Two years to get this bad. What now?
- Thread starter AL60
- Start date
Hi:
Glad to hear things are getting better. There is now a light on the other side of this tunnel of greyness that so many of us have unwillingly found (hope it's not just someone with a flashlight but even if it is at least there will be someone to talk to). Here's hoping that both you & your wife have found that light.
When my husband retired I relinguished my lawn mowing duties, I handed over the gascan to him (we have a gas powered mower). At the end of the day everyone needs to feel like they accomplished something. I reluctantly gave up my lawn mowing skills to him. The laundry I don't worry to much about, if something turns out pink, I just say boy that colour looks nice on you, if the dryer shrinks something, it's a Christmas gift for one of the grandkids or the dog/cat.
The sun always comes up the next day, at some time, whether we worry or not, Have a good one. Keep smiling, be happy & try to relax. Easier said than done sometimes.
Al 60 - Reading your thread makes me feel more human. Much of your experiences are akin to mine. I am struggling to deal with the constant spiteful/unpleasantness and OH long loud opinions on my shortcomings.I must admit the thought that this will continue for another 2 years fills me with dread regarding my ability to cope. Like you I appear confident and easy going but I am really screwed up inside. I am comforted too by other people admitting that they have considered walking away, as I have and not just in temper but because I feel that if he hates me so much and feels I am the root of all his trouble, then maybe I am not the best person to look after him. But then reality sets in and the fact, that much as he hates it I am all he has got. He is still able to function on so many levels that he doesn't need a care home and I am thankful for that but being the sole but of his ill humour is wearing beyond belief.
On a lighter note we also have the issue with the washing, which gets done in the dryer sometimes, luckily I use 'pods' not powder which seem to survive the hour in the tumble drier without bursting. I just put the washing away and gradually filter it back into the wash again without too much trouble.
On a lighter note we also have the issue with the washing, which gets done in the dryer sometimes, luckily I use 'pods' not powder which seem to survive the hour in the tumble drier without bursting. I just put the washing away and gradually filter it back into the wash again without too much trouble.
Hello again. Well you'll be pleased to know that today was almost normal. Until tea time anyway. Honestly, it's almost as if a switch is thrown. Instantly nice to nasty. The biggest shame of it is my youngest daughter thought it was her fault, as the mood change coincided with her arrival from work. I totally agreed and asked her when she was moving out. Please note that I was only joking. Normally when my daughter is home things are much better. We are both suffering from the tongue lashings from mum ,so much so that my youngest daughter is now on medication for stress and anxiety. That can't possibly be right can it.
I think myself and SoAlone might be at the same stage, reading her post just now, I could see so many similarities. I too sometimes think of running away. But thats just the desperation of feeling so helpless, it's never going to happen, I'm in for the long haul. At the present time I feel like I'm in the same state as dancer12',s lawnmower, in pieces. We don't have a lawnmower, we have a grass cutter, I feel unable to call ours a lawn, it's just grass. And every year the lead gets a bit shorter, but that's my fault for not being careful. But today, late on this afternoon myself and my daughter were out in that same garden, trying to get it tidied and looking nice, but no, as fast as we were planting my wife was out shouting about not planting this or that, digging things up after we'd planted them. Words fail me. But we're not going to give in. We both know it's the dementia not mum. Still doesn't make it any easier though. So after a couple of quiet days, things are sadly now back to normal. It was good while it lasted. So. The easter weekend is stretched out ahead of us. I've no doubt that at some point she'll want to go someplace for the day. I can see it now, its always the same conversation. I'll ask, "Where would you like to go" and the answer is always the same, "you decide " then after reeling off a long list of ideas each one is met with, don't like it there or no shops or difficult to get a parking space or even just , no, been there before. And if I do manage to get her to go somewhere as soon as we arrive she wants to go home. Don't worry I know why, she doesnt enjoy busy places anymore, she probably doesn't even realise that herself. The crowds of people and the noises are all a bit too much. If the weather is good I'll perhaps take her to one of those national trust gardens nearby. I'll avoid the houses though. We went to one last year, we arrived early, went through the front door, flew through the place, then had to wait a couple of minutes while they opened the back door , the lady with the key seems quite surprised we'd got through so quickly. We'd only seen her five minutes before when she'd opened up the front door. Anyway, as soon as we got out I asked her what next? Home she replied, I've had enough. I didn't need convincing, we were home for lunchtime this happens quite frequently now.OK then, said enough for one post. So I'll sign off for now , enjoy the easter break, Al.
I think myself and SoAlone might be at the same stage, reading her post just now, I could see so many similarities. I too sometimes think of running away. But thats just the desperation of feeling so helpless, it's never going to happen, I'm in for the long haul. At the present time I feel like I'm in the same state as dancer12',s lawnmower, in pieces. We don't have a lawnmower, we have a grass cutter, I feel unable to call ours a lawn, it's just grass. And every year the lead gets a bit shorter, but that's my fault for not being careful. But today, late on this afternoon myself and my daughter were out in that same garden, trying to get it tidied and looking nice, but no, as fast as we were planting my wife was out shouting about not planting this or that, digging things up after we'd planted them. Words fail me. But we're not going to give in. We both know it's the dementia not mum. Still doesn't make it any easier though. So after a couple of quiet days, things are sadly now back to normal. It was good while it lasted. So. The easter weekend is stretched out ahead of us. I've no doubt that at some point she'll want to go someplace for the day. I can see it now, its always the same conversation. I'll ask, "Where would you like to go" and the answer is always the same, "you decide " then after reeling off a long list of ideas each one is met with, don't like it there or no shops or difficult to get a parking space or even just , no, been there before. And if I do manage to get her to go somewhere as soon as we arrive she wants to go home. Don't worry I know why, she doesnt enjoy busy places anymore, she probably doesn't even realise that herself. The crowds of people and the noises are all a bit too much. If the weather is good I'll perhaps take her to one of those national trust gardens nearby. I'll avoid the houses though. We went to one last year, we arrived early, went through the front door, flew through the place, then had to wait a couple of minutes while they opened the back door , the lady with the key seems quite surprised we'd got through so quickly. We'd only seen her five minutes before when she'd opened up the front door. Anyway, as soon as we got out I asked her what next? Home she replied, I've had enough. I didn't need convincing, we were home for lunchtime this happens quite frequently now.OK then, said enough for one post. So I'll sign off for now , enjoy the easter break, Al.
God must have given you a double dose of patience. You've got me beat. I was hoping with the nice weather outside things would start to turn around for you, but I guess I was wrong. Like my husband always says there's something wrong with you (meaning me) not me (meaning himself).
Don't know how old you daughter is but I don't believe she should be on stress & anxiety medication. My younger son (22) is still at home and I pray every night that he finds somewhere else to stay. Because I know what the future is going to bring for my husband and I don't really want him to witness it. My dad had dementia and I saw what it did to my mom.
My lawnmower is back in one piece, it works great. I just have to switch handles now.
Hope tomorrow is better. Try to enjoy Easter. You may be surprised. Hope for the best.
God must have given you a double dose of patience. You've got me beat. I was hoping with the nice weather outside things would start to turn around for you, but I guess I was wrong. Like my husband always says there's something wrong with you (meaning me) not me (meaning himself).
Don't know how old you daughter is but I don't believe she should be on stress & anxiety medication. My younger son (22) is still at home and I pray every night that he finds somewhere else to stay. Because I know what the future is going to bring for my husband and I don't really want him to witness it. My dad had dementia and I saw what it did to my mom.
My lawnmower is back in one piece, it works great. I just have to switch handles now.
Hope tomorrow is better. Try to enjoy Easter. You may be surprised. Hope for the best.
Hi Dancer. There are many times I lose my patience, I'm no saint. Walking away to another room never seems to work, at those times she just follows going on and on about how useless I am and how everything is my fault. My youngest daughter was 21 at Christmas, my eldest will be 40 soon with two more daughters in between. So I've had the best part of 40 years to hone my patience skills and learn the futility of arguments i never really won any then either My youngest is going away this morning off on a camping break, so whatever the weather, she's in a calmer place. That's it for now. Thanks for listening. Al.
She (your daughter) needs a break as much as you do. It's easy to fix a broken machine but not so easy to fix a broken heart.
I think we are in a similar place Al60. I am not as confident as you that |I can handle this in the long haul, but I am still there and every day that passes that is one more dealt with and I am still in one piece. Luckily OH's children are all grown up and away from home. Lucky for them not for me as their visits/calls become less frequent. We have had a reasonably quiet Easter. But wanted to say I too face the 'I need to go out' but nowhere I suggest is right. equally everywhere is either 'dead' (too quiet) or unbearbaly busy and noisy and everyone is shouting. Hang on in there everyone. I just say thank goodness we don't know what tomorrow will bring
Hi. I don't get it, the number of times I sign in, then finger poised over the pad and then find myself lost for anything to say. But there are many things to say and once the words start they're hard to stop. But not tonight, not yet anyway. I should like to say to SoAlone that I'm one of the least confident people I know. Honest. I might sound like I know what I'm talking about in these posts but really, I'm just muddling through every day, trying my best not to mess up. It sometimes feels like that plate spinning thing you used to see in the circus back in the day, take your eye off things for a couple of seconds and everything comes crashing down.
It's right, whenever I say, " where would you like to go today ?" The answer is always the same, "You decide" . Then wherever I suggest it's no for whatever reason. I'm sure it's not only SoAlone and me that have this problem. Just before Christmas I took my wife to the Manchester Christmas markets, she always used to enjoy that. Not this time, there were no shops! It's easy to become trapped in our own little world, isolated and feeling so alone, but we're not alone. There are so many in the same position. But the feeling of isolation can sometimes be overwhelming, even in a crowded place. So, what do we do? We post on here, and for a while the feeling of isolation goes away. We share our thoughts and feelings and for a time we realise we're all the same, same problems, same worries, same fears. Good grief, at this rate I'll be joining the ramblerscertainly done some rambling tonight Anyway, I haven't posted on here for a few days. Thats because I didn't feel the need. The easter weekend was very quiet, don't get me wrong, it's had its share of moments but nothing serious. My wife has been very quiet, unnaturally so, mustn't complain. Although I do find it unnerving. I find myself walking on eggshells, it only takes a second to change things. One wrong question and that's it, she's off again. Then that's another day ruined. Not too long ago, if something or someone, I. e. me, upset her, then any bad temper would subside after a few minutes. Not now. Once she starts now it sets in for the day. And it can make life thoroughly miserable. I've gone on enough for one night, I'm now ready for my beauty sleep, as if. No plans for tomorrow, once again I'll just make it up as I go along. Al
It's right, whenever I say, " where would you like to go today ?" The answer is always the same, "You decide" . Then wherever I suggest it's no for whatever reason. I'm sure it's not only SoAlone and me that have this problem. Just before Christmas I took my wife to the Manchester Christmas markets, she always used to enjoy that. Not this time, there were no shops! It's easy to become trapped in our own little world, isolated and feeling so alone, but we're not alone. There are so many in the same position. But the feeling of isolation can sometimes be overwhelming, even in a crowded place. So, what do we do? We post on here, and for a while the feeling of isolation goes away. We share our thoughts and feelings and for a time we realise we're all the same, same problems, same worries, same fears. Good grief, at this rate I'll be joining the ramblerscertainly done some rambling tonight Anyway, I haven't posted on here for a few days. Thats because I didn't feel the need. The easter weekend was very quiet, don't get me wrong, it's had its share of moments but nothing serious. My wife has been very quiet, unnaturally so, mustn't complain. Although I do find it unnerving. I find myself walking on eggshells, it only takes a second to change things. One wrong question and that's it, she's off again. Then that's another day ruined. Not too long ago, if something or someone, I. e. me, upset her, then any bad temper would subside after a few minutes. Not now. Once she starts now it sets in for the day. And it can make life thoroughly miserable. I've gone on enough for one night, I'm now ready for my beauty sleep, as if. No plans for tomorrow, once again I'll just make it up as I go along. Al
Dear Al60, sorry you are finding life so hard, Dementia is the hardest thing ever I feel. I did find that my husband could no longer cope with choices quite early on in the progression of this horrible illness. Life for both of us became easier when I stopped offering choices and simply said this is what we are doing, please will you come too, it will be fun, we'll see so and so, whatever, and no longer tried to make him make decisions and choices. Asking questions I mostly stopped too, other than to say are you ok, isn't this lovely, did you enjoy that, wasn't it good to see ... Don't know if it's worth trying for you.
Gosh al, your wife certainly is having a load of frontal lobe issues!
We are having quite a few here too - Im very preoccupied with funeral arrangements and dont have time for OH, which is disrupting his routine and not making him very happy. I think Im knee deep in egg shells!
I do the same as jennyc and spamar - dont ask questions as they really set him off because he doesnt know the answer. Recently we went to an adult colouring group and when faced with a geomeric design he couldnt decide what colour pencil to use I know that in a marriage we try to negotiate plans and commitments and then come to an agreement, but when dementia comes along everything changes. The relationship becomes like that of an adult in charge of a small child. Its hard and every now and then I get seduced into trying to respond in the old way, but it never works. We are all doing out best and just muddling through. What else can we do?
We are having quite a few here too - Im very preoccupied with funeral arrangements and dont have time for OH, which is disrupting his routine and not making him very happy. I think Im knee deep in egg shells!
I do the same as jennyc and spamar - dont ask questions as they really set him off because he doesnt know the answer. Recently we went to an adult colouring group and when faced with a geomeric design he couldnt decide what colour pencil to use
I know that in a marriage we try to negotiate plans and commitments and then come to an agreement, but when dementia comes along everything changes. The relationship becomes like that of an adult in charge of a small child. Its hard and every now and then I get seduced into trying to respond in the old way, but it never works. We are all doing out best and just muddling through. What else can we do?
Hi:
At times, peace and quiet are welcome however more often than not silence is unbearable. Thank goodness for the radio & music. Even an argument is better than nothing.
Hi again. Right, now is me time. My wife has gone to bed, the contents of the greenhouse have been watered, the washing has been brought in and is now neatly folded and all the eggshells of the day are all brushed up and are now in the bin. Me time. It sounds selfish doesn't it. But it's necessary for my own sanity. The admiral nurse visited today. When I reminded my wife of the impending visit, she went off into one of her rages, I don't like to use the word, tantrum, but that's all it was. I can usually cope with them and today's was no exception, but I think some of the other customers in the local co-op were a little surprised. Sadly these mood swings are becoming more and more frequent and lasting longer and it can be the most simple thing that sets them off. I sometimes think that I should really embrace these times, things are only going to get worse, no matter how infuriating things are at the moment these might be the better times. Anyway, after all that, the nurse arrived on time, my wife answered the door and instantly became a different person. Nice as pie, how does that work? She goes on and on about how we don't need another visit from another nurse then when she arrived it was like she was opening the door to a long lost friend. That leads another question, if she can instantly switch to ,nice, why can't she do it for me. Perhaps I bring out the worst in her. Last Monday, just on the spur of the moment, I suggested a trip to chester. I also thought it would be a change to go by train. Even though it was standing room only and the shops were a bit of a walk from the station she thoroughly enjoyed the afternoon. We found the shop she wanted, bought the bag she'd seen on line, stopped off for a cold drink then came home. She really enjoyed it, she arrived home in a good mood, which stayed with her for the rest of the day. When she feels good, I feel good too. Tomorrow I'm taking her to one of those antique places. She loves browsing through all the items. I suppose some of the things there might spark some memories, I'd like to think so anyway. I'll tell her tomorrow where we're going, that way she'll agree to going. I'm hoping for another day like last Monday. I've read the recent replies and am trying to follow the advice given. I guess I'm just finding the transition to becoming the leader quite hard. After a lifetime of mostly taking a back seat, I said mostly, I'm now taking charge. I have to. I know my wife is also struggling to cope with trusting me to take charge, it isn't easy for her. But we are getting there.
Canary, you mention frontal lobe issues in your reply. I know that there are many types of dementia, in fact as the symptoms gradually became more obvious and impossible to ignore, I started to do what anyone would do and consult Dr google. Obviously I've got no medical background but I did have one advantage. I'd known her for forty plus years. The conclusion I kept coming back to was ftd , every time. On the day of the visit to the clinic the Dr did tell us that the result of the scan showed a problem in the frontal lobes. When I asked him to write down the diagnosis , he just wrote, vascular dementia? He said he'd added the question mark as they could never be sure. Now, to me, dementia is dementia,
I've stopped consulting Dr google some time ago, he had no new answers. The best advice has been found here, on TP. So I'll carry on posting, it's therapy in itself. It's also good to know I'm not on my own although I also wish there was no need for TP as there was no such thing as dementia, imagine that.Al
Canary, you mention frontal lobe issues in your reply. I know that there are many types of dementia, in fact as the symptoms gradually became more obvious and impossible to ignore, I started to do what anyone would do and consult Dr google. Obviously I've got no medical background but I did have one advantage. I'd known her for forty plus years. The conclusion I kept coming back to was ftd , every time. On the day of the visit to the clinic the Dr did tell us that the result of the scan showed a problem in the frontal lobes. When I asked him to write down the diagnosis , he just wrote, vascular dementia? He said he'd added the question mark as they could never be sure. Now, to me, dementia is dementia,
I've stopped consulting Dr google some time ago, he had no new answers. The best advice has been found here, on TP. So I'll carry on posting, it's therapy in itself. It's also good to know I'm not on my own although I also wish there was no need for TP as there was no such thing as dementia, imagine that.Al
Enjoy your "me time" - you deserve it.
Your planned trip to an antiques emporium sounds like a great idea - I hope you manage to create another "good" day for your wife and, by inference, for you too. Hard work isn't it, all this?!
Well done x
Your planned trip to an antiques emporium sounds like a great idea - I hope you manage to create another "good" day for your wife and, by inference, for you too. Hard work isn't it, all this?!
Well done x
Thank you. Tomorrow will either be a good day or a bad day, there doesn't seem to be an in-between day any more. But however it turns out, I'll be back here. Either to download or to share the good things. Hard work, you're not kidding. I left school a long time ago, I've been in employment ever since, now I've finished work, I've found myself with the hardest job ever. Best sign off now, it's past my bedtime thanks again, Al.
I wonder Al if your wife could take to day care, there was some lovely conversations at the one I went to yesterday and was set up to paint a picture in the tv room...everyone saying what ide done was marvellous. They were being kind cos it was rubbish but I've never met such caring people. And I've come across a few as a W.Y.M.A.S. ambulance driver/ attender. It could take the sting out of caring for her by yourself some attend 4 or 5 days a week but at least if she did one it would help.
Glad you are having some me time
I havent had time to sweep up the egg-shells here
One of the best pieces of advice that I have come across for FTD is never to say the word "no" - even when you are actually saying no. Start the sentence with "yes" then say what you need to say. Deflect, distract and defer. So, instead of saying "no, you cant sit down now" (for instance) you say "yes, we can sit down in a minute". I find that saying "no" or "why?" is like a red rag to a bull. Its also quite difficult to stop, and saying "yes" all the time (when you are actually saying no) feels very stilted - but it does work.
BTW, the sudden change when the nurse appears is typical of all dementia and is know on here as "hostess mode". My OH does that too - he can pin on a mask and fool so many people, but it takes a great deal of effort, he cant maintain it for long (3 hours max) and it leaves him exhausted afterwards.
I hope you have a good day (or part of a day ) and remember that if the rage stage becomes too bad you can get medication to calm it down, so it might be worthwhile talking to her GP about what is going on.
I havent had time to sweep up the egg-shells here
If your doctor is saying that the scan shows problems in the frontal lobes then its not surprising that you are getting the symptoms of FTD. Dementia is a slippery beast though and can be difficult to get hold of - especially FTD where there are no tests to positively confirm it. You can never be absolutely sure that it is FTD until the post mortum. I dont think that the doctor is querying dementia - Im guessing that he is querying whether its vascular dementia. Anyway, the symptoms will be the same, so Id treat it like FTD.
One of the best pieces of advice that I have come across for FTD is never to say the word "no" - even when you are actually saying no. Start the sentence with "yes" then say what you need to say. Deflect, distract and defer. So, instead of saying "no, you cant sit down now" (for instance) you say "yes, we can sit down in a minute". I find that saying "no" or "why?" is like a red rag to a bull. Its also quite difficult to stop, and saying "yes" all the time (when you are actually saying no) feels very stilted - but it does work.
BTW, the sudden change when the nurse appears is typical of all dementia and is know on here as "hostess mode". My OH does that too - he can pin on a mask and fool so many people, but it takes a great deal of effort, he cant maintain it for long (3 hours max) and it leaves him exhausted afterwards.
I hope you have a good day (or part of a day
) and remember that if the rage stage becomes too bad you can get medication to calm it down, so it might be worthwhile talking to her GP about what is going on.Once again, hi. I know it's late but sometimes, no, most times this is the best time to post. Today was a good day after all. Into the third time wandering through the antiques emporiem looking at the same things and each time reacting as if it was the first time she'd seen them, I thought it was time to intervene and say it's time to leave. She loved it. I think that feeling stayed with her for the rest of the day. Like I said yesterday, if she's happy then so am I. Quakeroat, you mention day care. She has been offered similar things in our area, she doesn't want to know. I feel as though we have crossed many bridges over the last couple of years but she's somewhat stubborn to cross that one. All I hear is , no, we don't want anything to do with anything like that, we're fine as we are. So, one day maybe, she'll agree. I still don't know how she'll react to the sitter, no doubt when the time comes shell be fine. Each time anything resembling change comes along her stress levels go through the roof with mine not far behind. But we've got this far so here's hoping . Canary, your advice is spot on. What you say about distraction methods and not using the word no, makes perfect sense, these are the methods I've been using without realising. Once again, today has been enjoyable, I certainly wish every day was like this one. Tomorrow does have potential. Dr appointment in the morning, then she's off to lunch with friends, yes, respite. Last time this happened in wasted my free time on cleaning the bathroom. Tomorrow the bathroom can wait. Right, that's it, time to go. Try to plan something for tomorrow afternoon, I probably won't know what to do with myself. Goodnight, Al
