The person husband saw yesterday was a psychiatric nurse, she was absolutely lovely. The session followed the pattern of the previous appointments 5 years ago when husband was first diagnosed with cognitive impairment. She first asked him a series of questions, asking for my confirmation or disagreement after each one. There were some easy questions, such as what's the date, day of the week, year, husband's birthdate, mine, our wedding anniversary - all of which he got right, although he did struggle a bit with the date and day of the week, getting them right after 3 or 4 attempts. She asked medical history questions, which I had to help with a few times. Then she asked about present problems - husband was/is in denial about a lot of these and outright disagreed with me a few times. I explained to the nurse that this is part of the problem in recent months - he's in denial and argumentative.
Husband then had to do a written test - in view of his dyslexia, the nurse read out the questions, he gave her the answers and she wrote them down for him. These written tests were almost exactly the same as the ones he was given previously, I remembered most of them although husband didn't have much memory of them. It was quite obvious to me that his mental abilities had declined quite a bit since the last lot 5 years ago, a few of the tests he struggled with quite a lot.
One slightly annoying thing was that husband kept cracking jokes and going off at a tangent with rambling stories which had little or no relevance to what he was being asked. I'm fairly sure that he does this as a sort of defence mechanism, in order to disguise the fact that he's a bit nervous and isn't too sure of the answers he's supposed to give - I think the nurse realised that too.
She's now going to score all his answers and then discuss everything with her superior, the psychiatric consultant, next Thursday. She will ring us next Friday with his recommendations and plan of action going forward - this may mean her coming here to do some further tests, or us going to their offices for more detailed tests with the consultant. He may also request a brain scan.
So now it's a case of waiting for the next steps. The nurse gave me a leaflet with details of lots of different agencies to contact for advice and help, both for acute or urgent situations or longer term help.
Husband, somewhat strangely, asked me when we got home if I'm now relieved that I don't have to put him in a care home just yet? I replied the thought hadn't crossed my mind (although it obviously has his) as he's not at the stage of needing to be in a care home. In any case, we're only right at the start of this journey as yet, I doubt we're yet done with all the questions, tests etc. I do feel some relief that the ball has been set rolling, I'm being listened to and taken seriously, at last. It's been a long time coming, quite frankly, and the last few years have been a great strain for me. It's not easy when people think you're exaggerating, because they don't live with us and don't have any idea how things are on a daily basis! There are some people I would very much like to say "I TOLD YOU, BUT YOU DIDN'T BELIEVE ME!" to their faces.
Looks like it's a mixed bag of weather for the next several days, with the temperature dropping a fair bit towards the end of next week. I'm not planning on doing much for a day or two, I feel a bit wrung out, I think I was worrying about husband's appointment more than I was letting on.
When I was at work (medical research) I fought so hard to get those questions re what day/date/year is it removed from that questionnaire. If, like us, you're retired and not caught up in the work/family rat race, it's so easy NOT to know those details. Every day is a weekend for us and bank holidays? What are those? Much better to quietly talk to the spouse/carer first and then conduct the other tests knowing what the spouse has told you. One recommendation, if they offer you any support, accept it. Even if you don't feel you need it. There will be massive cuts to carer support services, whichever government is in power, they'll start with çutting back on new clients before axing existing services. At least if you're in the loop, you're a little bit more protected.
ReplyDeleteI am relieved that you are finally being heard. I remember those questions from when I took my Dad to the memory clinic. To be honest, I struggled with some of them, too. As Happy Introvert says, I often can't remember the date and sometimes get muddled with the day. When you're retired, the days all blend together, unless there's something special happening.
ReplyDeleteThe weather is certainly changeable at the moment, isn't it? I was in t-shirt and sandals the other day, now I'm back to my thick winter coat! I wish it would make its mind up, preferably settling on the warmer side! xx
I agree strongly with Happy Introvert's comments above; I'm long retired, living alone for many years and often have no idea what day it is (Alexa is a great help!) I have a weekly grocery delivery and often the driver is the only person I see or speak to. It's a lonely life when you aren't mobile and your sight is failing.
ReplyDeleteWhen my husband took the tests, I was sat in the room with him, hearing the questions and his answers. It was torture for me. He did not grasp the concept of what he was being asked in a large section of the questions. He missed many more than he got right. I KNEW that if I could've had a minute to explain to him, it would've made a huge difference. Of course the outcome was sad. Am so glad you are on the road to serious help.
ReplyDeleteSo far we have not had to take those tests, but Harvey quite often asks me what day and date it is. We both seem to lose that date thing now that we are retired.
ReplyDeleteGod bless.
I'm glad it was done so diligently by the nurse. The going off on a tangent thing is part and parcel of the problem, so it's probably for the best that he showed that behaviour, as the nurse will note it down in the report. It's so hard, all this stuff, and you have all my sympathy. Hang on in there!
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