Two years to get this bad. What now?

[jenniferjean]

I hope you have some good ME time this afternoon. I was told yesterday of someone who could come and take OH out for a couple of hours, but he's having none of it.
I did say to him that it would give me a break, but oh dear was that the wrong thing to say.

 

[canary]

Yup, the bathroom will still be there tommorrow I hope you found something nice to do

I did say to him that it would give me a break, but oh dear was that the wrong thing to say.

When empathy is gone, that wont work. FTD often reduces them to like/dont like; want/dont want reactions, so try and think of something that the person who is taking him out could do that he would like - and you are totally rubbish at

 

[Everton Annie]

Hi all I don't always tell my husband in advance that people are coming so they just come in and have a coffee and a chat and then ask if he will accompany them on a walk. He hates saying no so will go out with them. I get 4 hours a week and have been offered more but husband is so sleepy much of the time it isn't worth it so instead I have asked for more regular respite and I think for the time being that will work for me. Sometimes I think it would be great to have him here in the day and sleeping elsewhere because the lack of sleep is what does me in. And Al60 I feel the same about wasted time. Always a phonecall or two to be made when on my own. Have a peaceful night everyone.

 

[AL60]

Hi. Ever played snakes and ladders? I really did think I was winning today, then landed on the longest snake on the board and ended up going back to square one. Honestly, I really have enjoyed today. All I did was take a walk into town. On the way I met several people I hadn't seen for some time. It was good to stop and chat with no pressure to hurry or to be somewhere else, totally relaxing. When my wife arrived home she too was in a relaxed mood. I did ask what she'd had for lunch, though I knew what the answer would be. Cake and a drink. Cake, always cake. Then as the evening wore on, her mood seemed to get worse. It started with Facebook, I hate facebook. Anyway, she couldn't find the right facebook. I've had this before, I have spent ages logging out then signing back in, just in the hope I get into the facebook in our dimensionI wouldn't mind but all she does is see what our daughters are up to, and then constantly complain about them. To be honest, I thought she'd given up on Facebook, I've not seen her on it for some time. Anyway, now she can't get netflix, again as fast I put it on, she does no more than switch it off, then thrusts it back to me saying, there, it's not working. It's gone quiet now at last, let's hope it stays that way. Canary. Everything you say, I see. The, absence of empathy , and the likes and dislikes are all there. There's no middle way. But knowing why it's happening only helps a little. The empathy thing has been noticeable for a long time, in fact sometimes she can come across as totally unfeeling and even hateful. So unlike the person I used to know. Oh well, that's another day over. The bathroom cleaning has been added to the to-do list, The to do list is written on an easy clean white board so if it seems too much I just wipe it clean and start over again. My priorities have changed over the last couple of years, life's too short , I can always tidy up tomorrow.Al.

 

[AL60]

I hope you have some good ME time this afternoon. I was told yesterday of someone who could come and take OH out for a couple of hours, but he's having none of it.
I did say to him that it would give me a break, but oh dear was that the wrong thing to say.

Hi,thanks, ME time today went exceptionally well. Probably helped by the fact there was no guilt attached. She was out with her friends having a nice time herself. And yes, I've made the mistake of saying the wrong thing, its those eggshells again, you really need to be careful Al.

 

[dancer12]

Hi. Ever played snakes and ladders? I really did think I was winning today, then landed on the longest snake on the board and ended up going back to square one. Honestly, I really have enjoyed today. All I did was take a walk into town. On the way I met several people I hadn't seen for some time. It was good to stop and chat with no pressure to hurry or to be somewhere else, totally relaxing. When my wife arrived home she too was in a relaxed mood. I did ask what she'd had for lunch, though I knew what the answer would be. Cake and a drink. Cake, always cake. Then as the evening wore on, her mood seemed to get worse. It started with Facebook, I hate facebook. Anyway, she couldn't find the right facebook. I've had this before, I have spent ages logging out then signing back in, just in the hope I get into the facebook in our dimensionI wouldn't mind but all she does is see what our daughters are up to, and then constantly complain about them. To be honest, I thought she'd given up on Facebook, I've not seen her on it for some time. Anyway, now she can't get netflix, again as fast I put it on, she does no more than switch it off, then thrusts it back to me saying, there, it's not working. It's gone quiet now at last, let's hope it stays that way. Canary. Everything you say, I see. The, absence of empathy , and the likes and dislikes are all there. There's no middle way. But knowing why it's happening only helps a little. The empathy thing has been noticeable for a long time, in fact sometimes she can come across as totally unfeeling and even hateful. So unlike the person I used to know. Oh well, that's another day over. The bathroom cleaning has been added to the to-do list, The to do list is written on an easy clean white board so if it seems too much I just wipe it clean and start over again. My priorities have changed over the last couple of years, life's too short , I can always tidy up tomorrow.Al.

It's amazing how a person can be relaxed all day and after spending only 5 minutes with the person that was the love of their life, the person they cherished and would give their life for makes you feel like the life is being strangled out of you. It boggles the mind.

 

[canary]

I think you are doing OK Al. The period of confusion in the evenings sounds like sundowning to me. I understand that knowing why things happen doesnt help a lot, but I found it comforting to find out that things that happened to me were known problems and had happened to others too.

 

[AL60]

Hi. It's, right, five minutes can be all it takes, sometimes less. And how just those five minutes can spoil a nice day. I nearly said perfect day but refrained from that, there's no such thing as perfect anymore. We just try and make the best of what we have.
I've heard about the sundowning and must admit that did cross my mind. There have been other occasions when it's crossed my mind. I can remember going into the darker evenings of autumn and winter, expecting the worse. No, she was fine. Perhaps the lengthening days of spring are making the days that bit too long to cope with. I know she's staying up later. The days are going to get longer, now I worry about that. Think I'm a born worrier.there has been a change for the worse of late, she is getting extremely confused over days dates and times, she hasn't been too good on that for a long time. Now she can't follow or understand a calendar. Just this morning April has been deleted, just as well it's nearly over. Also a good job I have a back up calendar. Gotta go now, I've been out of her sight for too long and duty once again is calling. That's the downside of daytime posting Al.

 

[AL60]

Hi again. I haven't posted on here for a few days. Not for any particular reason, nothing has changed, not for the better at any rate. It feels as though I'm stuck in a continuous loop, every day, the same things over and over again. However, tonight was different. I went out , on my own. A friend of mine was having a retirement 'do'. I promised myself that whatever obstacles were put in my way I was not going to miss this one. So after preparing my wife's tea, I was off, nice and early leaving her in the capable hands of my youngest daughter. Two glasses of beer and three hours later, I was home. It isn't long, half five until half eight. But what a difference it makes. For three whole hours I was me again, talking with old friends, some I hadn't seen for ten years or more. Then that was it, over and done. On arriving home you would have thought I'd committed some kind of heinous crime. It makes me wonder if it was worth it. This makes me wonder if it's going to be like this when the sitting service gets up and running, it's so upsetting for her , I know, but for both our sakes we need a little bit of space. Tonight has made me realise just how beneficial it can be. Hopefully this coming weekend will be better too. Tomorrow is a special day. It's my wife's birthday, I'll just say it's a significant oneI'll not say how old, it wouldn't be polite but just over a year ago I reached 60, and I'm just over a year older than herso, a good family get together should hopefully take some of the pressure off me, I hope. We're all out for a family meal on Sunday. Now I might treat myself to the Sunday lunch, my wife will be quite happy with a pudding for the main course then cake for dessert. I used to worry but not any more. As long as she's eating something and she's happy, that's fine by me. Well, that's all for now. Tomorrow I'm taking her to a local garden center, my eldest daughter is coming too, after that we'll just make it up as we go along. They can be some of the best days. Al

 

[Chuggalug]

Hi again. Certainly wasn't intending to post again so soon. But as it's the wrong side of midnight and once again find sleep isn't coming easy tonight, this seemed a good idea. It's looking to me as though we really are all in this together. So many similarities everywhere on this site. It could be seen as depressing, or, it could be seen as a wealth of useful information. I have a question, and I know someone, somewhere out there will have a number of ideas and suggestions for me. Mealtimes are becoming a nightmare. Just lately the food smells funny, it's too hot ,it's not hot enough, is this the one we normally have, it just doesn't taste right, the plates, cups etc smell perfumed. To me it seems just an excuse not to eat. And believe me it's any excuse not to eat. But any amount of junk goes down a treat. I know the obvious answers, don't buy the crisps, chocolate, cake and biscuits. You try stopping her. It's like having a very grown up child. If food isn't hot enough, heat it, no, can't have that. If it's too hot , let it stand, good grief no, can't have it its too hot. You just can't reason with her. And that's only meal times. This isn't working, I'm even more awake now. The reason I'm concerned about her lack of normal appetite is over the last couple of years she's lost about forty lbs give or take. It's important too that she has a nutritional diet now more so than ever. But try telling her that. I know that there are lots of things I could try but one of the problems is that she doesn't like change. Just keeping to the tried and tested isn't working. If she had the choice she'd have beans on toast every meal. I've wondered if the dementia has altered her sense of taste. Anyway, best go now. Croissants for breakfast, can't go wrong there, can I? Al

I probably understand a bit more about my husband in the few years now before he got dementia. He always complained of a lack of taste, or that the food tasted disgusting, and he was still our cook at that time. That went on for a few years. Before that set in, he used to love experimenting in the kitchen with new tastes. I took over the cooking in late 2009 and never got any more trouble. He was convinced he'd been given something at the dentist which disagreed with him when he had his new dentures made up and fitted. He'd been a few times to get prepped for them, and hardly wore them because they hurt him. Then the taste issue came up.

I know now that I have to keep a very clean dishcloth and water for things like cups and glasses, or they add a taste to my morning coffee. Clean water and plenty of rinsing after washing. Strange, ain't it. It's only happened since I got older. But I do notice if the cup hasn't been washed and rinsed to my satisfaction. Good thing I live alone or someone would be getting the blame!

 

[Chuggalug]

My partner is quite happy, he is self contained, he does not worry, he is totally unconcerned with his diagnosis ( 2 months ago) of vascular dementia. He is home all day recovering from major surgery which made the dementia so much worse. He does a few puzzles and watches dvd's, and will come with me for a short walk around our village.

Me? Well, I cook, I clean, I do all the housework, I garden, most importantly, I care for himself, I also am trying to salvage the remnants of my business which I had to close recently - and trying now to work from home - I am a genealogist. I deal with the mountains of forms and all the people that keep coming in connection with the diagnosis, social services etc etc.

The only thing I am complaining about, really, is that even though my dearest partner lives in the house with me, it is like living alone. There is nothing, no conversation, no affection, no nothing - yet it's only 2 months since he was diagnosed - why does it all seem to be moving so quickly?

I find it really rather scary

rant over

That doesn't read like a rant, Maryjoan; it reads like someone trying to come to terms with something strange which has entered your life without permission. That's how it felt for me. I now realise what I was beginning to see back in 2008. I'm amazed just how much I'd forgotten living through. Reading this thread brings it all back. Lonely is exactly what it is.

The one thing I could never imagine was feeling peaceful enough to sleep properly again. After so many years, it takes time to come back to your own equilibrium. I think that's what's just happened after the last week. Yes. The awful loneliness was bad. I feel for you, very much.

 

[dancer12]

Hi again. I haven't posted on here for a few days. Not for any particular reason, nothing has changed, not for the better at any rate. It feels as though I'm stuck in a continuous loop, every day, the same things over and over again. However, tonight was different. I went out , on my own. A friend of mine was having a retirement 'do'. I promised myself that whatever obstacles were put in my way I was not going to miss this one. So after preparing my wife's tea, I was off, nice and early leaving her in the capable hands of my youngest daughter. Two glasses of beer and three hours later, I was home. It isn't long, half five until half eight. But what a difference it makes. For three whole hours I was me again, talking with old friends, some I hadn't seen for ten years or more. Then that was it, over and done. On arriving home you would have thought I'd committed some kind of heinous crime. It makes me wonder if it was worth it. This makes me wonder if it's going to be like this when the sitting service gets up and running, it's so upsetting for her , I know, but for both our sakes we need a little bit of space. Tonight has made me realise just how beneficial it can be. Hopefully this coming weekend will be better too. Tomorrow is a special day. It's my wife's birthday, I'll just say it's a significant oneI'll not say how old, it wouldn't be polite but just over a year ago I reached 60, and I'm just over a year older than herso, a good family get together should hopefully take some of the pressure off me, I hope. We're all out for a family meal on Sunday. Now I might treat myself to the Sunday lunch, my wife will be quite happy with a pudding for the main course then cake for dessert. I used to worry but not any more. As long as she's eating something and she's happy, that's fine by me. Well, that's all for now. Tomorrow I'm taking her to a local garden center, my eldest daughter is coming too, after that we'll just make it up as we go along. They can be some of the best days. Al

Hi:

Glad to here you are getting out more and taking more time for yourself. You have now jumped over a major hurdle, you've started realizing that you are a person too. Don't alienate your friends. We all love our husbands, wives, mothers fathers, etc. but we are also people too. Call me selfish but I need to keep my sanity. Be it 5 minutes or 3 hours in a tension free environment works wonders. Then we can return to a tension filled zone and start the sequence all over again and again and again and again. Glad to hear days are better. Sunshine, longer days and warmer weather works wonders every time.

They say older & wiser, maybe this generation has it right, work can wait, it's time for a vacation.

Hope your wife enjoys her birthday and takes time out to smell the beeless flowers.

 

[Quakeroat1]

My partner has been reading a book called The selfish pigs guide to caring by Hugh Marriott it's about how to cope with emotional and practical aspects of caring for a loved one.
She is engrossed in it ....says everyone should read it.

 

[Spamar]

I've got/read it. Honestly, I felt that, like most books of the kind, there was good and bad. Care should be for the individual. I suggest you should tell your partner what would suit you! I'll have a reminder session in a bit and come back!

 

[AL60]

Hi. It's been a while since I was last here. At least a week and a bit. Once again the tablet has been in for repair. Funny thing, whenever she manages to break it, it's always me who does without while she has the spare. Anything for a quiet life. Ha, quiet! No chance. A few days ago someone asked us where we first met. I was well into telling them when my wife butted in, sorry, angrily interjected, that isn't right, she was getting quite upset at this stage, when we met I was with Sara, our eldest daughter. It wasn't really worth arguing. As you know, as we all know, caring for a dementa sufferer is extremely frustrating at times, so occasionally you can allow yourself a smile. I must admit,, I'm not finding the role of caring and easy one. Probably the toughest job I've ever had, but I like to think I'm getting used to it. At least for today. Al

 

[dancer12]

Hi. It's been a while since I was last here. At least a week and a bit. Once again the tablet has been in for repair. Funny thing, whenever she manages to break it, it's always me who does without while she has the spare. Anything for a quiet life. Ha, quiet! No chance. A few days ago someone asked us where we first met. I was well into telling them when my wife butted in, sorry, angrily interjected, that isn't right, she was getting quite upset at this stage, when we met I was with Sara, our eldest daughter. It wasn't really worth arguing. As you know, as we all know, caring for a dementa sufferer is extremely frustrating at times, so occasionally you can allow yourself a smile. I must admit,, I'm not finding the role of caring and easy one. Probably the toughest job I've ever had, but I like to think I'm getting used to it. At least for today. Al

I always thought that the challenges in life made the quiet times more enjoyable.

 

[AL60]

Hi. That's quite true, the quite times do become more enjoyable. But just lately im finding it takes longer to wind down at the end of another long day. To add to the stress I feel like I've made a wrong choice regarding medical treatment I received recently. I won't go into detail but a simple eye injection has left me with temporary double vision. I knew the risk, 1 in 10, well, I was the one. Things we're bad enough before, but now, think I'm going stir crazy. I really am finding it hard to put up with her foul moods and bad tempers. She's been this way for some time. At first, her, darker moods would soon pass and then be forgotten but now it seems to be more and more frequent and last longer. And of course, it's always my fault. Thinking back, nothings changed much there. So, here I am, feeling sorry for myself, can't really go anywhere, don't say go for a walk instead, there's no way she's up for that. I just previewed this post, it would appear that I too am off on one tonight. But it's been a bad day. The constant battle with the washing machine and tumble dryer continues, that's been the source of many an argument. Between that and medication arguments plus complaints about the food l prepare for her. She eats hardly anything now. Her list of likes is getting even smaller now. There'll be nothing left soon. My youngest daughter and her boyfriend we're home for tea tonight. I made a meat and potato pie for us. I must admit, it was rather goodbut my wife couldn't be tempted. Disgusting, she said, you'll make yourselves ill eating that. She had baked potato and pizza, she asked where the potatoes were from, told her they're the ones she always has. They are now in the bin. Don't buy those again she says. Honestly, there won't be anything she likes at this rate. So, off too sleep now and hopefully things will look better tomorrow, I might wake up tomorrow and find my vision has returned to normal, if not I'll just try to make the most of a hopefully quiet Sunday. Al

 

[SoAlone]

Hi. That's quite true, the quite times do become more enjoyable. But just lately im finding it takes longer to wind down at the end of another long day. To add to the stress I feel like I've made a wrong choice regarding medical treatment I received recently. I won't go into detail but a simple eye injection has left me with temporary double vision. I knew the risk, 1 in 10, well, I was the one. Things we're bad enough before, but now, think I'm going stir crazy. I really am finding it hard to put up with her foul moods and bad tempers. She's been this way for some time. At first, her, darker moods would soon pass and then be forgotten but now it seems to be more and more frequent and last longer. And of course, it's always my fault. Thinking back, nothings changed much there. So, here I am, feeling sorry for myself, can't really go anywhere, don't say go for a walk instead, there's no way she's up for that. I just previewed this post, it would appear that I too am off on one tonight. But it's been a bad day. The constant battle with the washing machine and tumble dryer continues, that's been the source of many an argument. Between that and medication arguments plus complaints about the food l prepare for her. She eats hardly anything now. Her list of likes is getting even smaller now. There'll be nothing left soon. My youngest daughter and her boyfriend we're home for tea tonight. I made a meat and potato pie for us. I must admit, it was rather goodbut my wife couldn't be tempted. Disgusting, she said, you'll make yourselves ill eating that. She had baked potato and pizza, she asked where the potatoes were from, told her they're the ones she always has. They are now in the bin. Don't buy those again she says. Honestly, there won't be anything she likes at this rate. So, off too sleep now and hopefully things will look better tomorrow, I might wake up tomorrow and find my vision has returned to normal, if not I'll just try to make the most of a hopefully quiet Sunday. Al

Al60, we are on a very similar journey not sure that helps but our points of conflict are pretty much the same. Washing and dryer both do both, I am constantly told, which is one of the easier battlegrounds to avoid, but food 'don't get that again' and my awful cooking resound on a regular basis. If I took notice we would have no meals whatsoever as nothing is ever on the 'I like that' list. My cooking, after 30 years has become atrocious added to which I am responsible for all the ills in the world from world peace to recycling and the doctor removing his driving licence.
No one visits or rings him so I am told regularly, oh and yesterday I was told I could move out. I drew the line at that, much as it appeals and pointed out that as I paid the mortgage I would stay and he can look elsewhere. Mean I know but on occasions I just feel the need to stand my ground. We had a really good Sunday having said all that, hope you did too

 

[dancer12]

Hi. That's quite true, the quite times do become more enjoyable. But just lately im finding it takes longer to wind down at the end of another long day. To add to the stress I feel like I've made a wrong choice regarding medical treatment I received recently. I won't go into detail but a simple eye injection has left me with temporary double vision. I knew the risk, 1 in 10, well, I was the one. Things we're bad enough before, but now, think I'm going stir crazy. I really am finding it hard to put up with her foul moods and bad tempers. She's been this way for some time. At first, her, darker moods would soon pass and then be forgotten but now it seems to be more and more frequent and last longer. And of course, it's always my fault. Thinking back, nothings changed much there. So, here I am, feeling sorry for myself, can't really go anywhere, don't say go for a walk instead, there's no way she's up for that. I just previewed this post, it would appear that I too am off on one tonight. But it's been a bad day. The constant battle with the washing machine and tumble dryer continues, that's been the source of many an argument. Between that and medication arguments plus complaints about the food l prepare for her. She eats hardly anything now. Her list of likes is getting even smaller now. There'll be nothing left soon. My youngest daughter and her boyfriend we're home for tea tonight. I made a meat and potato pie for us. I must admit, it was rather goodbut my wife couldn't be tempted. Disgusting, she said, you'll make yourselves ill eating that. She had baked potato and pizza, she asked where the potatoes were from, told her they're the ones she always has. They are now in the bin. Don't buy those again she says. Honestly, there won't be anything she likes at this rate. So, off too sleep now and hopefully things will look better tomorrow, I might wake up tomorrow and find my vision has returned to normal, if not I'll just try to make the most of a hopefully quiet Sunday. Al

Hi:

Sorry about your eye, hope it gets better soon - but look on the bright side you currently have two visions of your lovely wife complaining, yelling, arguing etc etc etc. and when your vision returns to normal you'll only have one. But serious I think you miss socializing with friends and are upset, frustrated, tired and even a bit angry that you are housebound and can't go out when you would like I know you love your wife and she loves you too. She's most likely frustrated too. You are both eating off each others frustrations and the circle goes round & round. Don't know how mobile your wife is but my husband is still able to get around. We have a library meeting that we go to, also on bus trips and walks. Is there something like that where you live (just to get out of house), she might enjoy meeting other people. What are her interests? You need to get away from each other for awhile (an hour or two every few days).

For her lack of eating, have you tried nutritional drinks. We have this nutritional drink called Boost, it's for older people who don't eat enough. It comes in different flavours and actually tastes like a milkshake. Tastes better when cool. Be crafty & try your acting skills, drink one yourself first and she might want one too.

Good Luck.

 

[AL60]

Al60, we are on a very similar journey not sure that helps but our points of conflict are pretty much the same. Washing and dryer both do both, I am constantly told, which is one of the easier battlegrounds to avoid, but food 'don't get that again' and my awful cooking resound on a regular basis. If I took notice we would have no meals whatsoever as nothing is ever on the 'I like that' list. My cooking, after 30 years has become atrocious added to which I am responsible for all the ills in the world from world peace to recycling and the doctor removing his driving licence.
No one visits or rings him so I am told regularly, oh and yesterday I was told I could move out. I drew the line at that, much as it appeals and pointed out that as I paid the mortgage I would stay and he can look elsewhere. Mean I know but on occasions I just feel the need to stand my ground. We had a really good Sunday having said all that, hope you did too

Hi. We really are on a similar journey. Your post could well be mine. Cheese and new potatoes, that's the flavour of the month, for now. I've no doubt that next week or next month, that too will be disgusting. Then her dietary choices become even narrower. Hey, I get that too, why don't you move out thing from time to time. Don't tempt me though she knows I won't go. At the moment I'm getting around using public transport. I would love to walk but being unable to leave her home alone we use bus or taxi. I'll be glad when my vision returns to normal. It isn't permanent, so I'll not complain, there are plenty worse off. The next battle will start in about an hour. Night time tablet. It's never easy is it . There's always something to worry over. Al.