Two years to get this bad

[canary]

You need a big stick to knock that guilt monster off your shoulder and stop it whispering in your ear.
Your wife will have had a lovely day out and kept up her friendship, her friends are happy to do this and (as a bonus) you get a bit of respite. Sounds like a win - win situation to me
Grab every offer of help that you get with both hands.

 

[AL60]

Hello once again. Believe me, I do take the opportunity whenever it comes along, and I too see it as a win win, but I'll always feel as though I'm taking advantage, it's in my nature. But don't worry, I'll always accept the offers of help whenever they come along. I have to for my own health. Today has had its moments,, and there are a few hours left yet. I never thought changing a bed could leave me feeling so ? !! I can't think of the words, speechless will have to do. The problem is, my wife is at a stage where she knows what she wants to do, but is incapable, while at the same time she also thinks she's fine. So when I say, "don't worry, I'll do that or this or whatever, she find it extremely hard to admit she just can't do things like she used to. I'm finding it difficult to put into words, but I probably don't have to. Many of you have seen it, done it and have more than likely got through several of the tee shirts. Of the useful things I've done over the last couple of weeks, the most significant was leaving my job . This will allow me time to prepare to become a full time carer. Although I'm still hoping for a miracle. The other thing I did, was sign in to this forum, why I waited so long I'll never know, as I said once before , I'm probably in a little bit of denial too. There is so much information, help, strangers prepared to listen and most of all, kind words. It does make a world of difference to know we're not alone. I'll sign off for now, Al.

 

[AL60]

Hi again. It's been nearly two weeks since my last post and although things are progressing, it seems as if no one wants to mention the 'D' word. I do understand that it's difficult to diagnose but I get the feeling we're just going to drift into it, a kind of process of elimination. My wife had the spect scan fairly recently, the results are in but all we are told is they are inconclusive. As a consequence, next week she will be going back for a pet scan, its not been easy, believe me, she's taken some persuading. I know that she's afraid of the procedure but even more afraid of what the results might reveal. Who wouldn't be. I can't fault the team at the clinic. My wife cant understand what all the fuss is about, every week now we have a nurse to visit, one of the health workers so on hand should I need any help or advice, and referral to an admiral nurse, really, I do think we are getting the best of care. The way things have been going these last months , I've now resigned myself to accept a dementia diagnosis. As I said earlier, I think we'll just drift into it, or rather fall into it. Anyway, we're not beaten yet, I've done with work now so I'm going to make the best of things while we can and enjoy the good days and even try to enjoy the not so good ones, easier said than done. Trust me, we can do it. Thats it for now Al.

 

[canary]

Sometimes it can take a while for dementia to be diagnosed - it took 3 years for my OH to be diagnosed with FTD, so please dont get despondent at the moment, although I can understand why. I think the pre-diagnosis stage is pretty hard as you know there is something wrong, but dont feel you have any validation.

 

[lemonjuice]

Reading your posts makes me wonder when the medical profession are really going to 'wake up' to the fact that 'memory problems' are not the major factor in indicating Dementia. It is so much more than a 'memory problems'. Certainly with the sufferers in my family 'odd behaviour' patterns were much more a marker and in one of my aunt's case her early loss of her sense of smell.

To be fair most people in the past never lived long enough to develop it and few GP Drs have much experience.

I'm also convinced that something about our modern lifestyle is making the problem more common - hence the 'Dementia avalanche' which we are witnessing.

I noticed too after her spell in hospital how my mother's condition deteriorated- she couldn't even tell the Dr her name. I often look back and wonder if they'd not tried to 'save and treat her' what would have happened. She'd been in a coma and very peaceful and I'd resigned myself to losing her before the 'worst' hit. (We'd watched other relatives get to severe stage and had no illusions about just how bad it could get.) Watching her deteriorate over the next 5 years has broken my heart so many times.

 

[AL60]

Hi again. I wasn't going to post for a few more days yet,, but as once again, lying here at 4am, unable to get back to sleep, I might as well do something. So, here we are, all kinds of things on my mind. As I'm becoming more and more awake the the words I intended to write seem harder to find. Twenty minutes ago, just after waking the words were all there, composed in perfect order, now all melted away, as if like after a dream, forgotten. . Now,as I put finger to pad I'm lost for words. Not unlike many times during recent days and weeks I find myself lost for words. I'm smiling to myself about an event yesterday. I was tidying some of the ivy plant on our side of next doors garage wall, it does tend to grow rather fast. But as I'm cutting it from the top, my oh is 'helping' by cutting and tidying much lower down the wall. I suspect that the ivy won't be too much of a problem for much longer. Her friends wisteria suffered the same fate some months ago. But this is one more of the problems. No matter how many times I try to explain things, she can't seem to understand, if I tell her she's doing something wrong, then I'd better watch out. If I say, just leave it, I'll do it, that too is wrong. The best way I've discovered is just to let her get on with it. If it means I have to do something over again, so be it. Frustrating, yes but easier in the long run. Its not as though i dont have the time. As long as she's not doing anything to endanger herself, just let her carry on. On a plus note, I've ever liked the ivy anyway. Well, that passed some time away. Not only have I managed to write this post, I've got some of the things off my mind, injected a tiny amount of humour into what can be a depressing subject and at the same time prepared myself for another couple of hours of sleep. So, not all bad then. I'll keep up with this posting therapy again later. Al.

 

[AlsoConfused]

Hi Al

Your OH will be so pleased about making a contribution to the proper functioning of the household - just as if she wasn't ill!!!! - the future state of the ivy seems a small price to pay.

I didn't mind (really) butter a quarter inch thick being put on the slices of bread we were to eat for tea; or having to discreetly reset the cutlery put out for meals; but I wasn't happy about the duvet covers being cut in order to more easily accommodate the duvets!

 

[AL60]

Hi once again. Duvet covers. Now, they do cause her major problems. She hasn't cut any up yet, but I'm sure if left to her own devices she would consider it. Last time she insisted she could change the cover herself, so I took a step back and let her try. She layed it on top of the quilt, undid the buttons, smoothed it over then buttoned it up, then looked at me and said, "There, what's wrong with that ?". As soon as she'd gone downstairs I put it right. Two days ago she got clean bedding from the cupboard and instead of putting it on the bed put it straight into the washing machine. Once again, twice the work. Things like that used to really worry me but now these type of events just don't surprise me anymore. If things could stay like this for years I'm sure I could cope. But it's the thoughts of what's to come that keep me awake at night. I'm not worried about myself, there's help on offer from family and friends and also help from the nurse team at the clinic. No, my worry is how my wife is feeling, she never let's her thoughts and feelings be known to me, it's hard to believe she can't see what's happening. And yet she carries on in her own way as best she can, oblivious to the chaos left in her wake. . The thing that's been concerning me lately is her weight loss. It's not as though she's lost weight recently, its been two year process, but to me it seems to be accelerating. Always excuses, I'm worried about my tooth, dentist fitted new crown today, it doesn't feel right, I can't possibly eat this it's too hot, this isn't right it's too cold. Always excuses. But she will eat cake and sweet things. I used to try to discourage her but now I just think , why worry, what harm can it do, at least shes eating something. There's enough stress without arguing over mealtime eating habits. Well, I guess that's it for another day. Let's see what tomorrow brings. Al

 

[Cherryade]

I am trying to do my best for my friend who has early onset dementia. It took over two years for her to be diagnosed. Now it seems as she is losing abilities every day. She is now on aricept. Has been for the past few weeks. Already she is at the stage where she can wash and dress herself but little else. I worry for her future. She lives alone which makes it all so much worse and more difficult. There is only so much that friends can do. Eating is a whole minefield. She will only eat about three things. I've given up trying to get her to eat meals of any description. So I know what you mean about eating.

 

[AL60]

Hi again. This disease really is the scourge of our time. Is it because we are all, supposedly living longer? Try explaining that to the family or friends of an early onset sufferer. Seven years short of state pension age, worked all her life. Yes it can make you bitter, but what can you do. As we get older it gets harder and harder to dodge the mines in the minefield of life. I shouldn't really complain, there are tens of thousands who would change places with me even now. Sorry, I think the darker evenings are getting to me. Today hasn't been too bad really. Went out with friends this afternoon in the rather fresh autumn air. The fresh air must have done some good, she almost cleared her plate at tea time. Now she's quite content going through her facebook lists, and even made a start unblocking the 4670 names, including the names of some friends and family. It's OK, they understand. It might be better though if she just unblocked friends and family instead of all 4670. She may be some time. My wife isn't yet on any medication. She has been asked if she would take something if need be. No, what do I need to take anything for, when there's nothing wrong ! Its been a constant battle. First, getting her to go to the Dr's, then the ct scan then the spect scan and now the pet scan. She has finally agreed to the pet scan but only if the nurse comes with us. The pet scan is booked for next Thursday afternoon, I'm not particularly looking forward to it, I remember how it made me feel last time I can't explain why it upset me the way it did, but at least well have the nurse with us this time for support. With all the tests and examinations you would think a diagnosis would be close, but it seems to get further away as time goes on. At least we're getting the help and support we need. Must go now, will post again soon. Al.

 

[canary]

Hang on in there Al
x

 

[AL60]

Hi again. About a year ago I started visiting the occupational health dept where I worked. They tried to reassure me that it was probably just stress and anxiety, after several more visits, the nurse was very helpful and lent me a book on dementia. The book was fairly old, early 1990's , but the information provided differed very little from information freely available on the Internet, now, 25 years later. I know many millions of pounds must have been spent on research during this time, but are we really any wiser or nearer to a cure.. No wonder there are so many waiting for diagnosis of this awful disease. Tomorrow afternoon I'll be taking my wife for that pet scan. It says amyloid count on the letter. This must have been playing on my wife's mind as she asked the nurse today, if they find anything, what can they do to reduce it? One word, heartbreaking. All the nurse could tell her was , have the scan, get the results and then we'll see. It's going to be a long six to eight weeks to get the results this time. So we're going all out to make this Christmas good one. Must go now. I'll post again soon. Just one more thing. In a way I used to look forward to those occ health visits, they were a good way of relieving some stress, downloading on to someone prepared to listen. This forum does just that, thank you for listening. Al.

 

[AL60]

Hi again. It's been a couple of weeks since I last posted. My wife had just had her pet scan and we were told to expect a six to eight weeks wait for results. I did think that the wait would be unbearable, I must say, it wasn't, I say, wasn't. Last Tuesday we received a call from the clinic, the results are in, they have an answer, and now the wait until next week really is unbearable. Stress levels are noticeably up on past weeks. I think because we knew we were due a long wait we both must have just stopped thinking and worrying about things, sort of no news is good news, kind of thing. My wife is definitely being affected by the stress of waiting. Today is Saturday and the number of times she's checked the clock and the calendar you would not believe. When I came downstairs this morning she was sitting quietly, coat on and ready to go for the appointment. So, that's it up to now. Even now I'm hoping for good news next week, never give up. And if they do tell us the worst, we'll just get on with things as best we can. At least well know. I'll be back as soon as I know anything Roll on Tuesday . Thank you.

 

[Spamar]

Hi, Al. Yes u do realise that the only sure way to diagnose dementia is after death? It's mostly an elimination process. If nothing is found, it will be diagnosed as Alzheimer's. All dementias are progressive and so far, there is no cure. Donepezil will, if tolerated, slow down the progress of Alzheimers.

Your wife, doing all these peculiar things, truly believes that what she is doing is right, no one will convince her otherwise! There is piece here on compassionate communication here which is worth a read.

Btw, many pwd don't like the diagnosis mentioned. My OH was different, he didn't mind in the beginning, even gave talks about it. But a few years in, he reverted to 'memory problems'!

Good luck!

 

[AL60]

Hi. Thank you Spamar for your reply. Yes, I am aware that diagnosis can only come through as an elimination process, only confirmed after death. But the only way I feel we can go forward and face things full on is with a formal diagnosis. We have been told this will open doors to help both physical and financial. Without the formal diagnosis we are stuck in limbo. At least that's how it feels. So on Tuesday morning I'm hoping for an answer . I know what you mean when you say many sufferer's don't like to talk about it, my wife very occasionally will mention it to the nurse or doctor but rarely to me. I often think I'm doing the worrying for both of us as she seems oblivious to what's going on and is quite happy in her own way. And then she'll say or do something and then I realise once again she worries about lot more than she let's on.I'll sign off again now and enjoy the peace and quiet of the evening, yes once again she's retired early for the night thank you again. Al

 

[AL60]

Hi again. I think this will be my last post under this thread. Today we went to the clinic to discuss the scan results. Vascular dementia? I've added the question mark as that is how it will appear on future sick notes, sorry, fit notes as they're called now. As has been said before it's almost impossible to get a definite diagnosis so well have to make do with, Vascular D? So, what now ? Although the answer was what I expected it's no less upsetting. What makes it worse is the fact that my oh doesn't really grasp how serious it is, she was actually pleased it wasn't alzheimers! I'll sign off for now and see what tomorrow brings. My next task will be to persuade her to take the medication, she can be difficult sometimes. Al.

 

[AL60]

Hi. I did say that this would be my last post under this thread. I have moved on since her diagnosis. I first started posting under this particular thread as it seemed to fit . Seeking a diagnosis . We now have that diagnosis. Well, a couple of weeks on and nothing has changed. The only thing that's changed is we now know the type of dementia she has to cope with. But really nothing has changed, except things haven't got any better either. This disease is bad, it affects the sufferer, the family of the sufferer and the friends of the sufferer, OK, yes , many other things do that too, cancer for instance, but cancer has survivors, dementia does not. Sorry, but I'm a little down tonight, I'm not always this low. I promise tomorrow will be better, it usually is. Al.

 

[1mindy]

Hi All.I have read your thread before and have been following it. You have every right to feel down. I like you gave up work for my husband,he was ringing me at work worrying about things ,about 15 times a day. I had no choices. I am 58, he's self funding in a home, I'm way off pension age, this awful disease as you say takes no prisoners. Just make sure you have time for you. I seriously neglected myself as all my time and energy was taken by my caring for which I was ill equipped. Make sure you take advantage of all the help available to you both now. Difficult I know with someone in denial. Best Wishes.

 

[AL60]

Hi again, just a quick reply before sleep gets the better of me. Thanks again for the reply, it really does help. I really am hanging on, sometimes only by my fingertips but nevertheless coping. Usually at this end of the day I can look back at the events of the day and think, well , that wasn't too bad really, it could've gone a lot worse. Must be the optimist in me. Thanks again, Al.