Regrets on Missed Information

[technotronic]

While caring for my wife (who has very recently passed away) with Early Onset Dementia over the last five years I read up a lot on dementia on here and on other web pages so I would know what changes can happen and at what stages so I would be able to recognise them when they occurred.
I did read up about the possibility that they could stop eating proper food, as my wife did, n went on to only eat chocolate. I did somehow miss the information that she could forget how to feed herself, which can also result in them stopping eating proper food, which knowing what I know now i very much regret, as I used to put cooked food out for her still n she would pick up the fork n move the food around on the plate.
It never occurred to me that she could have forgotten how to feed herself, n by moving the food around on the plate she must've wondered what she needed to do next with the food
If only I had not missed that vital information I could perhaps have kept her eating n kept her body strength up as well, n her not losing so much like she did that she couldn't even stand anymore like happened to her. It could also have helped save an unnecessary trip to n stay in hospital for nearly a month being fed n some of her body strength partly restored.
Please check all information that you can so that you are fully informed n haven't missed any vital information like I sadly n unfortunately did to my regret.

 

[LadyA]

@technotronic all of us who have lost someone to dementia have probably gone through this. "What if I'd..." "if only I'd..."
You did the very best you could, with what you had at the time. We all do. Sadly, from the beginning, you were going to lose. It was not a fair fight. Dementia had the upper hand.

 

[technotronic]

@technotronic all of us who have lost someone to dementia have probably gone through this. "What if I'd..." "if only I'd..."
You did the very best you could, with what you had at the time. We all do. Sadly, from the beginning, you were going to lose. It was not a fair fight. Dementia had the upper hand.

What you have said is probably very true but guess mine is not so much a what if but a really big regret that I missed the vital information that could have at least helped. It wasn't a fair fight n I knew there would be no winner but I at least hoped to make her life a lot more easier n comfortable through it all, n not have her in such pain with her legs and her body all over to the touch near to the end as happened to my wife regretfully.

 

[Amy in the US]

@technotronic, I am sorry for your loss.

I can understand having regrets. But please try to keep in mind that you were not the bad guy and you are not to blame. The dementia was the enemy, not you.

 

[Duggies-girl]

We do our best. My dad lives on yoghurts and chocolate biscuits. He is happy so I am happy. I am not going to force him to eat his greens.

We do our best in the circumstances given.

I am sorry for your loss and I am sure you gave her you best. So very sorry.

 

[Fullticket]

I'd echo what everyone has said - we do our best. I've picked up all sorts of information on this site that I would not have known otherwise and, once something is explained to you, you think "Oh, why didn't I think/know that? It is so obvious." Point is though that few of us have come into this with a 'carers' head on, there is virtually no information or training and we are not awarded certificates for what we do know, we only don't know what we don't know!
I am so sorry for your loss and you gave your all to her, and you are bound to feel guilty and upset that you didn't know what you didn't know, but dementia is the enemy, not you.

 

[Grannie G]

It never occurred to me that she could have forgotten how to feed herself, n by moving the food around on the plate she must've wondered what she needed to do next with the food

It`s so easy to be wise after the event @technotronic . It`s a time when you have time, whereas when caring 24/7 you have no time at all.

I know I missed many signs . I know I showed impatience when my husband wouldn't have been able to help himself. I know I made many mistakes but I didn't know then, I only know now.

 

[love.dad.but..]

I did all the things regarding helping dad to eat as soon as it was needed that you say you regret not noticing that they needed doing for your wife...it made no difference in real terms of slowing down his decline or his ability and understanding to eat. We all probably have what ifs...when we have time to reflect after our loved one has passed away...please don't do this to yourself...you did your very best at every stage for your wife when she needed you most

 

[DollyBird16]

@technotronic
Bless you, while you deal with such a difficult time, you continue to share and help others through this oh so painful journey.
Your kindness and care is huge.
I wish you peace and keeping of the wonderful memories you built with your dear wife. X

 

[NORTHSIDE]

While caring for my wife (who has very recently passed away) with Early Onset Dementia over the last five years I read up a lot on dementia on here and on other web pages so I would know what changes can happen and at what stages so I would be able to recognise them when they occurred.
I did read up about the possibility that they could stop eating proper food, as my wife did, n went on to only eat chocolate. I did somehow miss the information that she could forget how to feed herself, which can also result in them stopping eating proper food, which knowing what I know now i very much regret, as I used to put cooked food out for her still n she would pick up the fork n move the food around on the plate.
It never occurred to me that she could have forgotten how to feed herself, n by moving the food around on the plate she must've wondered what she needed to do next with the food
If only I had not missed that vital information I could perhaps have kept her eating n kept her body strength up as well, n her not losing so much like she did that she couldn't even stand anymore like happened to her. It could also have helped save an unnecessary trip to n stay in hospital for nearly a month being fed n some of her body strength partly restored.
Please check all information that you can so that you are fully informed n haven't missed any vital information like I sadly n unfortunately did to my regret.

Thank you so much for pointing this out. My wife's eating habits have started to change; although she still has a healthy appetite she has started initially just moving food around the plate before tackling it very methodically, one item at a time. Thankfully she does usually very slowly clear the plate. I try to ensure she has nothing difficult to cut up and so far we are getting by.

Thanks again for pointing out this issue, every bit of advice helps.

 

[technotronic]

Thank you so much for pointing this out. My wife's eating habits have started to change; although she still has a healthy appetite she has started initially just moving food around the plate before tackling it very methodically, one item at a time. Thankfully she does usually very slowly clear the plate. I try to ensure she has nothing difficult to cut up and so far we are getting by.

Thanks again for pointing out this issue, every bit of advice helps.

I am pleased that the information that I missed n have now pointed out on here has been useful to you and to anyone else in increasing the awareness of how much the condition can change n unless we have all the information (which I unfortunately didn't) we won't recognise this change too easily or know what to do when it happens. Research is the key, find out as much as you can from the start, I thought I had but obviously hadn't.