Quick Question: Did the falling, and hitting his head, show up any signs of brain damage? What was the diagnosis?
Question Time for Carers... Week 2...Only 1 Question?
- Thread starter NotTooLate
- Start date
Quick Question: This blindness is a strage one and just because the medical proffession did find anything, doesn't help! There must have been something wrong!
Did this happen shortly before symptoms related to dementia started to be noticed?
Quick Question: You have been diagnosed and living with this for 15 years? Your dementia is FTD?
Quick Question: Was she active before and did she stop doing anything... knitting, puzzles etc? It sounds like you are doing a great job and really please you both can enjoy a good laugh... it makes a big difference!
Money and Care... they shouldn't be together, but greed is a terrible thing! Making money out of your loved ones, turning them into a profit margin, providing as limited a service as possible, for as much as they can make! As you can tell, I do not agree with the private sector in care!
To all that have given their precious time to reply, a big thank you!
You will have noticed that I have made a few quick replies, but this is not because I didn’t want to reply to all messages. It is because, I’m happy to say more are taking part! Hope you understand!
Stay Safe and Keep Well!
You will have noticed that I have made a few quick replies, but this is not because I didn’t want to reply to all messages. It is because, I’m happy to say more are taking part! Hope you understand!
Stay Safe and Keep Well!
Hi My friend if your asking was I dignosed with dementia 15 years ago well the answer is almost 21 years ago it was November 1999
Hi @Countryboy
Wow! The reason I asked, a doctor told me that the average time of life expectancy, after diagnosis, is 5 years. This did floor me at the time. He had no way of knowing what was going on inside of me. This was some arbitrary figure, based on some meaningless data and he was wrong! So, you prove my point and give hope to me and many, many others!
It is time we start living with dementia and not just waiting to die with it!
Stay Safe and Keep Well!
Wow! The reason I asked, a doctor told me that the average time of life expectancy, after diagnosis, is 5 years. This did floor me at the time. He had no way of knowing what was going on inside of me. This was some arbitrary figure, based on some meaningless data and he was wrong! So, you prove my point and give hope to me and many, many others!
It is time we start living with dementia and not just waiting to die with it!
Stay Safe and Keep Well!
Results so far:
| Seizure | 2 |
| Fall | 3 |
| Blow to the head | 4 |
| Accident | |
| loss of a loved one | 2 |
| Illness | 1 |
| Heart Attack | 3 |
| Mental illness | |
| Drugs issue | |
| Drink issue | |
| Depression | 3 |
| None | 4 |
| Infection | 1 |
| Stroke | 2 |
| Severe Pain | 1 |
The reason I joined talking point was what happened with my wife, she had always had huge mood swings to the point that I took her to a psychiatrist in 1975 but he could not find anything wrong. In 1976 her nana who had brought her up passed and she did not get a chance to see her and was upset but in 1977 when her nan's house was sold she had a nervous breakdown because that meant it was true her nan was passed. This lead to being on anti depressants for a short time but then the GP put her on Ativan on repeat prescription, a terrible drug worse than heroin to come off, she managed to get herself off but it took six years and left her with a sleep problem.
She still had the mood swings and unpredictable behaviour but in 2017 Christmas we went out in the car with a packed lunch as we did most holiday times, we got to the lakes ate lunch and she asked to go to the shops, she had forgotton it was Christmas, this is what made me sure it was serious and I joined talking point posted for a while with the title "not sure" as I was not sure what it was and the many kind replies helped me to realise it most probably was some kind of dementia. Tried to get her to go to the GP for a test but she would not go so never confirmed then in February this year she had a fall and broke her arm and was taken to hospital, she should have been discharged the same night but was unable to stand and was kept in, they did a CAT scan but she refused an MRI, the psychiatric team thought she was delusional, I could see she was much worse than before the fall, she had gone from someone who could get showered and dressed and go out with me in the car to someone who was almost bedridden and not eating.
She was transferred to another hospital later and to a nursing home last week of course no visiting.
As to what caused her problems the Ativan did not help, those chemicals had some effect on her brain, her mother was on the stage and I believe quite a social drinker which can give children problems.
As to the length of time I am shocked it is only two and a bit years from when I got worried to her being in a care home, I can not see her improving now, they may send her home when this virus is over but will need carers, hope some of this helps with your search, stay safe.
She still had the mood swings and unpredictable behaviour but in 2017 Christmas we went out in the car with a packed lunch as we did most holiday times, we got to the lakes ate lunch and she asked to go to the shops, she had forgotton it was Christmas, this is what made me sure it was serious and I joined talking point posted for a while with the title "not sure" as I was not sure what it was and the many kind replies helped me to realise it most probably was some kind of dementia. Tried to get her to go to the GP for a test but she would not go so never confirmed then in February this year she had a fall and broke her arm and was taken to hospital, she should have been discharged the same night but was unable to stand and was kept in, they did a CAT scan but she refused an MRI, the psychiatric team thought she was delusional, I could see she was much worse than before the fall, she had gone from someone who could get showered and dressed and go out with me in the car to someone who was almost bedridden and not eating.
She was transferred to another hospital later and to a nursing home last week of course no visiting.
As to what caused her problems the Ativan did not help, those chemicals had some effect on her brain, her mother was on the stage and I believe quite a social drinker which can give children problems.
As to the length of time I am shocked it is only two and a bit years from when I got worried to her being in a care home, I can not see her improving now, they may send her home when this virus is over but will need carers, hope some of this helps with your search, stay safe.
Hi @dogdayafternoon
Thank you for your interesting post!
I hate drugs and now slowly, with my GP’s support, slowly trying to come off as many as possible. I will come off them all, if I can. I’ve done over six months coming off morphine and now stuck trying to get off Gabapentin.
You mention, Ativan, or as I know it, Lorazepam. This is one of the many drugs I take daily and another challenge that awaits me in coming off.
The trouble is, I have no idea what they do, or how they react with each other and more worrying, the doctor’s don’t know either. It is more a case of trial and error!
What I do believe and have directly experienced, is drugs have a profound affect on your brain and you. This should not come as a surprise to anyone. So, if you are taking drugs that are affecting the neurotransmitters, how the signals travel thoughtful the brain, then there can be no surprise that you may be having problems remembering, or you are unable to function as you did. Imaging a telephone system that has something put into it that blocks, slows, or redirect the signals.
Do you think your Wife knew there was something wrong, or just denying it?
The fall and broken arm doesn’t seem to have help and something I hear more. I think the physical inability to something, causes you to start shutting down. When it doesn’t look like there is any chance of this getting better, or that is what you believe, it seems just to get worse.
Stay Safe and Keep Well and hopefully soon you will be able to be together.
Richard
Thank you for your interesting post!
I hate drugs and now slowly, with my GP’s support, slowly trying to come off as many as possible. I will come off them all, if I can. I’ve done over six months coming off morphine and now stuck trying to get off Gabapentin.
You mention, Ativan, or as I know it, Lorazepam. This is one of the many drugs I take daily and another challenge that awaits me in coming off.
The trouble is, I have no idea what they do, or how they react with each other and more worrying, the doctor’s don’t know either. It is more a case of trial and error!
What I do believe and have directly experienced, is drugs have a profound affect on your brain and you. This should not come as a surprise to anyone. So, if you are taking drugs that are affecting the neurotransmitters, how the signals travel thoughtful the brain, then there can be no surprise that you may be having problems remembering, or you are unable to function as you did. Imaging a telephone system that has something put into it that blocks, slows, or redirect the signals.
Do you think your Wife knew there was something wrong, or just denying it?
The fall and broken arm doesn’t seem to have help and something I hear more. I think the physical inability to something, causes you to start shutting down. When it doesn’t look like there is any chance of this getting better, or that is what you believe, it seems just to get worse.
Stay Safe and Keep Well and hopefully soon you will be able to be together.
Richard
Aw - thank you. Like everyone here I know there are days I could do better - a lot better, particularly with patience - but so far so.....ok!! Before diagnosis she was very active - a retired teacher, she was working part time as a PA for years & we had already had the MCI diagnosis when her boss rang me to say he was really concerned. For example, she could remember going to the theatre & tell him she'd been, but couldn't tell him the name of the show when he asked. She also lost a lot of her office skills (using the printer & PC) & she herself would tell me that she sometimes sat, looking at the PC, thinking "Now, what do I do..?". His call, which confirmed my own concerns that things were gradually progressing, prompted me to drag her (reluctantly) back to the GP for a re-referral to the memory clinic where she was eventually diagoosed. She loved reading & crochet but gradually stopped doing both. She still reads a paper though. She accepts that she has a 'little bit'of dementia 'but not much!'. She's still OK but now asks more regularly where her room & the toilet are, where I sleep & as I gather is common, thinks perhaps she should 'go home' but I've so far managed to reassure "You've lived here 20 years!" & she'll say "Oh yes" or "of course". Really grateful for this forum as still a bit stupefied that the memory clinic gave us the diagnosis then discharged us to get on with it! It wouldn't happen with any other condition. I've also had to fight to stay in hospital with her during 2 emergency pacemaker surgeries - whilst I know she isn't a child, in my view she is as emotionally & physically vulnerable & I know hospitals do everything for children & their parents! Of course they should do so, but they should for those living with dementia too. Understanding would be great!! Love that you're doing this research - take care & stay safe (everyone!) xx
Hi NotTolate life expectancy after a diagnoses of Dementia depend on several obvious factors (1) your age at time of Diagnoses (2) Type of Dementia (3) any other underlaying illness related to dementia (4) or Other health / medical issues unrelated to dementia personally I had both parents who had dementia lived for well over 20 years with it but both died of Cancer also Mum’s Brother & Sister again had dementia for several years they died from other health issues by the way they were all aged between 85 & 94 so don’t worry about statistics
My OH was already showing signs of short term memory loss and confusion, usually in the evenings. Then he tripped and fell, breaking and dislocating his elbow. His elbow was shattered and not replaceable like a knee or hip, but he was progressing fine, until one day we were leaving the house to go to a GP appointment, when he collapsed in the doorway and couldn't get up. GP came straightaway and thought (as I did) that OH had had a stroke but later tests proved he had not. We had months of him being unable to walk, in a wheelchair, etc. He was referred to weekly rehab, where he regained mobility but was diagnosed with mixed dementia - Temporal Lobe with Alzheimer's. It has been downhill from there on.
I am firmly convinced that my mum's dementia, in her case Alzheimer's, was bought on by isolation and loneliness.
Mum grew up in a large family and had a large family after marriage. She always had lots of friends, worked and taught many crafts.
After retirement, following pressure from a family member, mum and dad moved from one side of the country to the other. As soon as they moved, the family member abandoned them, they had no neighbours and because dad was housebound, mum was tied to the house, unable to make friends in the community. The only regular visitors were district nurses who oversaw dad, it was so sad to hear mum talk about the nurses as if they were her friends.
She kept herself busy with the house and garden and looking after dad but graduallyy my lovely kind-hearted, extrovert mum had her spirit broken and slowly gave up.
We visited three or four times a year and the change in her behaviour was noticeable but we were unable to do anything as her attorney blocked us at every move.
Over time she gave up her crafts and hobbies, stopped writing to old friends and even stopped writing to me. After dad died, mum decided to move, temporarily in with us which turned into permanency.
Mum was diagnosed with AZ in 2017; she takes Donepezil and since the move her health has improved vastly, I think because she is part of a large family again. She won't ever go back to how she was, her crafting/cooking/life skills are gone for good but she has company 24/7 and says she is content.
None of mum's siblings or her parents displayed dementia and we have always thought 100% for sure, loneliness was the instigator of mum's dementia.
I hope this helps.
Mum grew up in a large family and had a large family after marriage. She always had lots of friends, worked and taught many crafts.
After retirement, following pressure from a family member, mum and dad moved from one side of the country to the other. As soon as they moved, the family member abandoned them, they had no neighbours and because dad was housebound, mum was tied to the house, unable to make friends in the community. The only regular visitors were district nurses who oversaw dad, it was so sad to hear mum talk about the nurses as if they were her friends.
She kept herself busy with the house and garden and looking after dad but graduallyy my lovely kind-hearted, extrovert mum had her spirit broken and slowly gave up.
We visited three or four times a year and the change in her behaviour was noticeable but we were unable to do anything as her attorney blocked us at every move.
Over time she gave up her crafts and hobbies, stopped writing to old friends and even stopped writing to me. After dad died, mum decided to move, temporarily in with us which turned into permanency.
Mum was diagnosed with AZ in 2017; she takes Donepezil and since the move her health has improved vastly, I think because she is part of a large family again. She won't ever go back to how she was, her crafting/cooking/life skills are gone for good but she has company 24/7 and says she is content.
None of mum's siblings or her parents displayed dementia and we have always thought 100% for sure, loneliness was the instigator of mum's dementia.
I hope this helps.
Hi NotTolate.
I don’t know if you noticed that people never give one bit of important information when discussing Dementia that’s the age at Diagnose and the age Today I was 56½ when first diagnosed with Alzheimer’s and 60 when diagnosed with Frontal-temporal-dementia I’m now 77 when you know the persons age you can put into perspective
I don't think there was anything significant before mums symptoms started. I think she was lonely and a bit depressed but nothing major happened. I noticed the symptoms after her being diagnosed with macular holes and catartacts but then realised she'd probably been showing symptoms bit before that I'd put down to normal ageing and being bit down and lonely.
Hi @Lizbuff
Apologies to @NotTooLate for taking a detour ...
Below is the link for a fuller explanation, but the shorthand version is to allow carers to stay with their PWD in the same way that parents can with children
I used this when mum was admitted, staying with her from 10.00 to 17.00 every day, it meant I could get her to eat, drink and relax.
Ask on the ward if they are aware of “John’s Law Campaign“, even the Trusts that are signed up to it are generally unaware of what it means. If you have internet access, search the Trust website to see if they mention it and then tell the ward they are supposed to be aware
The first day, I wrote a note with the web site address and asked them to look it up. The next day I printed off a hard copy and left it at the nurses desk, referring them to it every time I was told I needed to leave, or that visiting time was over
Hospital admissions are hard enough, but this helped both mum and myself
John's Campaign
John's Campaign: for the right to stay with people with dementia; for the right of people with dementia to be supported by their family carers.
