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Two years to get this bad

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hi all. This is a first for me. This year we celebrated our 40th wedding anniversary. Two years ago this month,l came home from work to find my then 57 year old wife in an extremely agitated and panicked state.she couldn't understand where I'd been, eventually she calmed down. I've never forgotten that evening as I think that was the start. Over the next 12 months there were other equally odd events, getting lost in familiar places, forgetful, repeating questions and increasing episodes of confusion. It was around October last year that she stopped driving. I was worried enough to make an appointment with my gp. The hard thing to do was get my wife to go. I succeeded in getting her to go as I was concerned about her weight loss. She chatted to the gp about herself then did a memory test and passed. That was that, I'd never get her to go again, all her blood tests were OK, she'd passed that test, there was nothing wrong with Her! But there was, I'd noticed, our four daughters had noticed and her work colleagues had also noticed. Everyone could see a change but her. She used to be so organised,but now, sometimes if she's been looking for something you'd swear we'd had burglars, chaos. Things got worse over Christmas and new year. She was struggling at work too and by April she had to go off on long term sickness. At least now she had to have monthly gp visits. She had another memory test with the gp, she passed but she had deteriorated noticeably. She was referred to the memory clinic and had her first assessment and mmse and passed, still she was in denial.a couple of months later, September, she saw another nurse from the clinic, this time assessed for stress anxiety and depression. The it was decided it probably was a memory problem. Yet another mmse, this time not so good, she dropped seven points ,thats over five months. Now they're concerned, shes seen a psychiatrist, is getting a designated nurse and next week is being assessed as to how she can cope in the home. Also next week she's booked in for a spect scan, which I hope will give us an answer. Some of her memory problems seem quite severe, for example, she was asked how many children do you have, she had to think and do a finger count, we have calendars, diaries, a new whiteboard and after two occasions recently when she decided to get up just before midnight for a 2pm appointment, I've invested in two dementia clocks. Even that isn't always successful. It's Saturday night and several times she's been talking about Monday tomorrow so I'm hoping for a diagnosis soon. But I'm also aware it could come back clear. I handed my notice in this week. It's a big step but I'm more use at home the way things are, yes I'll miss it, over the last few months work has provided some respite. But now,,it's for the best. Even now with everything going on she is still in denial, she's convinced I'm taking early retirement because of my health. Whatever this is its so hard on her, I know we'll cope with whatever is thrown at us, lm not going to say we've had it worse because we haven't, but there are plenty worse off than us. Sorry it's gone on a bit but it's hard putting two years into a few words. I'll keep it short next time, AL60
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
Hi AL. welcome to TP
There's a lot of things in your story that ring a bell with me. My wife forgot how to get the bus home from work at early 50's, but getting a diagnosis took some time/years as the GP found things like the menopause and a thyroid issue to blame, neither of which turned out to be right, the thyroid was an issue but not relevant.
Now 12 years down the line my wife has gone into a care home, all of the stories on here run differently (mine is on the link below) all I can say is welcome to the site and I'm sure you'll get all the help and support you need on here.
K

http://forum.alzheimers.org.uk/showthread.php?89276-Kevinl-that-was-a-week-to-remember
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,532
Yorkshire
Hello AL60
welcome to TP
never apologise for how much you write, that's what TP is for; a wonderful place to come to get anything and everything off your chest; it's a safe place to unburden as members understand and will offer support, advice, a shoulder, a smile
your wife is a fortunate woman to have you by her side, holding her hand on this surreal journey
maybe allowing her to believe you are retiring for your own welfare (not so far from the truth) is a kindness to her and will give reasons for having medics involved in your lives and support in the home when that is needed - she may well never really be able to take on board her diagnosis and situation; it's not denial exactly, it's that possibly the part of her brain which deals with that type of reasoning is impaired
I've found with my dad that I now expect the unexpected and take each day as it is
best wishes to you, your wife and your family
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
My mother had surgery and unfortunately they went over the time period by an additional 7 hours which caused the onset of dementia. They did warn me afterwards. What they didn't say was how quick she would deteriorate.
Hi CardiffLady, welcome to TP
Surgery of itself doesn't "cause the onset of dementia" there has to be an underlying cause, but it does make things get a lot worse and a lot quicker.
If the surgery was for life preserving reasons then it had to happen and they didn't spend an extra 7 hours for the fun of it.
No one with or without dementia gets over a major operation in no time at all and about the worst place to be is in a hospital constant; noise, machines going beep, corridor noise, people chatting...
Start a thread and tell us the story and we'll all do what we can to help.
K
 

canary

Registered User
Feb 25, 2014
11,375
South coast
Hello Al60 and welcome to Talking Point. The MMSe test only tests the short-term memory, which is often preserved in early onset dementia or things like FTD and doctors either dont know, or dont consider dementia when faced with a younger patient who passes the mmse. My OH was diagnosed with "depression caused by marital problems" for a long time, even though I could see he was deteriorating. Im so glad your wife is now being investigated.
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hello again. I'm so glad I decided to join this forum. There have been several times of late when I held my finger over the subscribe button, only to change my mind at the last minute. Why, you ask. Well, a lot of the reason was that I thought I didn't belong here, maybe my oh isn't the only one in denial. As time has gone on it seems more and more that it can only be some forms of dementia that's giving us so much to worry about. And yet even now there are times when I think, it could be something else, something we can fix. Her psychiatrist stated that although she shows many of the classic symptoms, there are things that don't fit.sadly, although he is the expert, he has only spoken to her for half an hour , a conversation which my wife has no recollection, I've known her for 44 years, I think that qualifies me for something anyway. Tomorrow, we have a visit planned to assess her needs around the home. All she knows is we're getting a caller from someone from the memory clinic. If she knew what it was about she'd be up all night practicing, stressing about how to operate the oven, how to fit the vacuum cleaner attachment , how to, well, I'm sure you understand and it changes day to day, with some days better than others. So ,I just want to say thank you for listening, for your kind replies and just for being there. And why didn't I sign up for this month's ago. Al
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
You never know what the people from the memory clinic will ask but they're difficult to fool is my experience. One asked my wife for a cup of tea, she got coffee with cold water from the kettle and no sugar or milk "we don't have any milk" my wife told her so the assessor opened the fridge door and there it was. Questions about getting a bus from the end of the road, my wife denied there was a bus top there even though she used to get the bus to work there everyday, they caught her (without correcting her) out so many times it was embarrassing. It was all very professionally done, no straight questioning about her memory just a little chat then they'd throw in something like one needed to get a loaf of bread, how much would it cost, £5 apparently according to my wife :eek: It's the Co-Op not Harrods I thought.
Denial is common enough mentioning the "A" or the "D" word to my wife was never a good idea, fast way to get a slap.
K
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hi KevinI, have read your post with interest. I can see the similarities, l must admit, I wasn't particularly looking forward to tomorrow,in fact I'm still not but from what you've put in your post I'm less worried. I'll just leave it in the hands of the professionals and see what happens. I suppose I'm just being a bit protective and not wanting to see her upset, while at the same time wanting the assessor to see how it really is. Awful isn't it. I quite often wonder what it would be like if it was me that was suffering this and how my oh would be. I don't suppose I'll ever know. I'll post again tomorrow after the assessment, I'm sure all will be well.Al
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Hoping today's assessment has been as helpful as it can be. An impartial, thorough assessment of what's happening can be both a relief and cause huge distress to carer and patient alike (because neither can in-know the enormity of what's facing them). Hugs.
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hello again. Well that's the assessment over, not quite what I expected. Two assessors arrived, sat down, had a friendly chat with questions aimed at both of us but mainly my wife. Asked how many children we have, "Five", then that look again at me, "Isn't it"? no, it's four for now, trying to make light of it. Then she was taken into the kitchen to make a cup of tea, which I think went OK, I say think, because I didn't get one, no matter, I've tasted her tea before.. While she was in the kitchen i was asked by the other nurse about things, one of the questions was , is she of dressing herself, alright, considering the whole interview took place with my oh wearing here blouse back to front I would have thought this was self evident. Prior to the visit she was wearing a heavy fleece zipped up all the way and only took it off as they arrived. So all in all, not what I expected but I'm sure they got the information they needed. So we'll just carry on and see what comes next. Tomorrow we'll be introduced to our designated nurse and point of contact, we've been informed that shes a lovely person, but then, up to now all the people we've met have been lovely people,but that won't stop my oh from worrying about tomorrow., it'll be fine, I just know it. I'll keep you posted. Al.
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hi again. There seems to be quite a lot happening at the moment, don't misunderstand mome , after all the months of nothing happening I'm Pleased. Yesterday she had the assessment in the home. Today we were introduced to our nurse, from now on shell be making weekly visits. While they were chatting to my wife the D word was mentioned, my wife was visibly shaken, but who wouldn't be, then five minutes later down come the shutters and it's forgotten, or is it? Maybe it's just bottled up and adding to the stress making things even worse. Tomorrow I'm taking her for her spect scan, more stress for her. We've been told the result from this scan will be definitive. Well from what I've read on many other posts a definitive answer from any scan is quite rare. But I believe we'll have a result one way or the other within a week or so..so that's it for now. excuse any typos, I'm using my oh tablet, there's barely any battery left and I can only just see, I'd charge it but she's destroyed the usb socket, I kept trying to tell her but she just won't listen, but that's the way of things now. That really is it for now.Al
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
So everything will feel "up in the air" and unsettled BUT at a deeper level progress is being made. That's a fairly good result, even if it doesn't feel like one. Hugs.
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hi again. Agree entirely, up in the air doesn't come close. But compared to many there seems to be a well structured and fast moving plan, all aimed at finding what's wrong. I have absolutely no complaints at all about the care she's receiving. I took her to the hospital today for the spect scan. The staff were excellent. We arrived early to allow for traffic, and my wife was taken straight in to the scanner room, I was allowed to sit in and wait.The procedure itself only took about 25 minutes And just 10 minutes later we were allowed home, just one hour after arriving. I know my oh was unhappy about going and right up to the last minute I was afraid she might back out. I needn't have worried, she was OK. Things aren't getting any easier at home though. Its getting to be a challenge, every day something else, I really do struggle sometimes to keep it together.. her memory and confusion seem to be getting worse week by week, she's just asked me what colour the living room curtains are. We've lived here Rory 30 years and they've always been green. Tomorrow we're having new bedroom wardrobes delivered, they are due in the afternoon, if I'm asked one more time , when are they coming,!!! It can be frustrating. But you know all this, you're there now or you've been there but its good to offload, there's no doubt about that. So thanks for being there. Al
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hello once again. As I start to compose this message I'm undecided as to whether I'll post it or delete it. I came to bed just over an hour and a half ago and for some inexplicable reason found myself overcome with grief. I suppose it should be obvious why, but why tonight, I don't think anything has changed. There's no diagnosis yet so there's still hope. So why am I so upset tonight? Is it because I still have this image of her , having the RA fluid injected into her arm while being asked to confirm her date of birth and address, and me having to finish because she couldn't remember? Or is it the memory of her lying on that scanner bed, so good with her favorite blouse.? Whoever coined the phrase , cry your self to sleep, never tried it. It's not working for me anyway. So much for an early night. I want to know the result as soon as possible, yet at the same time, I don't. I didn't feel like this earlier on in the year when she had her ct scan, so why now? Anyway, I'm feeling a little better now, so some good has come from writing this. There are just so many things on my mind at the moment, none of it good, I really don't know whether to post or not. Here goes, a trouble shared and all that.A, I'll feel better in the morning, I just know it. Al.
 

Tcake2

Registered User
May 29, 2016
22
Hi Al, I know sometimes in the quiet at the end of the day I look back at the day's events and feel such sadness and despair at what is happening to someone I love. It's so unfair, so relentless, so tied up in memories of the person they were and still are and yet bits of them are slipping away before your eyes. In the daytime we have to be strong and upbeat and just cope, but sometimes alone in the night we just need to grieve.Hope you manage to get some sleep. Thinking of you, sure we're not alone lying here with a head full of rubbish, tomorrow is another day and we'll gather up the pieces and carry on - what else can we do? Hope things look brighter in the morning. Take care.
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Thank you Tcake2. You're spot on. Sometimes it just takes a few words to point out the obvious. You don't always understand quite why you feel the way you do. I was right about one thing though, today was better. Thanks again, a kind words makes all the difference. Al.
 

Tcake2

Registered User
May 29, 2016
22
So pleased today has been better. Sometimes when I'm on here I picture us all in a big circle, and I know that if I reach out there will always be someone who's been there, done that and got the t shirt and the hat. Hope tonight is easier and you get some proper rest. It sounds like your OH is receiving excellent care and whatever the diagnosis, at least you will know what you're dealing with. Your love for your wife comes across with every word you write. Try and get a good night's sleep, not always easy I know. Sometimes I'm so tired my face feels like it belongs to somebody else ( and they're more than welcome to it ). If I had a new wardrobe I just might shut myself in it :eek: along with my hat and t shirt.
Doing my best to make sense of something that makes no sense at all.
 

Alonzomp

Registered User
Oct 9, 2016
4
I know exactly how you feel. I went through the same thing with my 56 year old husband. AFter two years and 9 doctors we did not have an answer. I finally got him into the Mayo Clinic last month and we got a diagnosis. it was hard to except but now we can move forward. So keep trying hopefully you will get some answers.
 

AL60

Registered User
Oct 14, 2016
506
Cheshire
Hi again. This is the third attempt at posting today. Not because I've had a bad day. On the contrary, I've had a rather good day. And that's the problem, guilt. Only a little bit guilty. My wife has been out with friends this afternoon and I feel as though I'm using them. Yes I know I'm wrong, I used to feel the same when she was working, it was like I was letting her work colleagues take the strain while I took things easy. And all my guilty pleasures today involved, was catching up on the washing and ironing and a bit of tidying. Quite therapeutic really. Trouble is, the wardrobes are slowly filling up, leaving less hiding space. I read your post Alonzomp's, 9 Dr's in two years! That's excessive. Weve been fortunate to have had only one very good, listening GP . I must admit there were times I thought she was listening but not hearing but that's part of the frustration . But now I've no such complaint , for the last few weeks it's happening all at once, sometimes it's a bit too fast, but now I'm waiting for the scan result. The thing is, I'm dreading it. Next week our second youngest daughter will be visiting from Scotland, that will provide a pleasant distraction for my wife. So thats another day over, let's see what tomorrow brings. Al.