I Love This Forum But...

[PeteMid]

I have Alzheimer's.

I'm on the slippery slope, but still "compos mentis" enough to participate in forum discussion.
One thing that disturbs me though, is reading the harrowing accounts of carers that pepper this forum and make me despair about the trouble I may be further down the road on my journey into dementia.

Is there any way to seperate the practical advice and discussion amongst sufferers from similar discussions amongst carers?

Sometimes, I am quite distressed by the things that I read, as I do not want to be a burden on anyone

 

[karaokePete]

Hello @Arthur ASCII.

Your post has highlighted one of the reasons I have never encouraged my wife to read/join this forum. She has often expressed the same feelings as you, that she doesn't want to become a burden. I know that she would think the worst if she read too much about dementia.

I tell my wife that nothing is inevitable about dementia and that nothing she does read may happen in her case. I also tell her that she will never be a burden, that she is my wife, that I love her and that always 'I've got her back'. I remind her that the roles could have been reversed and that she may have willingly become my carer in such circumstances.

Please keep posting for support, but don't let imaginings trouble you as they may never come to pass.

 

[Shedrech]

hello @Arthur ASCII
trouble ... I must say I never thought of my dad that way, and definitely not as a burden ... I loved him and my mum, still do, and would have done anything to support them ... were there challenges, yes, and sadly times of distress, but that's part and parcel of life, ... I simply thought of all my dad had done for me throughout my life and, if you want to use the word, how much trouble he had taken from me and for me ... put my looking after him in perspective .... I was lucky, I had kind, caring parents; I hope he felt he had a kind caring daughter ... sounds daft, maybe, but I was proud of how he lived his later years and humbled by how much he trusted me

as to DTP ... your post is in this forum, maybe only read other threads in this forum which is particularly dedicated for those with a diagnosis themselves
though please know that your conftributions to other forums are very much valued

 

[Grannie G]

Is there any way to seperate the practical advice and discussion amongst sufferers from similar discussions amongst carers?

It would be wonderful if it could be done @Arthur ASCII but I doubt even the most sophisticated of systems could enable this.

My husband did not know how to use a computer, nor did he know how to use a washing machine.

He knew about Dementia Talking Point but only what I wanted to tell him.

It was a much smaller enterprise in his day and everyone knew him and knew of him and he was well supported by proxy.

I just want you to know I never considered my husband a burden even though we had many challenging moments and I suppose it was easier for me that he wasn`t computer savvy so I could speak freely and he wasn`t hurt by anything on the Forum.

If you read anything from a specific poster which you find upsetting, you can put that person on your ignore list and perhaps protect yourself in a small way.

 

[marionq]

I’m possibly one of the people writing about difficult times but that doesn’t mean that I ever stopped caring about my husband and wanting the best for him. I just wish that he was capable like you of discussing our situation.

You keep being positive and contributing because we need to hear that too.

 

[Bunpoots]

I never thought of my mum or dad or aunt as being trouble. Like Shedrech I had a loving family and they supported me through childhood and well into adulthood. I was happy to look out for them and do what I could to help, although it saddened me to see them so poorly.

I can see why some of the posts would upset you but I cared for 3 people with dementia and all of them were different.
Try not to think the worst - it may not happen.

 

[Thethirdmrsc]

Hi @Arthur ASCII i do find some of the posts depressing, as it highlights what can be further down the line, for the Carer and the PWD, but like the others, it’s not a burden to look after my husband, and I would never walk away. It could have been me, and as he’s a bit older than me, he wouldn’t manage if the shoe was on the other foot. It’s certainly not a joy either. But I will look after him with dignity and love until I can’t.

 

[Lawson58]

When I check into Talking Point, there are several forums that I don't usually read and rarely contribute to, as I concern myself with those that have relevance for me. I know a lot of people post Poems which are read by many people but not by me and there are other forums I avoid.

Sadly it is inevitable that forums for carers are going to be dealing with uncomfortable subjects so I would like to suggest that when you are on Talking Point, you give those forums a wide berth. There are so many carers on TP and we really do need a place to express our concerns.

None of us want to be a burden as we age and it may not necessarily be dementia that forces us into care. My husband's heart failure requires more caring than his AD and often it is mere frailty that demands care for many. You happen to be one of those facing a big unknown and I wish you well.

 

[Dunroamin]

I understand you completely @athurASCII having been diagnosed earlier this year with Alzheimers. From your moniker I assume you are a computer guy, whereas i am a medic. This enabled an extremely early diagnosis as I was aware of what I was experiencing. This is a triple whammy in a way as services are 1. not geared to me at the moment, 2. people often think there is nothing wrong with me, 3. and I am aware more than most what my future has in store for me.

Neither do I want to be a burden and as a fiercely independent individual this is the most worrying for me. This is reflected in my both my LPA and advance directive documents

I cannot advise you on what to avoid in forums as because I am comfortable reading them all even if I rarely contribute. Keep posting and I wish you well.

 

[DesperateofDevon]

I understand you completely @athurASCII having been diagnosed earlier this year with Alzheimers. From your moniker I assume you are a computer guy, whereas i am a medic. This enabled an extremely early diagnosis as I was aware of what I was experiencing. This is a triple whammy in a way as services are 1. not geared to me at the moment, 2. people often think there is nothing wrong with me, 3. and I am aware more than most what my future has in store for me.

Neither do I want to be a burden and as a fiercely independent individual this is the most worrying for me. This is reflected in my both my LPA and advance directive documents

I cannot advise you on what to avoid in forums as because I am comfortable reading them all even if I rarely contribute. Keep posting and I wish you well.

I have Alzheimer's.

I'm on the slippery slope, but still "compos mentis" enough to participate in forum discussion.
One thing that disturbs me though, is reading the harrowing accounts of carers that pepper this forum and make me despair about the trouble I may be further down the road on my journey into dementia.

Is there any way to seperate the practical advice and discussion amongst sufferers from similar discussions amongst carers?

Sometimes, I am quite distressed by the things that I read, as I do not want to be a burden on anyone

I am one of those who frequently vent my frustrations at the system, disease & my PWD; but no matter how traumatic or horrid these posts can seem - please know I love my parents no matter what. I want the best for them, I want dignity & respect for them.
When posting I’m usually at the end of my tether, so to speak. I am emotionally exhausted & vulnerable, at times irrational!
Positive Posting Thread Perhaps @Shedrech @Grannie G an option?

I’m sorry that you have been distressed at posts, but please take heart that those on here are looking to do their best for the PWD & it’s the PWD welfare & wellbeing that always is a priority. It’s unconditional love mostly, no matter how hard a read it is.

Take care, your input into how this disease affects you helps put perspective on this disease & how carers can help you live a fulfilled life.
(( hugs)) to you both

 

[Dare]

carers get frustrated for their loved ones and sometimes by them - this place is a sounding board where can vent since they don’t want to react to certain traits some loved ones develop with dementia.
I can honestly say I never thought of those I cared for as any kind of burden - despite some difficult patches. I loved them deeply and fought for the best options, help, care all down the various routes.
I treated them as I would want to be treated if I were in their predicament with their views. Sure there were frustration times - the garden benefitted from that - if I could get out there!
It is an unpleasant illness with no definite this is how you will be - some get confused yet remain quite easy to assist. Others due to the disease become concerned about things and need more careful verbal and physical help to minimise the stress all round,
If you can, write down now how much you love your nearest and dearest and whatever else is appropriate - if there are tough times they will know how you feel even if not shown .

 

[Aix]

Hello Arthur,
My husband is pretty compus mentus too. He would be greatly distressed if he read what is on here too.
He watched his twin brother progress and die with Vascular Dem. he is vehement that he won’t go the same way.
He constantly says I should go and start a new life with someone new, but he dreads that I will.
I have seen that people with early stages like you and my husband have no support through the NHS. There are so many questions, so many fears, so much confusion. All he wants is to be a regular bloke and husband. To laugh, to enjoy the years that he can without stress and worry.
I sometimes have to ask myself whether I’m doing more damage to him by staying, as he stresses about “all the extra work load he has put on me”. He seriously hasn’t, not really. He forgets how to do things, and gets words mixed up. I’ve become somewhat an expert of alternative English language, his version of English, I cannot think of an example right now but something like shelf instead of table.
We have contacted his Specialist, the Community Men Healthcare when he feels overwhelmed, and just talking to them does help him, but then they’re gone to take care of patients who’re in need of more care.
I had one horrible moment where I couldn’t believe my ears, the Mental Health Team Nurse said to me that “he’s got to get much worse before we can offer proper help”. Thank God my husband was not in the room at that point.
I hope I have helped even a little bit Arthur, I understand your worries.
Regards
Aix

 

[Aix]

I understand you completely @athurASCII having been diagnosed earlier this year with Alzheimers. From your moniker I assume you are a computer guy, whereas i am a medic. This enabled an extremely early diagnosis as I was aware of what I was experiencing. This is a triple whammy in a way as services are 1. not geared to me at the moment, 2. people often think there is nothing wrong with me, 3. and I am aware more than most what my future has in store for me.

Neither do I want to be a burden and as a fiercely independent individual this is the most worrying for me. This is reflected in my both my LPA and advance directive documents

I cannot advise you on what to avoid in forums as because I am comfortable reading them all even if I rarely contribute. Keep posting and I wish you well.

Hello Arthur,
My husband is pretty compus mentus too. He would be greatly distressed if he read what is on here too.
He watched his twin brother progress and die with Vascular Dem. he is vehement that he won’t go the same way.
He constantly says I should go and start a new life with someone new, but he dreads that I will.
I have seen that people with early stages like you and my husband have no support through the NHS. There are so many questions, so many fears, so much confusion. All he wants is to be a regular bloke and husband. To laugh, to enjoy the years that he can without stress and worry.
I sometimes have to ask myself whether I’m doing more damage to him by staying, as he stresses about “all the extra work load he has put on me”. He seriously hasn’t, not really. He forgets how to do things, and gets words mixed up. I’ve become somewhat an expert of alternative English language, his version of English, I cannot think of an example right now but something like shelf instead of table.
We have contacted his Specialist, the Community Men Healthcare when he feels overwhelmed, and just talking to them does help him, but then they’re gone to take care of patients who’re in need of more care.
I had one horrible moment where I couldn’t believe my ears, the Mental Health Team Nurse said to me that “he’s got to get much worse before we can offer proper help”. Thank God my husband was not in the room at that point.
I hope I have helped even a little bit Arthur, I understand your worries.
Regards
Aix

 

[Aix]

Hello Dunromin,
I have been talking on a thread about services not being geared up to help early diagnosis men and women. Also, as my husband appears to have nothing “wrong” with him, and he always loved being sociable and joking around with people, sooner or later he has a slip up and makes a mistake whilst talking and they look at him a bit oddly, I gently deflect their thrown expressions and joke a bit too so we both look a bit suspect .

 

[Aix]

Ps Dunroamin, my husband is fiercely independent too. And I would never change him.

 

[PeteMid]

Thanks Aix. I've started volunteering with Alzheimer's Society and Alzheimer's Research. It's very stimulating and Makes me feel like I'm doing something helpful and worthwhile.

 

[Splashing About]

I’m sorry you feel like this. I worry about getting dementia myself and your emotions reflect my private fears. I plan an advanced directive and LPOA (health & welfare) to ensure my feelings are delivered. Caring for my relatives (mum and sister) has been a massive burden in my life (I can’t lie) but also an utter joy at times. I’d never choose to not do it and remember it is a choice.

 

[Splashing About]

The other thing you must remember is that life is rarely smooth without tragedy’s and we face them with love. Miscarriage, cancer, still births, long term disease. All of them unwanted and a physical psychological burden but part of being human

 

[Lawson58]

Sadly, none of us can get through life without having some broken bits and it's these bits for which we all need help and support. The best support comes from those who walk along the same path, some ahead of us and some coming up behind and Talking Point for us fills the gaps that no one else can.

It's wonderful to share the good things but these are not the times that cause us distress and concern.

 

[dbrilyant]

I totally agree!