I suspect my father may be struggling with dementia...

AztecCamera87

Registered User
Mar 12, 2019
204
0
Hi Everyone,

First time posting, I'm you've heard similar concerns and stories many times over, I just wish to get some advice or perhaps for my concerns and worries will be simmer down. Who knows, I may just be getting anxious and worried, but from what I have read, I think I may be on the right track.

My dad is relatively young, early 70s, but is pretty unhealthy compared to others his age. He had a minor heart attack in his early 50s, has type one diabetes, in his early 60s he broke his hip in a cycle accident and it has never been the same again, he now has to walk with a walking stick. He has always had a poor short term memory and we once all used to joke about it.

However, his memory problems have got worse over the past couple of years. We constantly need to remind him about events and dates and need to write down notes for him on his notepad. He is also getting confused with electrical products like the oven and television, and tend to blame it on the things not being responsive or the cooker being confusing. 9 times out of ten, it will be down to human error. He has on two occasions in the last few months unplugged the fridge and freezer, because they were just too loud (in his defense, that buzzing can get a little annoying from time to time), but then forgot and left them unplugged for several hours until someone else noticed. Also, his fine motor skills have started to get worse and worse, I often have to ask him if I can help get his pills ready for him, mostly he says no, and I will let him get on with it, but he will drop things on the floor and struggle. His handwriting, while eligible, has been slowly getting messy. Also, even with the hip, he has become more iffy on his feet. His speech gets slurred quite a lot, and he can never really remember the right words and can struggle to be clear.

about 6 months ago, his wife of nearly 50 years died after a long battle with cancer. This obviously hit him very hard, but it seems problems have just got worse. After a whole helping of nagging and a lovely letter me and my sister wrote, he went and spoke with his GP, after insisting for a while that there were no problems. After speaking with the doctor, the GP diagnosed him with depression, which yes, does make sense. But it seems the doctor has failed to take into account certain symptoms we mentioned. My dad insists that the test they did with him to check his memory was a series of questions about what day it is, who the monarch was etc. This does not seem at all thorough.... but what do i know.

We constantly worry about him, He is also starting to look much older, his skin has a tone of grey, he has lost a lot of weight over the least couple of years (he gets weighed by the diabetes team, they dont seem worried though). He is struggling to lift objects he once could only 6 months to a year ago. His eating is fine, and luckily, the very regimented structure of his meals and medication has not been a problem for him and he has been on top of it. He often sits in his chair with a glazed look in his eyes, but this may be the anti-depressives. He has also started peeing himself at night time maybe 2 or 3 times a week (he insists this is not the case, but we can smell it in his room, and why else would you be washing your bed covers at 6:00 in the morning.

Anyway, sorry for the long message, please can anyone offer help. Am i just being overly anxious and it's the depression, diabetes and old age. Or am i being right here? Should the GP have given a more intensive test before diagnosing him with depression? Because this doesn't seem right to me.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,795
0
Kent
Hello @AztecCamera87 Welcome to Talking Point.

My husband was diabetic and our GP treated him for depression for a year before he sent him for a brain scan where he was diagnosed with Alzheimer`s.

I think GP`s have to rule out all other conditions before they acknowledge dementia may be the problem.

There seems to be a link in some people with diabetes and dementia but not all, which is why the GP has to explore every possibility first.

It doesn`t mean his decision is final. Please continue to consult with the GP until you get a satisfactory diagnosis. I started to keep a log of my husband's memory lapses and behaviours, just over the course of a few weeks. All entries were logged and dated so the GP understood the frequency of concerns. Perhaps this may help you.

The GP may not choose to discuss your dad with you but they will listen and acknowledge the entries in the log.
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
So, the latest is my dad is in hospital. He has been increasing getting iffy on his feet and on Monday morning had a fall getting his newspaper. He was taken home by sonsome from the paper shop. He went to a&e a bit later, after phoning my sister at work. He didn't want to go, but couldn't walk. He was discharged a few hours later, but after a painstaking evening had a hypo in the night. I called an ambulance, and went with him to a&e. I went home to sleep in the morning. But he was still in a&e after 16 hours. He has been in a ward since then. They are worried as he has been very confused since. He has been forgetting why he's there and forgetting where he is. Keeps trying to walk and had a fall after getting up from his chair. It's worrying. But on the other hand they are going to do a dementia screening/test and also get a care plan in place before he's allowed home. So maybe in some ways it's a blessing in disguise.
 

Banjomansmate

Registered User
Jan 13, 2019
5,462
0
Dorset
It sounds as though this could be the best thing to happen for your Dad as hopefully he will get a proper diagnosis leading to support at home if necessary. At least he hasn’t had to suffer a broken hip in the process!
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
I'm finding it quite hard to cope right now. I've read a lot recently about hospital delirium, which perhaps he's struggling with. But I find it so hard when I speak with him about anything to which he's confused with and gets angry with me and then as soon as a health professional comes along and speaks to him about the same thing, he's coherent and responsive with them. I just have to bite my tongue. The health care assistant was very lovely today, while I was outside the ward she took me to one side and said Its ok to be upset, she finds this happens a lot, and I shouldn't take it personally. Today he was asking me why I don't come and see him, I've been there everyday except one (my mum's dads funeral). He said "your brother comes and says hello most days" neither of my brothers have visited (one lives far away and works three jobs, the other may have made more effort but does have a kid) so I cant help but feel in my head he's just being nasty for the sake of it at times.
 

canary

Registered User
Feb 25, 2014
25,078
0
South coast
No, he isnt being nasty just for the sake of it - he is confused and misremembering.

This ability to suppress their symptoms when faced with a health professional is well known on here - it is known as "host mode". It is done subconsciously and, personally I think it is probably a basic survival instinct. They can only do it for short periods of time and leaves them exhausted afterwards.

Even knowing all of this doesnt make it easy, though.
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
So, today was a difficult day. After a long day of work with train problems on my way home. I get the hospital at 7. I spoke with a man who is there everyday with his sick brother, he tells me that dad has been confused, he's having a shower but told him to tell him when I arrive. Dad took his wallet in the shower with him and ruined it, so I took his backcards and money home with me and had to throw away the wallet as it was ruined. He was getting upset as he said he hadn't had dinner. I spoke to the nurse, he had eaten at 5:30. The nurse speaks to us, dad says yes he did eat, it was lovely. And when she leaves, tells me, "see, I haven't eaten yet".

He then tells me he's going home tomorrow, the doctor says he can. We haven't had any warning and the home isn't ready. Im also working late tomorrow. So who knows. He also starts getting angry with me, telling me it's my fault he's there and I'm telling lies and turning people against him. He doesn't realise it's been two weeks, nor does he understand how serious his health is right now.

I feel bad but I did bite. I told him, he's been here for two weeks, and I've been visiting him everyday (well, except one) and have been working hard to make sure the house is safe and working full time. And told him, I love him, but wish he took his health seriously.

The hospital do want to discharge him soon and he wants to be discharged, but I feel he's going to hurt himself when home. I am so worried.
 

charlie10

Registered User
Dec 20, 2018
394
0
Hello @AztecCamera87 ......I understand your worries, your dad sounds rather similar to my FiL.....not diagnosed but showing signs, still has capacity so we can't make any decisions for him, and worried about him sent home with very limited mobility to live on his own with just carer visits (if he agrees to them :rolleyes:). He doesn't seem to be as forgetful as your dad, but BiL reports that he is very often irritable and ungrateful, so visiting can be a minefield. All I can suggest is that you refuse to take responsibility for him when he is home and insist on a Needs Assessment with the medical staff/SW etc before he leaves. I think an OT should also be assessing his home and supplying aids before he gets there. I'm sure others will be along soon to advise too....I haven't got the practical experience of this yet, but it may be coming up :( Good luck, I hope your dad can be discharged so that he is safe and comfortable and that he agrees to it......btw do you have LPA? We're just in the 'persuasion' stage....need to get it while there's still capacity
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
Hello @AztecCamera87 ......I understand your worries, your dad sounds rather similar to my FiL.....not diagnosed but showing signs, still has capacity so we can't make any decisions for him, and worried about him sent home with very limited mobility to live on his own with just carer visits (if he agrees to them :rolleyes:). He doesn't seem to be as forgetful as your dad, but BiL reports that he is very often irritable and ungrateful, so visiting can be a minefield. All I can suggest is that you refuse to take responsibility for him when he is home and insist on a Needs Assessment with the medical staff/SW etc before he leaves. I think an OT should also be assessing his home and supplying aids before he gets there. I'm sure others will be along soon to advise too....I haven't got the practical experience of this yet, but it may be coming up :( Good luck, I hope your dad can be discharged so that he is safe and comfortable and that he agrees to it......btw do you have LPA? We're just in the 'persuasion' stage....need to get it while there's still capacity
My dads mood changes from giddy and smiling to angry and irritable. But at least he is always nice and agreeable to the nurses and doctors. I think he knows he has to be to go home. We don't have LPA, but me and my sister are going to have this discussion once he returns home, we think he will improve a bit in a familiar environment. He has seen the OT and told them my sister is his carer (she's not!). But they called her and set everything straight. We are having railing installed on Monday, and other bits delivered. We have turned the downstairs into a bedroom/living area so he has to never use the stairs again
 

imthedaughter

Registered User
Apr 3, 2019
944
0
I sympathise. My dad tells people that I am going to call him, or that I spoke to him yesterday etc, or that he's only just moved in, when the reality is he moved seven months ago, and I do call his switched off mobile everyday, but obviously he doesn't know about it. I am still waiting on test results for a diagnosis before they refer him to memory team. Also he had one of those tests at the Drs and passed with flying colours but it was an effort. Day to day he seems very confused. Everything seems to take so long too!
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
Dad is still in hospital, but he's looking well, and the anger has subsided. To be honest, I'm surprised he hasn't been discharged yet, the diabetes are now under control and he has got a bit more mobile, going to the toilet with the zimafrzrame, but still having the odd accident. I hear so many horror stories, but they seem to be waiting for care and accessories to be in place first. His memory is still all over the place, but he seems to be getting a bit better with the faking it / coping mechanisms, although he got upset he lost his pincodes (we were unaware he didn't know them, but makes sense really, it was on a bit of paper in his wallet he took into the shower).
 

charlie10

Registered User
Dec 20, 2018
394
0
@AztecCamera87 glad your dad is still in hospital, hope it gives you time to get all the new stuff organised before he gets home. We found that the long stay did wonders for FiL's appetite (the hospital food arrived without effort and was tasty :) at home he'd almost given up eating and became very thin and weak) and also was very helpful for healing his leg ulcers (stern nurses insisting he kept his legs up!). We're beginning to see more behavioural signs, but don't know if that's cos he was such a recluse no one saw him before, or if he has actually got worse in hospital. He has unshakeable views on where he wants to go on discharge, and has agreed to have carers as that was the reason he was being allowed to go home, but he is paying for them and it's not impossible he cancels them. His living/sleeping area (also downstairs) to be sorted over the weekend and hospital bed being delivered on Monday.....I'll be thinking of you doing the set-up too!
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
Sadly, dad won't be coming home this week, just when things were getting under control, and everything was getting in place, his blood sugar levels have just gone and spiked randomly. They've put him on an insulin pump.
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
:( hope they can get him stabilised and home quickly
My dad was discharged yesterday, took the day off from work, however turns out despite the hospital reassuring my sister the carers were in place, they weren't. But we had him sorted and in bed by 10pm. My sister ensured he had breakfast and his medications were all taken this morning, we left food for him to eat for lunch while we were at work. He was just happy to be able to watch his tele shows last night. But his short term memory is so bad, and will just agree to things with out understanding what we're saying, he was unable to do various tasks he could do before going to hospital and needed assistance with everything. We both feel completely out of our depth with everything. I wish my dad hadn't always been so secretive about his medications and etc.

Anyway, he's been sent back to hospital today by the District Nurse who came to visit him late morning, his ketones were high and blood sugars were pretty high, she felt he shouldn't have been discharged, he's also incontinent, with no real supplies. So he's back in A&E, I will go see him after work. I just hope they won't just send him home again too soon.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,356
0
Nottinghamshire
I hope the hospital don’t try to send your dad home again until he’s been properly assessed and carers are in place.

Do you think he’ll be safe at home on his own even with carers?

It may be worth speaking to the hospital’s PALS service or social worker to find out what’s going to happen and how your dad is going to be discharged safely next time given what happened before.
 

charlie10

Registered User
Dec 20, 2018
394
0
Glad your DN was on the ball and reacted promptly.....hope you can get a proper needs assessment for him when he's ready to come home. Struggling with FiL who seems to be getting worse since he came home.....he was desperate to get there but I suspect he is missing the stimulation of having people around. We have, however, managed to get him to sign the LPA, and he has a Memory assessment tomorrow (extremely quick, I'm gobsmacked.....can only think that it's because they wanted input from OH and he flies home the next day) so we feel that at least that end of things is improving!

Hope your dad settles ok when he's discharged, and good luck with the organising
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
One of the diabetes nurses from the hospital called my sister this morning, and made her very upset. She called to ask why there was no care in place for dad (the hospital had told us, they had arranged it and it was in place before he was discharged). Apparently, they have now gone from cutting back on his insulin on discharge from 3 times to 2 times a day to saying he needs it 4 times a day.

The diabetes nurse on the phone kept pressuring my sister to agree she or me would do his insulin and medications in the evenings, my sister explained that we both have partners and spend some evenings/nights with them (my partner also has health issues which I help out with, despite not living with her) and are not always around at night times etc, the nurse then said that, so you can't do it because your dads health is an inconvenience to you (can you believe that!). My sister then explained it all again, to which the nurse said she would write it was an inconvenience for us to administer medication in the evenings. Like seriously, it's unbelievable, we have been lied to by the hospital and made to feel like we are somehow bad people for not being able to care for dad.

I had to make an emergency appointment with my GP before work this morning, as I am seriously struggling mentally to work full time in Central London, be there for my girlfriend and be there for my dad. and now we are being made to feel that it is on us to be carers for dad.

The diabetes nurse also told my sister that his blood sugars were at 40 when the district nurse came to visit. Why the hell was dad discharged? He is not mentally capable of being by himself all day without help in place, he obviously was not in a state to go home (the day before his blood sugar went down very low and he was given glucose boost in hospital.

We still not have heard of any memory clinic referral.

It's all becoming a nightmare.
 

jugglingmum

Registered User
Jan 5, 2014
7,110
0
Chester
You need to make a formal complaint about that nurse. Her attitude is disgusting, sadly I've come across many health professionals with poor attitudes like that, although not with my mum's care, but myself or my kids - several of which have been really upsetting and led to poor sleep.
 

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