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Need to unload/talk

Unsure2021

Registered User
Jan 1, 2021
98
0
Hi all ,I am new to tp, I accidentally stumbled across these forums a couple of months ago while googling some of my other halfs symptoms to see if they were related to his diabetes but I kept getting sent to dementia links ( must admit the thought had crossed my mind,but he is so young,only 45) I started reading through the posts and so many light bulbs went off! I have so much to vent and unload but just the thought of talking about him behind his back makes me feel sick and I just keep coming back to, what if it's just me? What if I'm just being a bitchy partner,a nag... I'm not quite ready to talk about it,but I thought I would say hello and to say thanks for your post's it has really helped reading them these last couple of months
 

canary

Registered User
Feb 25, 2014
18,897
0
South coast
Hi @unsure and welcome to DTP
We have all been there, wondering whether what we are seeing is real or whether its just us imagining things. I also understand the feeling of betrayal - the first time a wrote a letter to OHs GP without him knowing made me feel awful, but if it is dementia then its something you will have to get used to, Im afraid. Im still quite careful about what I post, so that I cannot be identified.

Post whenever you feel ready. In the meantime, do keep reading stuff - it helped me immensely at the beginning and I learned so much.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,420
0
Nottinghamshire
Welcome from me too @Unsure2021

When I first joined I didn't say much and it felt awful, like a betrayal, to lay bare my dad's behaviour but as @canary says we are all anonymous.

When my dad first went to the GP about his symptoms he was given blood tests to rule out other conditions which could be causing his problems before a diagnosis of dementia was given. It's worth getting a check-up to see if there is a physical problem which could be treated.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,494
0
Yorkshire
Hello @Unsure2021
A warm welcome to DTP

You can come here and write whatever you want knowing folk understand

Maybe let your husband's GP know of the symptoms that are causing you concern... there are other causes of things that can seem to indicate dementia eg stress, vitamin deficiency, depression so it's worth having a check up and blood tests as there may be meds to help... the GP may not be able to discuss anything with you due to patient confidentiality, but might call your husband in eg for a review of his diabetes, and be able to do a general 'well man' check up

I do appreciate how it feels to be talking of your husband without him knowing... you are clearly concerned, though, and your peace of mind matters
 

Weasell

Registered User
Oct 21, 2019
1,281
0
Could you keep a secret diary?
It could be very useful in the future!
The initial test for dementia contains questions like ‘ what is the name of the reigning monarch’ the odds in him failing it are very low.
As you will know the term dementia covers a number of different conditions. Not every type of scan picks up every all of them. Well documented evidence of behaviours could point someone in the right direction! ( possibly?)
 

lollyc

Registered User
Sep 9, 2020
801
0
I hope you are wrong, because no-one wants to be in this club, but do keep visiting and posting.
For me the best thing about TP (and there are many good things) is the anonimity. Most of us are dealing with a situation we never planned for, doing things for our loved one that we never thought we'd have to. I, personally, would find this difficult to admit to, or discuss, face-to-face. No-one will judge you here.
 

Unsure2021

Registered User
Jan 1, 2021
98
0
Thanks for your replies, I've seen the note to gp mentioned before a few times,my problem is due to an horrendous visit to the gp about 5 yrs ago ( diabetic nurse had told him there was a note that gp wanted to see him about blood results)where he was pretty much told that he was just fat and that he was wasting the doctors time ( I was there otherwise I wouldn't have believed it) and he got a glimpse of liver scan report that said something like couldn't get a clear view and fatty liver,he's outright refused to go,no diabetes checks, letters go straight in the bin,if I get letters first and make note on board , he'll rub it out,he refuses to step foot inside, refuses to go to any appointments they send,he hung up on the receptionest when she tried to book flu jab.ive said well see a different doc...so they can tell him he's fat????? How about a different surgery then...so someone new can tell him he's fat???? Your due Wellman check.......I know I'm fat I don't need them to tell me????? If they want him to have covid jab then he said they will have to do it in carpark as he's never stepping into a gp surgery ever again
 

Unsure2021

Registered User
Jan 1, 2021
98
0
Gp is aware of some of my concerns as he gave oh a memory test around 5 yrs ago which I wasn't present for and due to the horrendous appointment I have no idea what results were like
 

canary

Registered User
Feb 25, 2014
18,897
0
South coast
Unfortunately, a lot of people with dementia will refuse to see their GP - about anything. Eventually, there will be something that he will have to see a doctor about.
If it is dementia, it cannot be hidden forever.
 

lemonbalm

Registered User
May 21, 2018
1,802
0
I'm sorry to read your posts @Unsure2021 . The poor chap's probably pretty depressed after the shocking treatment from the GP. I'm sure you're very anxious too. Will he go out for walks with you? I'm just thinking being outside might lift the mood a bit, which would be a start. It sounds as though this might be a slow process.
 

Unsure2021

Registered User
Jan 1, 2021
98
0
I have been keeping a kind of basic diary ever since the diabetes diagnosis,he had no interest at all about learning about it, refused to go to the course that would have taught him about it,I wanted to see if I could start recognising high and low sugar symptoms,I maybe should put about more detail in it, it's more of a checklist I guess notice something new,note it down,see if high or low blood sugar related
 

Unsure2021

Registered User
Jan 1, 2021
98
0
I'll go into more detail tomorrow but basically I'm disabled,he's actually my career I have mobilty issues and actually need more exercise than I'm getting,I can feel the weight going on and it's causing me more pain,I've tried to get him out walking with me and his reply is ..what if someone sees you out walking? They will think your not disabled send you to work,take carers off me and make me go to work...is that what you want? You want me out at work, trying to get rid of me. .....it's a running theme for pretty much anything outside the house
 

My Mum's Daughter

Registered User
Feb 8, 2020
197
0
As your husband is refusing his diabetic checks, are you able to get him to see an optician? I know this sounds a little daft, but please try to get him to have his eyes checked.
 

MaNaAk

Registered User
Jun 19, 2016
8,034
0
Essex
Welcome from me too @Unsure2021

When I first joined I didn't say much and it felt awful, like a betrayal, to lay bare my dad's behaviour but as @canary says we are all anonymous.

When my dad first went to the GP about his symptoms he was given blood tests to rule out other conditions which could be causing his problems before a diagnosis of dementia was given. It's worth getting a check-up to see if there is a physical problem which could be treated.

I agree with @Bunpoots and I remember when I was in your position. When I finally got dad to a doctor he had the necessary blood test and they found that metformin was making him anaemic and this can, so I am told, exaggerate any symptoms of confusion.

MaNaAk
 

canary

Registered User
Feb 25, 2014
18,897
0
South coast
I've tried to get him out walking with me and his reply is ..what if someone sees you out walking? They will think your not disabled send you to work,take carers off me and make me go to work...is that what you want? You want me out at work, trying to get rid of me. .....it's a running theme for pretty much anything outside the house
Im sorry to say that this attitude is absolutely typical of dementia. Everything becomes about them. They lose empathy and their world narrows and narrows so that eventually all they can see is their own wants needs and comforts
It is so hard (sigh)

Can you get a froend to go walking with you, or can he not be left alone at all? Could you organise to go out when his carers come?
 

TNJJ

Registered User
May 7, 2019
2,660
0
cornwall
I'll go into more detail tomorrow but basically I'm disabled,he's actually my career I have mobilty issues and actually need more exercise than I'm getting,I can feel the weight going on and it's causing me more pain,I've tried to get him out walking with me and his reply is ..what if someone sees you out walking? They will think your not disabled send you to work,take carers off me and make me go to work...is that what you want? You want me out at work, trying to get rid of me. .....it's a running theme for pretty much anything outside the house
My dad is/was diabetic. Type 2.He no longer takes it as it can affect the kidneys. Dad also has mobility issues and has to go outside in a wheelchair. He also has Vascular Dementia alongside other ailments.
His blood sugar is good now apparently but that’s because I do the cooking and shop for food online.
Have you tried claiming for Attendance Allowance or other benefits that will help you to organise a sitter if you wanted to go out?
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
I haven't any practical ideas to suggest but would say that your priority should be to look after your own health. You OH may not be able to care for you indefinitely so you need to plan ahead for that. Setting up POA is recommended for both of you. Are there any other family members that can help?
 

Unsure2021

Registered User
Jan 1, 2021
98
0
Opticians..he goes to normal appointments as long as appointment sent,if it's a reminder or I make appointment he won't go, luckily I had a word with them and they put a note on his records to always send an appointment not a reminder....his diabetic eye screening,he did miss 2 or 3 but the last one they sent a reminder then 2 weeks later they sent an appointment which he willingly went to. I remember him getting a letter from the doctors about not going for his diabetic eye screen( one of the letters I managed to grab) the opticians had 'grassed' him up to the doctor about not going and he thought it was funny and letter straight in the bin.
 

Unsure2021

Registered User
Jan 1, 2021
98
0
Little bit of background, sorry it may be a long post.

7/8 years ago I noticed he was having dizzy spells whenever he stood up,no idea how long it had been going on,tried to act normal, talking while hanging on the table, nothing wrong he said, whenever he excerted himself he would have trouble breathing, become very light headed and feel sick. He was still working at this point and he had a bad dizzy spell at work if the desk hadn't been next to the wall or if he'd wobbled the other way he would have been on the floor,he was unsure if he actually passed out for a few seconds or not,lots of tests done. bloods ....only sugar came back borderline all others fine, sugars repeated after 3 months came back normal (no diabetes diagnosed yet) ECG,stress test 48hr blood pressure and heart monitor all they found was a mild irregular heartbeat that they said doesn't normally cause problems and blood pressure was dropping when he stood up, just take your time standing, wiggle feet around before getting up ,if continues come bk and they'd try beta blockers,continued getting dizzy but didn't go back.

Next couple of yrs were bad, family friend passed,he broke his wrist,hosp,physio,MRIs,still not right, nerve damage, he got made redundant,I had finally after nearly 20 yrs got a diagnosis for myself (arthritis,spine, pelvis) and was going through pip assessment,he had to sign on.very very pushy,they just wanted him off their books, didn't matter if just signed up for an agency ( whether they supplied work or not) he would be off their books,he mentioned the blood pressure and irregular heartbeat and was told he couldn't tell potential employers as it would be classed as him putting obstacles in the way and he would be sanctioned....talk about piling the stress on......anyway he got a warehouse 12hr night shift temp job.

First shift...I remember hearing him knocking on the front door and asking one of the kids what time it was.he then came straight upto bed. i got up,he got up couple of hrs later and immediately I knew something was wrong,his speech was way off, very slow and slurred,he could understand everything but couldn't really reply/ talk very well.he could only remember part of the way home,the rest of the journey was a blank, including crossing 2 main roads ( he walks, never been interested in driving) we managed to work out he was missing about 30 mins of time,no idea what happened.
He didn't want the hospital so compromised by ringing 111 for advice, they sent a doctor car thing to check him ( don't know proper term) and immediately ambulance called.

Still no idea what actually happened,there were a few scratches on his glasses,a little scratch on his head,fingerprick blood was normal but the fuller blood sugar test was high, diagnosed diabetes, abnormal liver tests,had scan (results were what he caught a glimpse off on that horrendous appointment)

They don't know if it was mini stroke,low blood sugar, whether he'd tied his shoelace or something and the blood pressure dropped, did he hit his head, have a concussion?

He was allowed home same day ,ECG, blood pressure tests again ,liver scan,heart scan,he went to all did as told right up to THAT appointment.was maybe 6 months .

Due to collapse he was signed off work while they investigated,handing sicknotes in,I mentioned a few concerns to gp and memory test given,job centre gave him a capability for work assessment which included a memory test,I was present so I know he remembered 3 of 4 items told to remember at the beginning and he struggled with counting backwards from 20 in 3's, slow and got 11 to 8 wrong he went to 7, and he didn't seem to understand what she wanted him to do to begin with.

He was supposed to carry on handing in sicknotes after the assessment but due to a comment from THAT gp at THAT appointment about they can't keep giving out sick notes just for diabetes,
he refused to ask for another and job centre dropped the claim ,but by this time I had been awarded pip and we put in for him to claim carers,it hadn't been changed over to universal credit yet so we were getting child tax credits,my pip and eventually carers but not any actual benefits for me or the oh, I couldn't put him through the stress of going through another claim for income support for us, I'd have to go through the work capability assessment and I just couldn't do it to him,he needed some stress free time.

We now have gone through the whole u/c assessment and it's all done and dusted.

It's actually been quite thephaputic writing this out, reminding myself of all the stress and **** he was put through when he had to look for work last time,I can see where the 'they will take carers of me and make me go to work' stress/ panic is coming from.

It's surprising how much damage one person can do with a few insensitive comments
 

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