Hi Sue,
No i cant afford carers coming in to go away, especially as im paying for my councelling privately and its ongoing at the moment as i have had depression a long time, having said that i dont fancy strangers coming in really, theres not much hope for us is there. Im not entitled to carers allowance due to being retired myself and getting pension.
Phil is quite young really to go through all those things and it must have been a real shock, you are young too, do you find going to work helps or is it a chore? I hope it gives you abit of time for yourselfâŠi was working uo to 4 years ago but got made redundant towards end of covid after working through most of it at a large ChemistâŠi wasnt too upset as retirement was in couple of years then but i never expected it to go this way. It started off well i did abit if travelling to Devon and was enjoying myself then we had the car crash. We are lucky to be alive i know but if anything i thought i would have been affected by it and not John, mentally that is but i was determined to not do that.
I do feel selfish because i feel like my lifes over now hes got like this but i realise i chose to stay.
He was having accidents quite abit in night and i was clearing it up hes started putting light on more now its like he just doesnt think and never seemed to have any respect for me before this even like he expected me to do it, i did tell him but it had no effect.
Im reading a book by Maria Frankland at moment uve just found her books and they are really good. Maybe have a look in Amazon as there are a few. Ive reax a few of James Patterdon as well. I hope you have a better day
Jackie
Are your car insurance company aware of these side effects? Donât miss out on compensation, you have 3 years to claim.
Hi Jackie, thatâs a shame that you canât afford to have carers coming in so you can go away but I understand, itâs really expensive! Do you have a social worker, if so could you talk to them about whether they can arrange and find respite care for a week for you to give you a break?
I find going to work a great help, I never thought Iâd be pleased to go to work 
. When Phil was home it gave me a sense of normality and Iâm lucky that work are really good and I work with some amazing people who really care.
You sound like youâre going through a similar situation to how I was, I also felt my life was over and that the future was very bleak.
Can you speak to adult social services, perhaps they can sort out carers to help you while youâre waiting for his diagnosis?
Are you able to have separate bedrooms so he doesnât wake you so much?
Iâve not read Maria Frankland, Iâll look her books up online.
Hope you have a good day.
Thankyou for replying, there is no evidence as such that the crash caused it the van that actually caused him to crash drove off so Police never caught anyone. I believe the accident caused it.as he has changed but dont know what proof i would need
Jackie
Hello Selina,
Its so hard isnt it and you have had many years of it, we have been together since i was 23 ish and ive just put up with stuff really as i was too weak/unwell in myself to walk away and start again but im paying for it now i think. He started to get ready this morning to come out with me but changed his mind at last minute. Im dreading my future im 67 but never felt it until recently and im not one to give in easily which is why im still here. I can relate to what you said about giving the tablets, thinking he wouldnt be here i have thought all those things too. I dont like idea of strangers coming in plus i have ocd and dont like people coming in with shoes on etc ive been that way for years. So between me and him we havnt much to choose between us. Ive been very close to giving up recently and contacted Samaritans but new tablets have helped that.
Ive worked hard though and was looking forward to retirement.
Why did they discharge your husband, i thought once a diagnosis was made that stayed or didnt he have the diagnosis ever? We are waiting on an appointment to memory clinic and it is my fear he could pass that but i live with him and know. Last night he spoke about my Mum who died 4 years ago as though i was meeting up with her today but its not like that all the time. It is affecting me too though im starting to doubt myself alotâŠ
Thankgoodness for books huh escapism
@Jackie66 My husband is highly intelligent and passed the memory test. Yet the scans showed âmoderate shrinkage of the frontotemporal lobesâ which the Consultant said on the phone indicated Frontotemporal Dementia. I got to speak to him prior to the appointment because my husband was in hospital. But because he passed the tests, they had to discharge him. A few months ago he tried to cook steak and let the pan boil dry so set off smoke alarm. A couple of days ago he tried to make beef soup and left the pan on the electric hob empty - the hob was on full. I have to watch him all of the time. He is mega forgetful too and struggles on the computer to deal with things like amazon as when he tries to âsearchâ often ends up searching in google but does not realise what he is doing wrong. I can get out for short periods but am always on edge wondering what he going to do or say next. He is mega disprutive at the Book Club on occasions and has upset several members and I have know one stopped coming because of how he had spoken to her. I never thought he would make 85. I am a vegitarian so we have always sorted
our own food out. He does have Fortisips. He also had incontinence pads which are a lifeline frankly.
Jackie, my life was ruined due to a car accident. Unable to walk for 5 years, then knee replacement, but 18 years on every joint in my body aches. Hence my regular appearance as a Night Owl. Presumably you had car insurance? Talk to your insurer asap. There are special arrangements for a hit and run, but you must claim within 3 years.
Thankyou, John claimed for the car as it was a write off but that was it. Police were at the scene but we never heard from them again due to van driver not being found. I threw away the paperwork a while back now as hes stopped driving and everything seemed closed, car insurance he paid for year was refunded.
Im sorry you were in an accident too its not until later that things start to ache too
It doesnt make any sense really does it that the scan shows the signs but he passed tests it seems unfair that consultant wont diagnose on the things that he isnt coping with, i dare say im going to find similar when John gets his tests, im starting to write stuff down as i might get overwhelmed with it all. Im a vegetarian too well Johns vegan and im veggie but i avoid milk and cheese too. Im doing all the cooking now as he isnt interested and he used to like that. He just seems to sit in his chair most of day. Ive done abit of garden today and i cut through the wire on our lawn mower its because i was trying to rush its a new one tooâŠsigh
I do hope you do not find the same thing. If you do, maybe you need to write to the Clinic asking them to confirm in writing that John does not have dementia? The Consultant did not send me a copy of the letter he sent to the GP Surgery - not even sure he sent one but he had suggested to both my husband and I that we seek counselling. But privately he had told me to leave. I think the âsystemâ is very rigid as in if someone passes , then they get discharged and there is no âwriggle roomâ. Seems way too âblack and whiteâ for me to understand but it may well be cost cutting? I know years ago my GP did say it was very hard to get someone sectioned and it was partially down to lack of facilities and COST. This was Pre Covid. A friend who used to work as a Ward Manager for a Dementia Ward thought at the very least he would be referred to Geriatric Social Services and I would get some support. But I was told to go back to the GP and he could be re referred after a year which is now. But so disillusioned not sure I can go through it again plus we are at different GP Surgeries so I have to write to his Surgery. Also to even get seen by a Memory Clinic took 7 months.
The medical profession seem to be unaware of the ADVANTAGES of a dementia diagnosis. Entitlement to disability benefits, leading to carers possibly entitled then to Carers Allowance, so no DWP requirement to look for work, and exemption to Council Tax. I was told by a child psychologist that they knew for years that my son had severe learning difficulties but thought it âkinderâ not to tell me! It meant that I was repeatedly blamed for being a âbad motherâ so many times, and offered parenting classes when my eldest son was perfectly behaved and met all his developmental milestones!
@bowlingbun . This is dreadful BB and no way are you a bad mother and how appalling to try and make you think you were. Reminds me when my mother who was trying to care for my late grandparents. I had thought Grandad might have dementia as his behaviour was frankly bizzare. When he died, the GP said that he had had several small strokes but they thought it âkinderâ not to tell his family.
Selinakylie, A lot of social workers seem to have selective deafness and blindness. I told them Iâd been a Brownie leader for years, and ran a pack of 24 girls single handed when we lived 1,000 miles from anywhere in Australia, and my husband had run a Scout troop. Surely that should show we were good with kids?!
Sorry for delay in replying
That sounds very upsetting these people always put blame on parent, i hope everything is alright with
your child now though.
Talking of diagnoses, that seems a bit hit and miss due the questions asked i mean the person might be having better day and get answers correct but we know as we live with them day after day. We have been waiting a few weeks for an appointment to memory clinic .
Im going to go to get some advice from carers place in high street next week i will give them a call first it might be useful
My son is now 45, but I still remember those awful days. Children with an obvious disability were offered respite, not bad mothers! My son went to a special needs class when he was 5, run by a very experienced teacher, kindness personified. When I took M back for the first day of term, Mary looked at me, and ordered me to go to bed, to forget all the jobs, I needed sleep. The first kindness in 5 years.
@Jackie66 My husbandâs GP referred him in October but he did not get the appointment until April which we had to cancel as he was in hospital so he was seen in May last year. It can take months. One suggestion is to try to get through to the Admiral Nurses Helpline. I have been trying but cannot leave a message as dare not speak in front of my husband. I hope I am wrong but it is not easy to get a dementia diagnosis. Has your husband had a scan?
Thats such a long time to wait, the services for depression are just as bad i have no faith in the nhs anymore sadly.
The only tests hes had are the blood tests, urine, mri after the car crash 2 years ago, meant to have endoscope down but first time he forgot and had breakfast before he left the 2nd time he couldnt attend as stuff he had to drink made him quite ill so thats all i think and they were tests to rule out other conditions, did your husband have tests prior to being diagnosed do you remember?
I sympathise over the drink. When I had a scan they decided, without asking me, to give me some that was ice cold. I never EVER drink iced water, I tell bar staff to take out ice if they put it in, and always ask for a room temperature drink. Even when itâs roasting hot I drink tea!
Ooh me to i like tea i usually drink that at home mostly and if im out i will have a cappuccino especially in the hot weather, ha what hot weather
âŠ
ive not heard of the admiral nurses i will google them as not sure what they are about.
I wrote to my husbandâs Surgery as I was worried he was becoming very forgetful and having âoutburstsâ in public. We are at different Surgeries as he left mine when his GP said he was âconfusedâ. They then called him in and did a very quick memory test which he did not do that well at . The GP agreed to refer him and thought the Memory Clinic would do the scan but she then decided to send him for a scan. The scan ruled out some kinds of dementia but showed shrinkage of the frontotemporal lobes. It is not easy to get a diagnosis. In fairness, he did well at the Memory Clinic test.
The Admiral Nurses specialise in Dementia. I think it may be some kind of charity as I think the number are limited. [
What do Admiral Nurses do?
[image]
Dementia UK
https://www.dementiauk.org âș for-professionals âș what-âŠ
](What do Admiral Nurses do? - Dementia UK)
Admiral Nurses are specialist dementia nurses who provide life-changing support to families affected by all forms of dementia.
I have tried to copy a link for you to maybe take a look at?