ALONE

mikeb2

Registered User
May 17, 2022
221
0
Been just over a year ago I was diagnosed with LBD -consultant gave me a scrap piece of paper with the words LBD scribbled onto it a a telephone number for my wife to ring up someplace? and then I walk away with a stunned silence to catch the bus. Since then more or less to get on with it- Im having now to look on YouTube for others experiences of the disease , tried to talk to GP but he look at me like I don't know what to do or say . at the beginning had a young lady from dementia services phone me up but that long stopped and now I have nobody to ask or talk to when I feel so alone and anxious. hopeless it goes on etc , even my family think its something that- I get over or don't talk about it and it will go away, all expect me to carry on like nothing happening- Im trying so hard to not show any emotions and to carry on has normal, go to work has normal etc- I dont know how long I can go on , I rely on notes to get me though each task, I hear and see things that I not are not real but I say nothing because family cannot understand , my sleep patterns getting worse, dreams so vivid and im getting so tired, I ould write so muh more but getting hard to put my experiences on here and get so confused after awhile , guess other like me have the same experience
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,811
0
Been just over a year ago I was diagnosed with LBD -consultant gave me a scrap piece of paper with the words LBD scribbled onto it a a telephone number for my wife to ring up someplace? and then I walk away with a stunned silence to catch the bus. Since then more or less to get on with it- Im having now to look on YouTube for others experiences of the disease , tried to talk to GP but he look at me like I don't know what to do or say . at the beginning had a young lady from dementia services phone me up but that long stopped and now I have nobody to ask or talk to when I feel so alone and anxious. hopeless it goes on etc , even my family think its something that- I get over or don't talk about it and it will go away, all expect me to carry on like nothing happening- Im trying so hard to not show any emotions and to carry on has normal, go to work has normal etc- I dont know how long I can go on , I rely on notes to get me though each task, I hear and see things that I not are not real but I say nothing because family cannot understand , my sleep patterns getting worse, dreams so vivid and im getting so tired, I ould write so muh more but getting hard to put my experiences on here and get so confused after awhile , guess other like me have the same experience
Hello @mikeb2 I am so sorry that you are not getting the support that you need either from the GP or your family. Unfortunately LBD is one of the dementia’s that people do not understand. Like you my husband has LBD and also has the vivid dreams and occasional hallucinations. It really is quite frightening for you to go through.
Are you on any medication, it will not cure the LBD, nothing can do that, but it can help. If you are not on any medication ask your doctor to refer you to the memory clinic for a medication review.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,710
0
Kent
This is awful @mikeb2

I'm afraid most GPs are sadly lacking in knowledge of dementia a dementia support.

Perhaps you could return to your GP and ask to be referred to a consultant who might give you more time.

I wonder if to would improve your family`s understanding if they came on Talking Point too.

Perhaps these links might offer you something.


 

mikeb2

Registered User
May 17, 2022
221
0
Hello @mikeb2 I am so sorry that you are not getting the support that you need either from the GP or your family. Unfortunately LBD is one of the dementia’s that people do not understand. Like you my husband has LBD and also has the vivid dreams and occasional hallucinations. It really is quite frightening for you to go through.
Are you on any medication, it will not cure the LBD, nothing can do that, but it can help. If you are not on any medication ask your doctor to refer you to the memory clinic for a medication review.
I am on Rivastigmine 9.5 and now Im getting a nurse from the memory clinic (first time ) to come and see me next week to check on my mediation, Went to the city this week and met to old work colleagues - they ask how I was and soon has I told them about my condition- I never seen someone move so fast and to reply nice to see you smiling and see you later- is it me who picking this up and over doing it
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,811
0
I am on Rivastigmine 9.5 and now Im getting a nurse from the memory clinic (first time ) to come and see me next week to check on my mediation, Went to the city this week and met to old work colleagues - they ask how I was and soon has I told them about my condition- I never seen someone move so fast and to reply nice to see you smiling and see you later- is it me who picking this up and over doing it
Hello again @mikeb2 I am pleased that you are seeing the nurse from the memory clinic next week. It’s always good to let them know how you are doing and feeling.
That is so sad that your old colleague did not spend more time with you. Unfortunately people do not always know how to speak to someone with dementia.
Take care.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,710
0
Kent
they ask how I was and soon has I told them about my condition- I never seen someone move so fast and to reply nice to see you smiling and see you later-

That is so sad.

I wonder how they would feel if they had a diagnosis. Nobody knows what`s around the corner.

At least you have us @mikeb2
 

Watson1

Registered User
Sep 4, 2023
78
0
Mike been reading of your situation are you finally getting some support there are a lot of us in the same boat world wide.we are all here for you. Watson1
 

mikeb2

Registered User
May 17, 2022
221
0
Mike been reading of your situation are you finally getting some support there are a lot of us in the same boat world wide.we are all here for you. Watson1
Where we live there is absolutely nothing- Asked his memory nurse who also said there is nothing- may ask a near by dementia home if they have meetings -but most there are the older generation- so not really suitable for my OH- we are very much alone
 

HardToLetGo

Registered User
Oct 10, 2020
87
0
Where we live there is absolutely nothing- Asked his memory nurse who also said there is nothing- may ask a near by dementia home if they have meetings -but most there are the older generation- so not really suitable for my OH- we are very much alone
 

Chaplin

Registered User
May 24, 2015
354
0
Bristol
@mikeb2 dementia can be a lonely place for those living with the diagnosis and their immediate family. Unfortunately many of us have to search out our own support as you’ve already experienced.

Can I ask, have you notified your employer of your diagnosis? If not, you need to speak to your line manager and arrange an appointment with a senior member of your Human Resources Team/Personnel. Depending on your job, they should arrange for you to see an occupational therapist to assess what measures they can put in place to help you stay at work as long as possible. Use this as an opportunity to ask if they can offer any emotional support too. People assume you are coping unless you tell them otherwise.

It’s a good idea to build a relationship with care homes near you as some offer respite on a day basis.

I’m sure you’ve googled dementia services near me on the internet but if not you might be surprised where the support may be. Look for things like Men’s Sheds which are community spaces for men to meet in a safe space to improve their health and well being.

I’m appalled at the lack of care you’ve received from the medical staff, keep asking for help or they will assume you are another person they don’t need to worry about.

If you’ve not already sorted things like Power of Attorney, your Will etc. then do this while you can make it clear what your preferences are.

Hope this is of some help and apologies if you’ve done all this but telling your employer is really important as they are legally responsible for making reasonable adjustments to help you continue working as long as possible.
 

mikeb2

Registered User
May 17, 2022
221
0
@Chaplin -thankyou for your kind thoughts- referring to my employers -yes they are well aware of my diagnosis and some of my colleagues - I speak of my illness has much has possible to help them get a picture of someone like me and my struggles -sadly though my employers doing their best to help in one hand- really struggle to understand what dementia really is and the impact it has in another hand- no one not wanting to talk about it-and i get the feeling soon has i slip up the finger will be pointed to state -he lost it and down the capability route we go- so to my management though I like to talk about it- I feel if I say too much again the lack of understanding shows . so in the end I only say what I think they can handle without them pointing the finger- One example is at work I use the stairs to go to my office but at times it gets rather scary because the stairs distort in my mind sometimes they totally disappearI- how can one discuss this without them feeling overwhelmed- I could go on but Im getting tired now but I will continue this topic
 

Watson1

Registered User
Sep 4, 2023
78
0
Frustration and loneliness are big issues and people seem to be of little help so so unfortunately true. Im an artist so working on art take me to another plane of thoughts even jumbled helps paper can always be thrown away. I just got the book Somebody i I used to know by Wendy Mitchel out of the library the story of her live in dementia. Im hoping Reading of others adventures in this hard struggle may give me a different insight. I got my bike out after not riding for years i have lung issues so that is interesting i gain little every day the change of venue gives my frustration a break. I am a buddhist and some buddhist theroies about life are useful. I hope you find ways to help your self. And never forget even though you may only now of us in a limited way we listen and we listen well .And if all else fails take your old wandering self out for a walk in the fall air maybe someone will be out to just as lonely as you. I sometimes will give a little wave and say hello.Sometimes a simple hi will lighten the burden. opps here i go caught myself rambling again........
 

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