Two years to get this bad. What now?

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. Once again, staring at a blank screen, wondering where to start. I must start with a thank you to Canary for her reply, it really does make a difference to how I feel. It's strange how everyone has a different experience of coping with caring for a loved one with dementia. All different yet so many similarities, I sometimes have to look twice at other people's posts and think, did I post that. One thing I do know is that things have got a little worse this week. At first I thought it was my imagination, tiredness plays it's part there, but, no, the continuing questions and the confusion. The boiler man is due tomorrow afternoon, my wife is concerned he won't be able to get to the tree at the bottom of the garden. The tree surgeon isn't due until February. I've been trying to explain that to her all afternoon, tomorrow, boiler service, Tree feller next february. No doubt tomorrow it will start over again. And facebook, she's obsessed, it's becoming an unhealthy obsession now. She spends all her time, "Deleting" things she doesn't like and reports them as offensive. Only recently I noticed someone had messaged her asking how advertising her dad's sofa could possibly have offended her. I'll probably leave her to facebook, it's an easy option, it's almost like a habit she's got into. I suspect she's not using it to its full potential. I really am finding things hard. I know things will become easier in time, but things seem to be moving so fast I can't keep up. Two and a bit years, doesnt sound all that fast , yes, but eighteen months of that two and a bit years there was a kind of normality. It's only the past nine months things are getting more serious and as I mentioned earlier, things have taken a downward turn in just the last couple of weeks. Anyway it's late and I'd best sign off, another day tomorrow. Al
 

AlsoConfused

Registered User
Sep 17, 2010
1,952
0
Would trying for a bit more emotional distance when your wife behaves "unreasonably" help you cope with less distress?

If you were working for a boss who was occasionally irrational, self-centred, vicious and had a bad memory, you'd learn how to "fly beneath the radar" whenever it became necessary. You'd sidestep confrontations, even escaping to the next "office" at times. You'd distract. You'd focus your boss's mind on more positive thoughts.

It's harder to do all these things with your wife because you still so much want her to be the loving partner she used to be ... probably that's what she wants too. Sadly because of her illness, at times she's going to be horrid. Maybe it would be less distressing to treat your wife's behaviour as a problem to be solved compassionately if you could just tell yourself it's not "really" your wife who's behaving this way, just her illness?
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi, once again. Actually this is my third attempt at posting a reply, it's a kind of posters block I think. I here what you say and agree entirely with your replies. I'm always telling myself, it's not really her , it's the illness, but after a long day it's sometimes hard to believe it. It doesn't usually take much to cause some forms of meltdown. On the plus side it's very soon forgotten, by her anyway. I am hoping things settle down, at least so we can get into some sort of routine, but as I've mentioned in earlier posts, things seem to be moving at quite a rate. No sooner do you think you're getting on top of things then it's something different going on. Over the years we've been together, it's usually just the two of us plus the children, who've now grown up, we've both had work colleagues where we've both very occasionally done things separately. But now, it appears to be mainly just us two. It can seem very isolating at times. We do have some excellent and supportive friends but they too have their own problems, consequently we don't see the as often as we'd like. As I put these words into place it's also at the back of my mind that a lot of you know exactly how it feels , I understand that, what helps me is the very active of putting my thoughts and feelings down in print. It's almost like therapy. My way of coping. All the feelings and emotions we are going through at the moment are all perfectly normal for the place we are in. I also know that we are not unique, that there are many more just like us, many in fact a lot worse off than us. So perhaps I really can stave off those feelings of bitter disappointment and regrets after all, and just get with living and make the best of things. See, posting therapy does work for me.best sign off now, its nearly tomorrow, Al
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. Thank you for the reply hugs. It feels that at the moment we are in a kind of limbo. At the stage she is at she sees any help as interfering. The stress this causes her makes it easier to carry on just as we are , for now. I know this stage can't last for ever. Although at times I do wonder. I also know that however much she resists doing something, eventually she gives in. The Dr's visits, the scans, the medication, all initially resisted but now all finally accepted. So I've no doubt one day soon help will also be readily accepted. In the mean time it's business as usual, or unusual, because nothing is as it ever was. For a short time a while back I kept a diary of events, this was so I could keep a record of things that were said or done. It was useful at Dr appointments, but now I would find writing a diary impossible. Some days events are just so surreal and when she gets angry or upset her powers of reasoning go straight out of the window. There is absolutely no way I could put it in writing. So for now as I said, no change. I'll know when I need to call for help, it may be not too long from now. I'll sign off again now. Al.........and thank you again
 

suze

Registered User
Oct 12, 2006
62
0
Sussex
feeling cold and tired

Hi all
Is feeling extremely fatigued and feeling the cold a lot part of Alzheimer's, in anyone#'s experience? Husband is 78 and diagnosed 4 years ago. He is on 10mg donepizil and it has been suggested it could be the drug itself.....
Suze
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. In reply to your post. I honestly couldn't say if it was the donepizil causing the symptoms you describe or not. I can only answer from my wife's experience of them. Her, feeling cold and shivers, is no different than it ever was at this time of the year. The main effect it does have though is it causes her to feel nauseous, especially during the mornings. Also I think it has different side effects on different people, as long as it's working ,that's the main thing. Al
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. Some days are worse than others. Does that mean that the days that aren't as bad are better Days? It just seems like bad days and not as bad days. The word better never seems to be used anymore. In the early days of my wife's disease there would be the occasional event which would stand out from the normal. At that time I called them bombshell moments. Every few weeks, she would say or do something, something really odd or out of character, it was usually something simple, like, asking me how to spell a word or where something was kept. Over time these occasional, bombshell moments have got closer and closer together, now there is an almost continuous tirade, not only that, they're getting bigger, and slowly but surely I seem to be getting worn down , at the same time she seems to be getting harder to reach and reason with. Earlier on this evening I took her to the local atm, she couldn't get access to her cash, she needed a pin number, she hadn't only forgotten the number but had no recollection of ever even needing one, in fact she'd never even had one. Three weeks ago I took her to the bank, where without any problem, she transferred cash from one account to another, using the card with the pin number she now can't remember. A few months ago I would've classed that as a bombshell moments. But now its just another sad reminder of the inevitable. I do have an idea of what's coming our way, what I don't know is how I'll manage. People say, "You must look after yourself", well it's odd but although I know what they mean, l don't know how they mean. It's hard to explain. My wife isn't well, I feel fine, a bit stressed, but fine, so ,I look after her, I eat, I rest, I sleep at night. But it's relatively early days and I know it's going to get a lot worse. I have the feeling I'm about to answer my own question. I'll stop now , otherwise my own answer might keep me awake.
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
HI again. Not for the first time, I find myself lying here, in the dark, going back over the events of the day. Although it's not a bad thing, my wife choosing to go to bed early, it allows some valuable 'me' time. The negative side of this, it not only gives me time to go over today's events but what might be waiting for me tomorrow and the days after. It's an unhealthy pastime, I know, but wide awake at this hour I find it hard to think of little else. Daytime is much better, and with Christmas almost here the house seems that much brighter, sometimes things even seem normal. We're not having the usual house full this year, though all the family will be visiting at different times over the holidays. This is probably a good idea as it will be far less stressful for her. And make life easier for me too, less time spent in the kitchen. My wife is now into week three on donepizil, and the morning sickness isn't getting any better. Having said that, even before she started taking it she was prone to spells of morning sickness. I don't think she does herself any favours by not eating properly. It's getting harder all the time to find something she will eat. Anyway, I've noticed in other posts that there are worse side effects with that particular medication. It isn't easy separating the side effects from the symptoms. Well, that's it for another day, I'm almost getting used to this early retirement malarkey, although it's surprising how often I wake up just after five. Then find it impossible to get back to sleep as I'm thinking what the coming day will bring. All the best, Al
 

carol4444

Registered User
Feb 5, 2014
109
0
Thinking of you Al. I'm glad that your visitors and family will be visiting at different times over Christmas, makes life a bit easier. I always wake early too, thank goodness for iPads and tablets. Take care xx


Sent from my iPad using Talking Point
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi. 'Tis the season. The last thing I feel is jolly. Please don't misunderstand, I'm not one of lifes grumpy people, in fact until recently I was one of the happiest people I knew. But this is really testing me. I know that there are plenty worse off than us, and I should count my blessings, that my wife and I can still hold some forms of conversation, we're not too far down that road yet on the dementia journey. Then why do I feel so down Today? I don't know either. Maybe it's the season. The end of another year, and what a year. A time to look back and reflect on events, good, bad , sad and happy over the last fifty two weeks. Shared memories. That may be one reason for this low point. It's now impossible to share memories now. This is also the time of year to look forward, that too isn't easy. Please don't think I'm going under in a mire of depression. It's just a dip in the road on the dementia journey, I'll be coming up on the other side of it and be able to see the horizon clearly once again. I'm usually a glass half full type, at the moment it's a glass knocked over, it's not broken, I'll just pick it up and go for a refill. It is the season after all. Cheers, Al
 

snorkmaiden

Registered User
Mar 8, 2014
26
0
Surrey
Hi. 'Tis the season. The last thing I feel is jolly. Please don't misunderstand, I'm not one of lifes grumpy people, in fact until recently I was one of the happiest people I knew. But this is really testing me. I know that there are plenty worse off than us, and I should count my blessings, that my wife and I can still hold some forms of conversation, we're not too far down that road yet on the dementia journey. Then why do I feel so down Today? I don't know either. Maybe it's the season. The end of another year, and what a year. A time to look back and reflect on events, good, bad , sad and happy over the last fifty two weeks. Shared memories. That may be one reason for this low point. It's now impossible to share memories now. This is also the time of year to look forward, that too isn't easy. Please don't think I'm going under in a mire of depression. It's just a dip in the road on the dementia journey, I'll be coming up on the other side of it and be able to see the horizon clearly once again. I'm usually a glass half full type, at the moment it's a glass knocked over, it's not broken, I'll just pick it up and go for a refill. It is the season after all. Cheers, Al

Hi Al60. It sounds to me that you are maybe at the place that I found the hardest to cope with. The place where I was still disorientated by the change in my own life, in partial disbelief of Dads situation but had already started to grieve the loss of the Father I had known. And for him, he was poorly enough to display the same sort of erratic and odd behaviours you describe but still well enough to sometimes be aware of it! I think his complaints and outbursts, refusal to accept help etc. were sometimes a very frustrated attempt to maintain independence and control, unfortunately a fight against a battle already lost. It's very difficult, especially at this time of year when your memories of happy xmases past and how much now has changed are at the forefront of your mind. As others have said dementia progresses in stages, the things you struggle with now will be less of an issue later as other things take over. For me, I actually found it easier to manage when Dad got further along and became more passive, less frustrated and less embarrassed by his mishaps. My heart goes out to you. All we can do is the best we can do! You are doing a fabulous job, be proud of yourself! Here's a clean glass topped up for you. Bottoms Up. xx
 

Scarlett123

Registered User
Apr 30, 2013
3,802
0
Essex
Hi. 'Tis the season. The last thing I feel is jolly. Please don't misunderstand, I'm not one of lifes grumpy people, in fact until recently I was one of the happiest people I knew. But this is really testing me. I know that there are plenty worse off than us, and I should count my blessings, that my wife and I can still hold some forms of conversation, we're not too far down that road yet on the dementia journey. Then why do I feel so down Today? I don't know either. Maybe it's the season. The end of another year, and what a year. A time to look back and reflect on events, good, bad , sad and happy over the last fifty two weeks. Shared memories. That may be one reason for this low point. It's now impossible to share memories now. This is also the time of year to look forward, that too isn't easy. Please don't think I'm going under in a mire of depression. It's just a dip in the road on the dementia journey, I'll be coming up on the other side of it and be able to see the horizon clearly once again. I'm usually a glass half full type, at the moment it's a glass knocked over, it's not broken, I'll just pick it up and go for a refill. It is the season after all. Cheers, Al

Hi Al, and I'm sorry you needed to find your way here, but you'll have so much help and advice from others who are, or have been, in the same position, and can relate their own experiences, which might help you.

From my own experience, I found Christmas particularly hard, because everyone else, it seemed, was full of jollity, and casual questions, like "are you looking forward to Christmas?" were hard to answer. My husband's birthday was Christmas Day, and when he stopped understanding either event, it was very hard.

As you say, it's good that you can still converse with your wife, and can still create some happy times together, which you'll be able to look back on. That's what I'm doing now, because, after a long Alzheimer's journey, he died 2 years ago, on the 23rd December, but I'm thankful for the many decades we shared.

You've got a great positive attitude, so pick your glass up, fill it up ;), and have a nice refreshing drink. :)
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi. Thank you again for the replies, it really does make me feel better. Today could have gone better, perhaps I expected too much. Visitors this morning, then a quiet afternoon, time for me to prepare the Christmas dinner. My wife hardly touched any of hers, no surprises there. But while trying to enjoy mine she insisted on Christmas pudding, by the time we found it, apparently I must have hidden it, my own dinner had cooled sufficiently to make it unappetising. I could have microwaved it but somehow it had lost its appeal. One way to not gain weight over the Christmas period I suppose. It can be frustrating, but you know all about that. Then this evening we had another major meltdown, her tablet wouldn't charge, catastrophe, no matter how many times I've told her, she will insist on forcing and twisting the charge cable into the USB port. That will be two broken this year. I've got this one insured so hopefully it can be exchanged, she's only had it since October. So, stress levels through the roof at the moment. It's only a tablet, it can be fixed. It's a crying shame that the dementia can't. Boxing day tomorrow, wonder how that will go? More family calling by, I must admit my wife does seem to be a lot better when people are visiting, then as soon as it's just us two again it's all change, for the worse, with me on the receiving end. Good job I'm thick skinned. And that glass is still half full, only because my strongest tipple today was tea. It'll still be there tomorrow, if I feel the need. Al.
 

Cazb78

Registered User
Oct 6, 2016
50
0
Hi Al,

Just wanted to wish you a merry Christmas. I've been reading your posts and you are in a very similar situation to my dad. My mum has mixed dementia, although she is awaiting MRI results for hopefully a more specific diagnosis. Like your wife, my mum (73) showed small signs of dementia over the last year, but deteriorated significantly in September after a holiday. She has problems seeing my dad for who he is - he's often her dad, an old teacher, an ex-husband etc (she's only ever married dad) - and she believes she's not in her own home but an identical one elsewhere. Apart from that she's not too bad, but my poor dad is starting to struggle. She can be very unpleasant to him if he 'reappears'. She's given up cooking and cleaning mostly and Christmas has just seemed to pass her by.

Like you, they are quite isolated. They have friends, but like you say they have their own problems. I am only up the road and help where I can, but it's hard to always be there when I have children and a part time job.

I guess what I'm trying to say is you aren't alone. I keep trying to tell dad to come on here to chat to people like yourself, but he won't. But if you'd like someone in a similar situation to talk to aside from on here then let me know and I'll pass you dad's email address. Experiences may not be identical but emotions often are.

Wishing you all the best. Caroline x
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi Cazb. Thanks for your reply.. I can fully understand your dad not wanting to post on this or any site. I was a browser on this site for a long time before i dared to join and start to post. But once i had made that first leap into the forum pool i felt so much better. It feels like, instead of one sympathetic shoulder to lean on there are hundreds. As I've said numerous, well, perhaps several times, a problem shared and all that. Our youngest daughter still lives at home , our eldest lives nearby, and the middle two are a 90 minute drive and a five hour drive away. If we don't see them they phone, text or Skype, and yet we still feel isolated. I think the dementia does that. So i really do know where you're coming from. We're not as far down the road as your parents on the dementia journey but in far enough to see many of the similarities. So often now it's like living with a different person, and to be honest, not a very nice one. I know its the disease not the person, i never find that line helpful, and if in really honest, then i too have my moments, three deep breaths and walk away, its not failed me, yet. So try to get your dad on here, he really will feel better for it, i know i did. Thanks again Al , all the best
,
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. I recently thought i was sleeping a bit better. This morning i seem to be back to full on sleeplessness. I don't know why, nothing has changed,not much anyway. But for some reason i woke at four thirty with a sense of hopelessness. I guess this is quite normal under the circumstances. Half an hour ago i was lying here, in darkness writing this new post in my mind. Now I'm a bit more awake all those words have dissapeared, a bit like a bad dream fades. Sadly this isn't a bad dream, its real life. Im not only finding it difficult thinking what to write here. In also having difficulty trying to guess what happens next. I think that's what's keeping me awake now. Of late, my wife has been having what could best be described as silly outbursts, usually over next to nothing. Bit by bit they're now turning into full on tantrums devoid of all reason. That's what is occupying my thoughts now. I really don't feel strong enough, with a child you can tough it out, when its an adult, one you've known and loved for so long, and you just can't get through to them. A child grows up, calms down, usually, think teenage yearsit gets worse before it gets better. but watching and living with my wife that hope has gone, its as if she's regressing back into childhood and taking all memories with her. Its getting on for a couple of hours now since i woke up. Another couple of hours and my wife will be up, the first thing I'll hear is what sounds like a Greek wedding party as she empties the dishwasher, as long as i have a handle with a cup still attached i can at least enjoy a cup of tea when i follow her down. I feel better already, im sure i can manage a couple of hours sleep, especially as I've unloaded a few thoughts here. I must try anyway, i find myself thinking that a lot lately, i must try. Al
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,993
0
72
Dundee
Good morning.

I'm sorry that things are so difficult. I always think that things seem so much worse while you lie in bed wide awake in the darkness. I'm glad posting here has helped make you feel a little better. I hope the day us as good as it can be for you both.
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi Izzy. You're not wrong. On a day like today, sunshine and clear blue sky, with the imminent arrival of friends, it not only feels a different world but I feel so much better about everything. I'm just going to enjoy the moment. Thank you and wishing you all a very happy new year. Al.
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi . It's only a few days ago since I last posted on here. It seems like only last year. I've so looked forward to this day, January third, though now it's arrived in seriously don't know why. The tree is still there as are the lights around the window, everything is just the same, including my wife's dementia. I normally look to the new year as a kind of new beginning, a fresh start , a clean sheet spread out in front of me. Not this time. I took my wife to the Dr's today, another two kg down, when we married there was hardly any weight on her, as the years went by her weight increase induced me to joke with her that she was three times the woman I married, not any more. I do try to get her to eat more, all the things she used to like now taste different, so I try new different things, oh that's nice, she'll say, then leave most of it. I guess I'm not the first to go through this and I certainly won't be the last. I've also been concerned lately with her angry outbursts. I can understand why she has them, what worries me is my reaction to them. I'm frightened of reacting back. Doing something in the heat of the moment that I know I'll regret. Up to now I've managed to bite my lip, count to ten, or just walk away. It can be quite worrying sometimes. All I do know is it's relatively early days and things are going to get tough in the coming months. Up to now all her sick notes for work have said, 'stress ' , yes, you read it correctly, sick notes for work. I finished work last November to become her carer, yet technically she is still in employment, her note today read , 'vascular dementia ', so now, that's it, surely the denial has to stop now, even she admits it's something more than stress! So, what next? I suppose I should start to dismantle the Christmas tree, luckily we kept it simple this year. Later this year I'll have to consider changing the title to three years to get this bad, but I think I shall stay as Al60, I quite like that :)
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi. It's been just over a week since I last posted here, yet it feels more like a month. Nothing has changed, everything is the same, same denial, same food battles, same difficulties with medication. The only change I've seen is in me. I just feel lower and lower. It might be the season, the run up to Christmas was stressful and Christmas itself had its moments but it was a distraction, something else to think about. At the time I was thinking I'll be glad when the holidays are over, get back to normal. Now it is all over I've come to realise normal has gone for good. If there is one thing that would make me feel better, it would be an end to the denial. If my wife could just see I'm only trying to help, in her world I'm just interfering in her affairs, she doesn't see it that someone has to sort things for her. I was introduced to the admiral nurse last week, I'm optimistic that she can help me, she has far more knowledge of dementia care than I could possibly imagine. Care, I think maybe that's where my wife may be struggling, what possible care does she need, there's absolutely nothing wrong with Her! Sometimes I just can't do right. I've had my moan now and already feel better:) Would love to continue but duty calls. signing off for now Al