Two years to get this bad. What now?

[AL60]

Hi Al

Keep up the good work mate. Though your posts are often harrowing, I am always impressed by your dogged sense of humour.

Very few people realise the depths of despair we go through on a daily basis (except, of course, TP forum users). Many of us caring for our loved ones or family members are in permanent hostess mode to the outside world.

Kind regards
Phil

Hi. Thanks for the reply. I do try to inject a little bit of humour into my posts, I guess it's a kind of coping strategy. I'm the same in other aspects of my life. The downside is people not really seeing the real me. They don't see the turmoil on the inside. Don't get me wrong, in many ways I prefer it that way, people tend to leave you be if they can see you're getting on OK. As for the hostess mode, I know exactly what you mean. However cracks are starting to appear, she is beginning to lose the ability to switch it on. Oh well, thanks again, Dr's tomorrow morning, let's see how much we can cram in to our allotted ten minutes, I'm bound to miss something out, always do. Perhaps I should make a list, now all I need is a pen, bah! I'll do it tomorrow morning. Al

 

[JohnBG]

Well done Al.

You are doing a great job I know, my step mother has dementia for two and half years her decline has been steady at times more pronounced at others.

What support do you get ny own sleep quality has declined, even though my step mother has been in a care hone that can now not longer keep her safe, so a move in on the cards to an EMD unit, although she fell out of bed, broke her hip on the day, so never dull here.


Post what you want just let it out, it will be good for you I could also do with a good smile well overdue.

Good luck Al, get the help you need now !

John.

 

[AL60]

You are doing a great job I know, my step mother has dementia for two and half years her decline has been steady at times more pronounced at others.

What support do you get ny own sleep quality has declined, even though my step mother has been in a care hone that can now not longer keep her safe, so a move in on the cards to an EMD unit, although she fell out of bed, broke her hip on the day, so never dull here.


Post what you want just let it out, it will be good for you I could also do with a good smile well overdue.

Good luck Al, get the help you need now !

John.

Hi. I don't feel as though I'm doing a great job, there are times I really feel as though I'm making a real mess of things but then, I read other posts and realise I'm not on my own, we're all doing our best. You ask what support we receive, plenty of advice but nothing practical. 24/7 one on one, granted, nighttime is my time, a time to reflect on the days events, a time to unwind, although sometimes it feels like unwinding or untangling one of those slinky spring things that you send down the stairs sleep quality is good, although I do tend to stay up much later than I ever did before. Consequently I'm usually dead on my feet and am asleep not long after lights out. Alas morning comes around all to soon then as usual the dawn chorus of constant toilet flushing wakes me nice and early. I shall never again put one of those coloured toilet blocks in the cistern, every morning flush, flush, flushetty flush trying to get the water to run clear. Oh well, that's another stressful day over. Looking back, I think the thing stressing me at the moment has got to be trying to get her to eat . Last night she was sick, this morning she was sick. She hadn't eaten anything to cause sickness. Saw the dr this morning, she's prescribed energy type milk shakes, similar to complan. In the surgery my wife is all for it, I'll try anything, she says, I know she won't use them. She should use them, if anything her weight loss is accelerating, 8kg since January. She can't afford to lose anymore. Anyway, I've rambled on long enough, I only meant to write a couple of lines. So I'd best go now as it's only six or seven hours to the first flush of the day. Al.

 

[Philbo]

Hi Al

I know what you mean about the coloured toilet blocks.

A few months back, I discovered that my wife and apparently used the tall wicker clothes basket in our bathroom (we have a separate toilet) to have a wee.

I couldn't understand why she'd suddenly done this so I started looking for anything that had changed.

You've guessed it - I had just started trying the coloured toilet blocks and I can only conclude that the sight of the blue water in the bowl had confused her?

I spent a silly amount of time trying to get rid of the half-dissolved block and flushing all traces out of the cistern. Plus had to dispose of the clothes basket.

Touch wood, she has not done anything similar since - phew!

 

[AL60]

Hi Al

I know what you mean about the coloured toilet blocks.

A few months back, I discovered that my wife and apparently used the tall wicker clothes basket in our bathroom (we have a separate toilet) to have a wee.

I couldn't understand why she'd suddenly done this so I started looking for anything that had changed.

You've guessed it - I had just started trying the coloured toilet blocks and I can only conclude that the sight of the blue water in the bowl had confused her?

I spent a silly amount of time trying to get rid of the half-dissolved block and flushing all traces out of the cistern. Plus had to dispose of the clothes basket.

Touch wood, she has not done anything similar since - phew!

Hi. I must admit I've not had that problem to contend with. But for some time now I've seen her going out to the bin clutching wads of toilet paper. I had wondered why and what for. It's taken a while but now I have the answer. She doesn't want to put the paper into the toilet in case it blocks It! No matter how many times I've told her it's OK to flush she carries on doing it. The trouble is, because it's paper it gets put into the recycling bin. As a consequence it's down to me to go to the bin and sift through to retrieve it, it's OK, I wear a glove. I get all the best jobsAl.

 

[Casbow]

Oh Al60 you are a star. The things we have to do. This is a new one though. Do you think a small lined bin next to the toilet would encourage her to put the paper in there. It would be easier for you.xx

 

[AL60]

Oh Al60 you are a star. The things we have to do. This is a new one though. Do you think a small lined bin next to the toilet would encourage her to put the paper in there. It would be easier for you.xx

Hi. Already on to it, we have a 50% success rate but it's an improvement. It's all about these little trials and tests, always trying to make things easier and less stressful for all. I always have to put the liner in though, she sometimes tries to help but the bags on a roll confuse her. More than once she's cut the bottom of the bag in an attempt to get it open. Not useful when I come to empty it. Al.

 

[AL60]

Hi again. I've heard many times, dementia, described as a journey. It's a good description. Some long straight bits, some tight corners and countless bends to be driven around, especially as a carer. Earlier this evening I was thinking back to this time last year. How, relatively normal things were. Yet I knew in my heart something was seriously amiss. But, this time last year the experts we're saying don't worry, we've seen this before, it's extreme anxiety, we can fix that. I knew it wasn't and I knew they couldn't. I was no expert on matters of the mind but I knew my wife better than any of those experts. Sadly, in November last year she finally got a diagnosis. Vascular dementia with a ? Because they couldn't be 100% certain. Now looking back, it feels like five years ago not one. We've come a long way on this journey in a relatively short time. Although things are quite bad now, what will another year Bring? It doesn't bear thinking about. Perhaps I'll look back at this time, now with affection and think , hey that wasn't too bad. Why am I thinking these Things? Why am I writing these thoughts here. None of us know what will happen tomorrow, never mind next year! We all like to make some kind of plan for the future, with dementia that's impossible. I had, sorry, we had big plans for our retirement year's, now we just make it up one day at a time. The last few days haven't been too bad. Our youngest daughter has been away for a few days, staying up in the lakes with her bigger sister. As soon as she arrived home this evening that was it. If you weren't to know you would be certain my wife and daughter were the worst of enemies. Not my daughters fault, her only mistake was to come home. Her mum really seems to pick on her for some reason and as for her choice of boyfriend!!! Poor lad. Really he's fine. He also understands and makes allowances. I think it's only a matter of time before she gets herself in bother while out. She seems to find it difficult to keep her thoughts and feelings to herself. I've seen her come close once or twice while we've been out, I've usually managed to distract her, like changing the subject, not easy when she's focused and so determined to put right what she sees as a wrong. So, what of the future, I'm not going to say, how much worse can it get, because I know it can get, will get much, much worse. My biggest worry is how I will cope, how much can I take. I mentioned planning for the future. One thing we have talked about, on her better days, is care in the home. How she's not wanting to go to a care home and I've agreed that she'll stay at home. Then in imaginary brackets, as long as she possibly can. Because as I said at couple of sentences earlier, how will I cope. Only time will tell so in the meantime I'll just carry on, living for the day and once again, see what tomorrow brings. Rain forecast, that should get me out of cleaning the windows, not that I need an excuse. We'll go out for the afternoon, see, planning ahead does work , I feel better already. But where shall we Go? , I'll think of somewhere.Al.ps, having just reviewed this post is think I'll join the ramblers,it does go on a bit.

 

[dancer12]

Hi again. I've heard many times, dementia, described as a journey. It's a good description. Some long straight bits, some tight corners and countless bends to be driven around, especially as a carer. Earlier this evening I was thinking back to this time last year. How, relatively normal things were. Yet I knew in my heart something was seriously amiss. But, this time last year the experts we're saying don't worry, we've seen this before, it's extreme anxiety, we can fix that. I knew it wasn't and I knew they couldn't. I was no expert on matters of the mind but I knew my wife better than any of those experts. Sadly, in November last year she finally got a diagnosis. Vascular dementia with a ? Because they couldn't be 100% certain. Now looking back, it feels like five years ago not one. We've come a long way on this journey in a relatively short time. Although things are quite bad now, what will another year Bring? It doesn't bear thinking about. Perhaps I'll look back at this time, now with affection and think , hey that wasn't too bad. Why am I thinking these Things? Why am I writing these thoughts here. None of us know what will happen tomorrow, never mind next year! We all like to make some kind of plan for the future, with dementia that's impossible. I had, sorry, we had big plans for our retirement year's, now we just make it up one day at a time. The last few days haven't been too bad. Our youngest daughter has been away for a few days, staying up in the lakes with her bigger sister. As soon as she arrived home this evening that was it. If you weren't to know you would be certain my wife and daughter were the worst of enemies. Not my daughters fault, her only mistake was to come home. Her mum really seems to pick on her for some reason and as for her choice of boyfriend!!! Poor lad. Really he's fine. He also understands and makes allowances. I think it's only a matter of time before she gets herself in bother while out. She seems to find it difficult to keep her thoughts and feelings to herself. I've seen her come close once or twice while we've been out, I've usually managed to distract her, like changing the subject, not easy when she's focused and so determined to put right what she sees as a wrong. So, what of the future, I'm not going to say, how much worse can it get, because I know it can get, will get much, much worse. My biggest worry is how I will cope, how much can I take. I mentioned planning for the future. One thing we have talked about, on her better days, is care in the home. How she's not wanting to go to a care home and I've agreed that she'll stay at home. Then in imaginary brackets, as long as she possibly can. Because as I said at couple of sentences earlier, how will I cope. Only time will tell so in the meantime I'll just carry on, living for the day and once again, see what tomorrow brings. Rain forecast, that should get me out of cleaning the windows, not that I need an excuse. We'll go out for the afternoon, see, planning ahead does work , I feel better already. But where shall we Go? , I'll think of somewhere.Al.ps, having just reviewed this post is think I'll join the ramblers,it does go on a bit.

Hi:

Yes that was quite long, but that's okay. Words are power to the soul. You sound so worn out, it appeared as though things were going to get better. It seems somebody else's worst of times are our best of times. I know what you mean dreams crushed and hearts broken. I had plans for our retirement as well and nowhere in my wildest imagination (and my imagination can be pretty wild at times) did I even think of this disease. It's not fair at all. Your daughter shouldn't have to deal with this, just like my youngest son shouldn't have to deal with it either. They are young, they should be wild & free. This is supposed to be the best time of their lives. I cry for both my husband and my son. I wonder if someone cries for me. This is getting quite long too. I better stop and have another glass of wine. Tomorrow is another day. Someone is coming to assess him tomorrow. I haven't told him or else he will put on his other face and the guy will think I'm the one who is crazy and arrange for me to go to adult daycare. That might not be such a bad idea. I could use the break. Glass of wine here I come.

 

[Lanie222]

Mum

Mum was diagnosed 2years ago
Due to abuse I brought her to live with me.
I have been a full time carer
But nothing prepared me for this....
I love my mum and I really want to cope
I have bipolar also.
I sometimes feel ashamed of how I feel and the need to my own space.
Mum feels I don't want her company and if I'm in my room
. Will come in many times to see I'm still here. Mum is sleeping a lot and I let her so I get some rest myself.
But I wonder should I wake her up
And not let her sleep so much
Confused can anyone help me with this

 

[dancer12]

Mum was diagnosed 2years ago
Due to abuse I brought her to live with me.
I have been a full time carer
But nothing prepared me for this....
I love my mum and I really want to cope
I have bipolar also.
I sometimes feel ashamed of how I feel and the need to my own space.
Mum feels I don't want her company and if I'm in my room
. Will come in many times to see I'm still here. Mum is sleeping a lot and I let her so I get some rest myself.
But I wonder should I wake her up
And not let her sleep so much
Confused can anyone help me with this

Hi Lanie222:

Welcome to TP. You'll find much valuable information here. Everyone is so kind, they are all willing to share their experiences & knowledge and it helps so much. Post as many times as you want & need to, you'll find it helps so much.

I'm not a professional but I'd say let your mum sleep, her body needs sleep and its just a way of adjusting. As long as she seems okay, I'd just let her sleep, it gives you a break too.

 

[Daffodil48]

Just starting out...

Hello All
I am new to this. My husband has been getting confused and forgetful over the last year and has had 3 nasty falls.
Once he was referred to the memory clinic by his lovely lady GP, things have happened pretty quickly. He had his assessment and a ct scan and will now see the consultant this week. I know he has Alz but he has no idea and is in denial.
Meals are already awkward as his cutlery management leaves a lot to be desired and he constantly asks what the next meal is going to be and if it will be nice.
Oh dear.
This is my first posting response and I guess it won't be my last.

 

[AL60]

Hello All
I am new to this. My husband has been getting confused and forgetful over the last year and has had 3 nasty falls.
Once he was referred to the memory clinic by his lovely lady GP, things have happened pretty quickly. He had his assessment and a ct scan and will now see the consultant this week. I know he has Alz but he has no idea and is in denial.
Meals are already awkward as his cutlery management leaves a lot to be desired and he constantly asks what the next meal is going to be and if it will be nice.
Oh dear.
This is my first posting response and I guess it won't be my last.

Hi. There are similarities in your post to my own experiences with my wife. The confusion, forgetting things, she also has a tendency to get lost in familiar places too. Then the memory clinic, scans and tests all add to the stress. Mealtimes are now more straightforward now as her likes have reduced to cheese and potatoes. Denial, apparently that's normal but even there, speaking for my wife, there has finally been an acceptance. Just last week at a Dr's appointment she asked if there was any reading material on the subject, that request certainly took me by surprise , the dr kindly gave her a book off the shelf. She's yet to read it but it's a start. I must finish now , the arrival of the monthly nurse visit is imminent. So, keep posting it's really helpful. Al.

 

[AL60]

Hi. I'm only here tonight for one reason. I can't sleep. It's not that I'm particularly worried about anything. Nothing new anyway. I'm just unable to sleep. The more I try the less I'm able. I think that last sentence sums it up nicely. The more I try, the less I'm able. That's how it feels anyway. I may have mentioned once or twice how I'm worried about my wife's diet. Well, tonight she's decided that she doesn't like cheese and potatoes anymore. I think I'm going to have to go back to basics, whatever that means but it sounds good. Keep it simple, small amounts. Small amounts of what? Rice pudding, soup, macaroni cheese? I really am running out of ideas. Has anyone else out there got this problem? We had a visit from the clinic nurse today, she asked my wife to make up a glass of Strawberry flavoured complan, great, several hours later the glass is in the sink, soaking in hot water, it's set like rock in the bottom of the glass. No way is she going to try that again. That's it I'm all out of ideas. I could just prepare simple meals and put them in front of her in the hope she will eat them but I have my doubts. It's almost as if she's in self destruct mode. Determined not to eat anything and if that wasn't bad enough, then going on to blame me for not feeding her! That's it, enough for one night, rant over. I'll continue with the battle tomorrow. Al.

 

[dancer12]

Hi. I'm only here tonight for one reason. I can't sleep. It's not that I'm particularly worried about anything. Nothing new anyway. I'm just unable to sleep. The more I try the less I'm able. I think that last sentence sums it up nicely. The more I try, the less I'm able. That's how it feels anyway. I may have mentioned once or twice how I'm worried about my wife's diet. Well, tonight she's decided that she doesn't like cheese and potatoes anymore. I think I'm going to have to go back to basics, whatever that means but it sounds good. Keep it simple, small amounts. Small amounts of what? Rice pudding, soup, macaroni cheese? I really am running out of ideas. Has anyone else out there got this problem? We had a visit from the clinic nurse today, she asked my wife to make up a glass of Strawberry flavoured complan, great, several hours later the glass is in the sink, soaking in hot water, it's set like rock in the bottom of the glass. No way is she going to try that again. That's it I'm all out of ideas. I could just prepare simple meals and put them in front of her in the hope she will eat them but I have my doubts. It's almost as if she's in self destruct mode. Determined not to eat anything and if that wasn't bad enough, then going on to blame me for not feeding her! That's it, enough for one night, rant over. I'll continue with the battle tomorrow. Al.

Hi:

Soup is the answer to your problems, maybe. Short story - when I visited my mother in retirement home I'd stay for lunch, she enjoyed the company and I'd get a free lunch. They had a department that prepared food for them. Anyway first course they always served was soup, cold, warm or hot. They'd say it prepared the body for the food that was to come. Just like when you buy a plant at a nursery, if you want it to grow you need to prepare soil, you don't just dig a hole and through it in and expect it to grow. Just like our bodies have to be prepared to eat Make a batch of chicken broth, you'll have enough for a week or so. Get packages of small noodles and have different type everyday maybe even alphabet soup with lots of small soft veggies. Let her help in preparations, if she can. She'll feel like she contributed. Gotta go, my lawnmower needs to be prepared for fixing.

 

[AL60]

Hi. Thank you for the soup idea. But soup is also on her list of dislikes. Honestly, it's almost impossible to find anything she will eat and enjoy, perhaps it says a lot for my culinary skills. We went out this afternoon, we went to a nice little tea garden in North Wales. She thoroughly enjoyed a cream tea, so that was better than nothing. It's also probably why she left the absolutely brilliant macaroni cheese I made for her tea. Just lately she's been off cake and tea, preferring to dunk a biscuit in cold milk instead, just isn't the same. So to see her enjoy that cream tea this afternoon was a bonus. It will take more than a few of those though to put the 30kg back. Earlier this week her dr suggested something like complan might be a good idea to try. I bought two packs. She's now opened each sachet and refused to use it, because the powder is white, not pink like it is on the box. No good explaining to her that it will turn pink when it's stirred into the milk. She already did that yesterday, she has tried it and left it to set. Anyway, we had to buy some more today, some that was pink. We now have about ten open sachets and one glass of something pink which will never be used. Ok, I think that's enough of my problems for one night. I really think it's time to invest in a new lawnmower Dancer, oh well, time to go, another day starting eight hours from now, I'd best get some beauty sleep. ha, too late for that. Al

 

[dancer12]

Hi. Thank you for the soup idea. But soup is also on her list of dislikes. Honestly, it's almost impossible to find anything she will eat and enjoy, perhaps it says a lot for my culinary skills. We went out this afternoon, we went to a nice little tea garden in North Wales. She thoroughly enjoyed a cream tea, so that was better than nothing. It's also probably why she left the absolutely brilliant macaroni cheese I made for her tea. Just lately she's been off cake and tea, preferring to dunk a biscuit in cold milk instead, just isn't the same. So to see her enjoy that cream tea this afternoon was a bonus. It will take more than a few of those though to put the 30kg back. Earlier this week her dr suggested something like complan might be a good idea to try. I bought two packs. She's now opened each sachet and refused to use it, because the powder is white, not pink like it is on the box. No good explaining to her that it will turn pink when it's stirred into the milk. She already did that yesterday, she has tried it and left it to set. Anyway, we had to buy some more today, some that was pink. We now have about ten open sachets and one glass of something pink which will never be used. Ok, I think that's enough of my problems for one night. I really think it's time to invest in a new lawnmower Dancer, oh well, time to go, another day starting eight hours from now, I'd best get some beauty sleep. ha, too late for that. Al

I don't understand, I fixed the lawnmower- it works perfect again. Now he's mad at me, after not speaking to me for half a day he told me he was mad because I fixed it and he didn't. I can't win for trying. Does he want it fixed or doesn't he. You men have a language all your own. As for your wife she's trying to tell you, I need to eat, make me eat. make me believe you want me to eat. Maybe I'm wrong. We have this drink already pre mixed so you don't have to do anything just open the bottle. It actually tastes pretty good like a milkshake.

 

[AL60]

H Dancer..i. I can almost, no not almost I can actually feel the frustration in your post. I can feel it all the more because I've had one of those days too. Went for a haircut today, you know that last bastion of male bonding, as they do their best to make you look and feel better . She came with me. One last thing I could enjoy, banter with the barber, a bit more off the top and all that. Eavesdropping on our conversation, hearing things I hadn't actually said, chipping in with the odd comment like , liar. Anyway, that brought lunchtime. Decided to go to that other hangout for the afternoon. The sheda true safe haven. Now I've tidied it is can actually get in it. I think I'll be spending more time in there. Best go, pour yourself a glass of your favourite wine and try to relax, easier said than done in know but that's what I might do a bit later on. Al

 

[dancer12]

H Dancer..i. I can almost, no not almost I can actually feel the frustration in your post. I can feel it all the more because I've had one of those days too. Went for a haircut today, you know that last bastion of male bonding, as they do their best to make you look and feel better . She came with me. One last thing I could enjoy, banter with the barber, a bit more off the top and all that. Eavesdropping on our conversation, hearing things I hadn't actually said, chipping in with the odd comment like , liar. Anyway, that brought lunchtime. Decided to go to that other hangout for the afternoon. The sheda true safe haven. Now I've tidied it is can actually get in it. I think I'll be spending more time in there. Best go, pour yourself a glass of your favourite wine and try to relax, easier said than done in know but that's what I might do a bit later on. Al

Hi:

I'll need to buy wine by the truckload.

 

[AL60]

Hi. Only one truckload? Think I'll buy a vineyard. Today has been nonstop madness . It's quite early but I've gone to bed to escape. As a kind of parting shot to end the day, she asked who has put the bookshelf, piled up with countless children's books at the top of the stairs? As my youngest daughter came out of her room to see what the commotion was all about, she reminded her mum that they have been there for at least 21 years. Well they aren't there any more. They're now quite safe in mum's room. I know her decline has been quite rapid but there does seem to have been a dramatic further downturn literally over the last 48 hours. Maybe it's just a blip. Perhaps tomorrow will be back to normal. Whatever counts as normal anyway. It's been quite a day so I'll sign off for now, reserve my strength for tomorrow. Al.