feel the same that my troubles are small compared to yours, @Philbo and many other people. I have just been looking back to see when I first posted and I am a bit shocked to see how much has changed in 2 months, from a poor memory and odd behaviour at times to a diagnosis of AD and being forced to change my behaviour in order to survive without constantly being angry. This is a very steep decline and two months later, we have reached a small plateau, I have been the one to adapt to all his little quirks, he has managed to continue with all his odd behaviours with a few of my interventions. The only thing I control is alcohol intake which I have managed to restrict this week for the first time to 14 units at great cost to myself in terms of persistence. So he leads a relatively normal life, looks after himself and can get about, shop, draw money because he remembers his PIN number and does exactly as he pleases himself, other than the above. I feel so angry and exasperated that this man has no insight nor can have ever again. I have just spoken to his cousin who definitely has some cognitive impairment and when I told OH, he said that this cousin drinks like a fish, the implication being that he should be able to do so too. I said that’s him not you but it’s useless to do so because he cannot reason, just feels aggrieved. I got quite angry with him. So I can’t look two years down the line. At the moment I can continue my life in the mornings but already I have had to curtail later in the day and not leave him. I just hope that this continues as long as possible. At times I just wonder if I should stop struggling and let him drink as much as he likes every night. I didn’t mean to write as much as this but once you get going it’s difficult to stop and is a relief.

Hi Sue I was wondering how you are. I want to think over your post tonight but just for now, re your efforts to control his drinking. What I am doing with OHs behaviours that I want to change in his best interests, is to try for a while. About 3-4 weeks in my case. Then if I haven’t got anywhere, I STOP and may the devil take the hindmost. Perhaps it’s madness on my part but I certainly would go mad if I kept battling with someone who, for whatever reason, refused to take any notice and went on being recalcitrant. For me it’s my husband’s refusal to see reason about needing to eat more. He’s lost a lot of weight. But if I try to encourage him to eat, it becomes a power struggle. So childish. I was born for better things than this nonsense! Goodnight I’m off to bed early. We go to Sydney on Thurs. Love C. xxx

 

[Philbo]

Hi Al and thanks for your response.

I feel that it is me who's the lucky one, as I don't have to deal with any anger issues (other than my own, of course).

Despite the snow (we've thankfully only had a light dusting here in East Kent) we managed to get down to the pub Friday and Saturday night and had a good time with friends. All good things come in threes so it's off down there again this afternoon (old adage being "make the most of it while you can" ).

Wishing you all well and roll on Summer.

Phil

 

[Grahamstown]

@carolynp I hope that your trip to Sydney goes well with no major issues. I really love Sydney but have only visited a couple of times, visiting relatives and when we went to several special gardens around the Bay Area. We used public transport and really got a good overview of the city.. We have a niece there but my brother moved from Sydney to Melbourne and now he is in Adelaide, which I also think a delightful city. I have a quiet week ahead after a busy week last week.

 

[margherita]

At times I just wonder if I should stop struggling and let him drink as much as he likes every night.

If I had dementia or any other incurable illness, I would like others to let me do what makes me happy, no matter how bad it is for my health.
What would happen if you let your husband drink as much as he likes?