Two years to get this bad. What now?

[AL60]

Hi. Yesterday when I'd finished that last post, i added a p.s., i promised a happier post. I knew this morning would be better, well I hoped it would anyway . My daughter was up and about so l actually texted her to ask if it was safe to come downstairs, how's that for cowardice the reply wasn't too promising. I heard my daughter leaving for college, i couldn't stay in bed all day. But another ten minutes couldn't hurt. I had to go downstairs at some point, even though I was still reeling from the previous night, i needn't have worried, just as I said in the previous post, right as rain. Waking up this morning I had the feeling I'd woken up from a nightmare, but it was real. But, today it was as if nothing has happened , i felt as if I had to tread carefully just in case something I said or did would start things off again. So, today has been a good day after all, but its no way to live , not knowing from one minute to the next if she's going to kick off over something. So we carry on as if nothing has happened. The weather today has been reasonably good, almost springlike, let's not get too carried away, i did say, almost. The longer days are coming fast, if that thought can't lighten the mood what can.
I'm done for tonight , I've run out of words, so, goodnight. Al.

 

[AL60]

No promises needed. We are just hear to listen, to the good times, the not so good times, the sad times, the confusing times , but most often the frustrating times while watching beers or glasses of wine (many glasses) disappear. I think I'll just stowaway on a rocket ship and go to a land far, far away. That won't be good though, they say "better the devil you know than the devil you don't. At least I love this devil.

Hope today is quieter. You're not cruel, you just had the stuffing knocked out of you. It takes awhile to put it back.

Hi, i just hope when the stuffing goes back I'll still be the same shape. Anyone know a good taxidermist . Al.

 

[dancer12]

Hi, i just hope when the stuffing goes back I'll still be the same shape. Anyone know a good taxidermist . Al.

And now for the lighter side, when my son was younger he slept with this stuffed bunny rabbit, well the material was getting worn out, being a loving mother I'd patch it up and re-stuff it. Good as new. Well one day I saw it was dirty so I proceeded to wash it in the laundry machine, it came out in bits & pieces (stuffing here, stuffing there, everywhere stuffing) but somehow I managed to re-stuff & re-patch it. Not like new but it'll do. Life in bunny land was good again. Lesson learned - don't wash a stuffed toy bunny in the laundry machine.

 

[margherita]

Hi Margherita, I guess the only way out is through....whatever the next phase of this disease holds for us.

I'm afraid you are right. No shortcuts in this desease.

 

[Philbo]

So do I.
I am angry and resentful.
Some of you can at least say their OHs were lovely before dementia.
Which is not my case, I am afraid

Hi Margherita

It's very difficult isn't it, to cope with these emotions? I adore my wife, always have done but I have always been the one doing all the supporting (she's had quite a life of dealing with post-natal depression, anxiety, as well as severe back problems).

So it's somewhat ironic, that although this disease has taken her (for now, at least) to a much happier place, it has left me in this world of turmoil? She is generally such a happy little soul (unlike poor Al60's dear wife) but like Al and most (if not all) carers on here, I despair at my own fate. Who's there for me?

I am finding it to be a difficult journey, made worse (my opinion) by not knowing how long the journey will take.

Just as Al tries to end on a happier note, last weekend in the pub, our group of friends got a splendid cheeseboard to share. Tucking in with glee to her crackers, cheese etc (helped by myself and the others), she suddenly picked up a large "slab" of cheddar and starting munching on it. Luckily, everyone found it highly funny.

Phil

 

[margherita]

she suddenly picked up a large "slab" of cheddar and starting munching on it. Luckily, everyone found it highly funny.

..When a person is lovely , people around them are ready to understand their difficulties.
My husband is more like Al's wife. A bit less aggressive, but more whiny.

 

[Nanawendy6]

Al60 like so many on this forum I recognise those feelings. I ask for support for my husband and get advice that really tells me to do more. Go out more. Give him this food. 5/6 small meals a day. Buy these clothes. Encourage him to shower or he will get UTIs or sore. (How?). Take him to these groups. Watch this programme etc etc. Writing it doesn’t sound much but I feel I’m being asked to devote my entire day (including and usually my nights). We eat the meals/food he wants otherwise I’d have to do it twice and I hate cooking! And so much gets thrown away afterwards. I really do not like being told I’m doing a great job because I know I am not. There is so much more I can do but I’m not. That’s my resentment. And while I’m at it how do you respond to the people who say they couldn’t do it? Are they saying they would just leave the person that they love? Some do and I don’t blame them one bit. Anyway to paraphrase another forum poster I am not a mother Theresa.
Keep posting I always find them honest and refreshing.

 

[carolynp]

Al60 like so many on this forum I recognise those feelings. I ask for support for my husband and get advice that really tells me to do more. Go out more. Give him this food. 5/6 small meals a day. Buy these clothes. Encourage him to shower or he will get UTIs or sore. (How?). Take him to these groups. Watch this programme etc etc. Writing it doesn’t sound much but I feel I’m being asked to devote my entire day (including and usually my nights). We eat the meals/food he wants otherwise I’d have to do it twice and I hate cooking! And so much gets thrown away afterwards. I really do not like being told I’m doing a great job because I know I am not. There is so much more I can do but I’m not. That’s my resentment. And while I’m at it how do you respond to the people who say they couldn’t do it? Are they saying they would just leave the person that they love? Some do and I don’t blame them one bit. Anyway to paraphrase another forum poster I am not a mother Theresa.
Keep posting I always find them honest and refreshing.

Dear @Nanawendy6 I’m so grateful you say all this. It is exactly what is driving me absolutely crazy. People keep “helping” by suggesting MORE things I could be doing for my husband when already his needs are occupying my every waking thought! It’s the strangest thing, this piling up of unwanted suggestions. Even my therapist, whose latest idea was that I could take my husband dancing, is doing it. If you knew him you’d know how ludicrous this is, he’s not danced a step in his life, even when we were young and courting. I appreciate she and other friends may be at their wits end but just LISTENING is all I want or need. Goodness knows I do enough of it for them. And I’m doing more than enough for my husband! Sorry for rant and sorry too, @AL60, this is your thread not mine and I still haven’t answered you about the hot weather! Which isn’t that much fun, truly! Bye from Carolyn, I’m going to have a nice cup of tea and hopefully calm down. xxx

 

[carolynp]

Hi. Yesterday when I'd finished that last post, i added a p.s., i promised a happier post. I knew this morning would be better, well I hoped it would anyway . My daughter was up and about so l actually texted her to ask if it was safe to come downstairs, how's that for cowardice the reply wasn't too promising. I heard my daughter leaving for college, i couldn't stay in bed all day. But another ten minutes couldn't hurt. I had to go downstairs at some point, even though I was still reeling from the previous night, i needn't have worried, just as I said in the previous post, right as rain. Waking up this morning I had the feeling I'd woken up from a nightmare, but it was real. But, today it was as if nothing has happened , i felt as if I had to tread carefully just in case something I said or did would start things off again. So, today has been a good day after all, but its no way to live , not knowing from one minute to the next if she's going to kick off over something. So we carry on as if nothing has happened. The weather today has been reasonably good, almost springlike, let's not get too carried away, i did say, almost. The longer days are coming fast, if that thought can't lighten the mood what can.
I'm done for tonight , I've run out of words, so, goodnight. Al.

Dear @AL60, you must be so exhausted. Even the “everything’s ok again this morning” days are almost as debilitating as the horrendous times. When my husband was diagnosed, in my ignorance I waited expectantly for the right time to discuss our new situation and learn his wishes for a future when he mightn’t be able to declare them. How naive I was! Instead he treated me to two psychotic breaks in succession, his mind being unable to tolerate the idea of what was happening to his brain, and an escape from reality being the only way out. Two escapes, that is.

In each case, the next morning he too was right as rain, with NO memory at all of what had happened. But what use was this to me? I was left hanging: no chance to discuss, let alone be apologised to, or, heaven forfend, THANKED for getting him through it in one piece.

So I can only imagine you too are on tenterhooks, dreading next time, and feeling both scarred and scoured out emotionally by the lack of acknowledgement from the very person who is causing all this terrible trouble and needing such constant and - yes - devoted care. It’s ghastly. What can I say? I’m thinking of you. Carolyn.

 

[carolynp]

Hi Margherita

It's very difficult isn't it, to cope with these emotions? I adore my wife, always have done but I have always been the one doing all the supporting (she's had quite a life of dealing with post-natal depression, anxiety, as well as severe back problems).

So it's somewhat ironic, that although this disease has taken her (for now, at least) to a much happier place, it has left me in this world of turmoil? She is generally such a happy little soul (unlike poor Al60's dear wife) but like Al and most (if not all) carers on here, I despair at my own fate. Who's there for me?

I am finding it to be a difficult journey, made worse (my opinion) by not knowing how long the journey will take.

Just as Al tries to end on a happier note, last weekend in the pub, our group of friends got a splendid cheeseboard to share. Tucking in with glee to her crackers, cheese etc (helped by myself and the others), she suddenly picked up a large "slab" of cheddar and starting munching on it. Luckily, everyone found it highly funny.

Phil

Dear Phil,
I feel for you and for everyone - the worry about the present, about the future, and - but this should take priority! - the worry about ourselves, and about who could possibly give us the care we are lavishing on our partner. I, too, feel I held things together throughout our marriage. My husband has been wonderful, and that has been my great good fortune - but I was the organiser, and the one he leaned on, always. I helped a lot with his career, too. And I was the one who looked after our intellectually disabled son by far the most, until eventually he unexpectedly died at 23.
So there's been a lot of caring in my past - and now, guess what?! - here we go again. My seventies are likely (if I am lucky enough to live - many friends did not make it to 69, as I have done, so I am well aware of my good fortune) to be devoted primarily to caring for my husband with FTD - as long as he lives. This parallels the past, as my life from 30 years of age, throughout that decade, the next, and almost half of the next, was completely dominated by doing the best for our boy that I possibly could. There are times when reflecting on all this makes it seem a bit much. A friend bracingly told me to forget about the past - and I do try to do that - but I'm not always entirely successful. It is hard, too, when, with one's partner, the (huge and increasing) effort being put in is not really recognised at all. And THEN there's the fact that one's OH is so much more on the ball, alert and easy-going, with friends etc than when at home, so no one can fully understand what is the matter - except on this forum, for which I give humble thanks.
All the best, and warm regards. May you have a good day and weekend, if possible. Watch those cheese boards! Carolyn.

 

[margherita]

The longer days are coming fast, if that thought can't lighten the mood what can.

I loved longer days when things were more or less ok.
I am not sure I love them currently.
Longer days means I have to stay more time with OH, my nights (the only me time) will be shorter..
It is so sad, but I long for my day to be over and look forward to darkness and bedtime setting me free, till next morning.

 

[AL60]

And now for the lighter side, when my son was younger he slept with this stuffed bunny rabbit, well the material was getting worn out, being a loving mother I'd patch it up and re-stuff it. Good as new. Well one day I saw it was dirty so I proceeded to wash it in the laundry machine, it came out in bits & pieces (stuffing here, stuffing there, everywhere stuffing) but somehow I managed to re-stuff & re-patch it. Not like new but it'll do. Life in bunny land was good again. Lesson learned - don't wash a stuffed toy bunny in the laundry machine.

Hi, just a rinse and spin does it for me, feel a little dizzy for a while afterwards but never mind, Al.

Dear @AL60, you must be so exhausted. Even the “everything’s ok again this morning” days are almost as debilitating as the horrendous times. When my husband was diagnosed, in my ignorance I waited expectantly for the right time to discuss our new situation and learn his wishes for a future when he mightn’t be able to declare them. How naive I was! Instead he treated me to two psychotic breaks in succession, his mind being unable to tolerate the idea of what was happening to his brain, and an escape from reality being the only way out. Two escapes, that is.

In each case, the next morning he too was right as rain, with NO memory at all of what had happened. But what use was this to me? I was left hanging: no chance to discuss, let alone be apologised to, or, heaven forfend, THANKED for getting him through it in one piece.

So I can only imagine you too are on tenterhooks, dreading next time, and feeling both scarred and scoured out emotionally by the lack of acknowledgement from the very person who is causing all this terrible trouble and needing such constant and - yes - devoted care. It’s ghastly. What can I say? I’m thinking of you. Carolyn.

Hi, Having just read the recent posts I find it difficult to put some words together for this one. Yes things are tough at the moment, tough, that's a word my wife often uses but that's due to her lack of empathy. But the recent posts just emphasise to me that there are many a lot worse off. What on earth am I posting at this time for. Forty five minutes ago she woke me up, shouting my name from her room, she'd fallen out of bed and couldn't stand up. I could have just said , tough, that's what she would have said. But my empathy bank isn't like hers, mines full, so I helped her to stand, not an easy task, far from it. But we eventually got there, now she's safely back in her bed and I'm lying here , wide awake, posting at a very early hour in the hope it will make me sleepy enough to get another couple of hours before it all starts over again. As i left her safe, i received a thank you for helping. That doesn't sound like much but these days a thank you is extremely rare. I'll not forget it, i don't know when the next one might be. Some time ago I can remember asking , when does late become early, a question I sometimes asked myself on those long night shifts. I think I know what the answer is now. It's late now so I'll try to get some sleep before it gets even earlier, Al.

 

[AL60]

I loved longer days when things were more or less ok.
I am not sure I love them currently.
Longer days means I have to stay more time with OH, my nights (the only me time) will be shorter..
It is so sad, but I long for my day to be over and darkness and bedtime to set me free

Hi. I know what you mean, every day is long , sometimes too long, and the longer the day , the less 'me' time, there's a lot to be said for the longer winter night. But i need the longer days of summer, i can always fit some blinds in her bedroom then she hopefully won't be up wandering. Look at the time and still not sleepy. I'm half tempted to go and put the kettle on, mmm tea, best drink of the day Best not, the days are long enough without stretching them even further . Today is Friday, i get my two hours off, not much I know, but every little helps. Al.

 

[margherita]

Hi. I know what you mean, every day is long , sometimes too long, and the longer the day , the less 'me' time, there's a lot to be said for the longer winter night. But i need the longer days of summer, i can always fit some blinds in her bedroom then she hopefully won't be up wandering. Look at the time and still not sleepy. I'm half tempted to go and put the kettle on, mmm tea, best drink of the day Best not, the days are long enough without stretching them even further . Today is Friday, i get my two hours off, not much I know, but every little helps. Al.

Good morning ,Al.
I like having an early cup of coffee (an Italian espresso) when my husband is still sleeping and I can be on my own.
Enjoy your two hours off, you should need many more, shouldn't you?

 

[Philbo]

Thank you for those kind thoughts, Carolyn and morning Al, hope you have one of your good days today. I guess when friends, relatives or others say that they couldn't do it (as Nanawendy6 mentions), it's because perhaps, they've never had to? I would probably have said the same thing before my wife developed this awful condition.

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".

My wife's brother-in-law (her sister's husband) has sadly just been diagnosed with terminal pancreatic cancer. The doctors have given him 5 months, possibly less. I feel very sad for the both of them (and their family) and will support them the best I can but a little bit of me thinks that at least their horrible journey will be a short one. Then the guilt monster kicks in again!

Right, I must snap out of it - it's Friday, the "get her up and in the shower and wash her hair day" - deep joy. At least we'll get to go down the pub tonight - my safe haven and source of some resemblance of sanity.

Or as the guy in "bargain loving Brits in the sun" would say, "Happy Days".

Phil

 

[AL60]

Hi, once again . Today my wife has been oddly quiet, it's almost been a pleasure to be with her nothing different, other than falling out of the bed early this morning and saying thank you, for helping her to get back in to bed.. That too is out of character. But don't knock it , from past experience normal service could well be resumed tomorrow. So, today can go down as a good day, enjoy the moment . Just as well as my two-hour break had to be cancelled. My sitter has had a family problem. Not to worry, I'll try again next week. Was looking forward to that pub lunch with friends though, never mind it'll keep for again. Well, after an almost perfect day she's now gone to bed early. I've tried to fasten the freshly laundered bedding under the mattress so she can't fall out. The first thing she did was pull all the bedding loose, put it in a heap at the bottom of the bed and then settle down across the bed at ninety degrees . Say nothing and let her get on with it. That's it then , a quiet evening ahead, lots of free time alone to sit comfortably and think how much nicer things could've been in a more normal life. Al.

 

[AL60]

Thank you for those kind thoughts, Carolyn and morning Al, hope you have one of your good days today. I guess when friends, relatives or others say that they couldn't do it (as Nanawendy6 mentions), it's because perhaps, they've never had to? I would probably have said the same thing before my wife developed this awful condition.

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".

My wife's brother-in-law (her sister's husband) has sadly just been diagnosed with terminal pancreatic cancer. The doctors have given him 5 months, possibly less. I feel very sad for the both of them (and their family) and will support them the best I can but a little bit of me thinks that at least their horrible journey will be a short one. Then the guilt monster kicks in again!

Right, I must snap out of it - it's Friday, the "get her up and in the shower and wash her hair day" - deep joy. At least we'll get to go down the pub tonight - my safe haven and source of some resemblance of sanity.

Or as the guy in "bargain loving Brits in the sun" would say, "Happy Days".

Phil

Hi Phil. Just a line about your comment about the envy then the guilt feeling, i guess that's normal, i get it too, thankfully it soon passes, but occasionally mine turns to anger at myself for thinking such thoughts . I guess there aren't many emotions you don't go through. Sometimes all in a very short time. Dementia really is destructive, im going all out to stop it destroying me, the carer. Stay strong. Easier said than done, but I'm giving it my best shot must go now , judging by the aroma coming from the kitchen, it think my evening meal could be ready, ,,or burnt,,,, Al.

 

[Amethyst59]

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!

 

[AL60]

Hi, once again . Today my wife has been oddly quiet, it's almost been a pleasure to be with her nothing different, other than falling out of the bed early this morning and saying thank you, for helping her to get back in to bed.. That too is out of character. But don't knock it , from past experience normal service could well be resumed tomorrow. So, today can go down as a good day, enjoy the moment . Just as well as my two-hour break had to be cancelled. My sitter has had a family problem. Not to worry, I'll try again next week. Was looking forward to that pub lunch with friends though, never mind it'll keep for again. Well, after an almost perfect day she's now gone to bed early. I've tried to fasten the freshly laundered bedding under the mattress so she can't fall out. The first thing she did was pull all the bedding loose, put it in a heap at the bottom of the bed and then settle down across the bed at ninety degrees . Say nothing and let her get on with it. That's it then , a quiet evening ahead, lots of free time alone to sit comfortably and think how much nicer things could've been in a more normal life. Al.

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.

 

[dancer12]

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:

She probably tours the kitchen & fridge to see what you've left for her to eat. This time she was confused by the time and you caught her. And you thought you had mice. Hope you didn't put out any mouse traps.