Things not to say to me - rant warning!

[Izzy]

Glad to read others rants and know it’s not just me. I have just become incensed by a cover of a well known woman’s magazine which has a front cover which claims “fight dementia with food” Inside is an article which lists foods which they say helps you avoid dementia or cognitive decline. If only it were that easy! I have spent 6 years watching my Mothers decline with Alz. She was a person who ate healthily, kept active, did jigsaws, played bingo, socialised, and was a regular churchgoer. All things I have seen various times in articles which claim they will “stop” dementia!

Oh that is a pet hate of mine as well!

 

[Duggies-girl]

Glad to read others rants and know it’s not just me. I have just become incensed by a cover of a well known woman’s magazine which has a front cover which claims “fight dementia with food” Inside is an article which lists foods which they say helps you avoid dementia or cognitive decline. If only it were that easy! I have spent 6 years watching my Mothers decline with Alz. She was a person who ate healthily, kept active, did jigsaws, played bingo, socialised, and was a regular churchgoer. All things I have seen various times in articles which claim they will “stop” dementia!

It makes no difference, they come out with all sorts of things, eat well, don't smoke, don't drink, keep the brain active and so on. I used to work in a hospital laboratory and our consultant pathologist developed dementia. Probably the cleanest living, cleverest man I have ever known but he still got it. My dad is a clean living and clever man and he has it. He is also very fit and healthy, never gets so much as a cold but he still has dementia.

It's pot luck.

 

[kindred]

It makes no difference, they come out with all sorts of things, eat well, don't smoke, don't drink, keep the brain active and so on. I used to work in a hospital laboratory and our consultant pathologist developed dementia. Probably the cleanest living, cleverest man I have ever known but he still got it. My dad is a clean living and clever man and he has it. He is also very fit and healthy, never gets so much as a cold but he still has dementia.

It's pot luck.

Yup. You might as well avoid walking on the cracks in the pavement ....Gxx

 

[malomm]

Over the 10 years that Mrs.M., a fit 84 year old, has had dementia, and still very active physically, I have tried every trick in the book to make her eat, take her medication, solve her serious personal hygiene issues, deal with what is in effect a hyperactive 5 year old toddler, keep everything locked down because like many she is also a kleptomaniac hoarder, and deal with beurocratic madness. Why don't you try giving her ice cream? I have. Amazon has lots of beakers to use to stop her spilling her drinks. I have a cupboard full of everything that Amazon ever sold. I've noticed none of your sinks have any plugs in, I have loads at home if you need some. Oh thanks, then she can mess with the taps again and flood the house out. You could use a dry shampoo to keep her hair clean. I do.
I could go on and on for several pages, but I think you will all get the general irritation with these sort of little gems.
Keep smiling,
malomm.

 

[Starbright]

Over the 10 years that Mrs.M., a fit 84 year old, has had dementia, and still very active physically, I have tried every trick in the book to make her eat, take her medication, solve her serious personal hygiene issues, deal with what is in effect a hyperactive 5 year old toddler, keep everything locked down because like many she is also a kleptomaniac hoarder, and deal with beurocratic madness. Why don't you try giving her ice cream? I have. Amazon has lots of beakers to use to stop her spilling her drinks. I have a cupboard full of everything that Amazon ever sold. I've noticed none of your sinks have any plugs in, I have loads at home if you need some. Oh thanks, then she can mess with the taps again and flood the house out. You could use a dry shampoo to keep her hair clean. I do.
I could go on and on for several pages, but I think you will all get the general irritation with these sort of little gems.
Keep smiling,
malomm.

My pet hate comment...”He looks so well, how can you tell with memory loss “ Der !!!!!!!!

 

[Margi29]

My pet hate comment, from mil enquirying after my mum ( mil is just evil by the way)

" is your mum better now " ???

Erm NO !!

 

[carolynp]

My pet hate comment, from mil enquirying after my mum ( mil is just evil by the way)

" is your mum better now " ???

Erm NO !!

So ghastly! My SIL, sister of my OH, who has FTD (sorry for all these acronyms) says, from the safe distance of 3000 km away, "He's over it now, though, isn't he?"

 

[Margi29]

So ghastly! My SIL, sister of my OH, who has FTD (sorry for all these acronyms) says, from the safe distance of 3000 km away, "He's over it now, though, isn't he?"

Some people, intelligence of a flea, better she's 3000 km away, I so wish sometimes my mil could be that far away

 

[SoAlone]

I find it is not what is said but who says it and it what context. I just let it go most of the time as I need my energy for the very real fights you have to undertake on OH behalf throughout this journey. Talking of which I used to clench my fists when professionals said in response to a question about disease progression 'Everyone's journey is different' However over the few years I have been dealing with this I have finally realised it is the truth, no matter how frustrating that is.

 

[carolynp]

Some people, intelligence of a flea, better she's 3000 km away, I so wish sometimes my mil could be that far away

Yes! Thanks for your response! And you’re right, I am incredibly lucky that a huge desert called the Nullarbor Plain lies between me and my SIL!

 

[Manc70]

I was reminded of this thread this week. We had actually had a good week, my OH fairly positive and dare I say happy, we had even had a good conversation about his diagnosis. Then on Thursday evening I was asked to play in a crown green bowling match (something we have both done for a few years now and my husband still manages a few games). My OH didn’t want to come and the thought of a few pleasant hours out without him felt great. Three hours later I was home feeling quite low and upset. The first comment was “how is he” but without waiting for an answer I was told that I should feel lucky that I at least have someone at home (fair enough!) Two other ladies were saying how you wouldn’t even know there was anything wrong with him when you meet him, a comment I used to like but I was stumped at what to say short of explaining to them what life at home is really like. Then a lovely couple we have recently got to know asked me how he is and again with hardly a minute to answer, apart from saying that things are not too bad just now, I was told the very sad story of both their deceased mothers having had dementia, along with tales of their mothers extreme anger, aggression, violence, incontinence, it seemed like both of them speaking at me at the same time with me nodding and saying how sorry I was while being brought down to earth about the future. I am not burying my head in the sand and I feel an affinity with all on TP whatever their circumstances are, but don’t you sometimes, even for a couple of hours, just want to be you and not the OH of the PWD. Now I’m thinking I may not have been too happy if no one had asked after him!! Oh dear how mixed up this dementia journey makes your emotions. My rant over, thank you for taking the time to read it....... xx

 

[PalSal]

I can't bear the pain and sorrow of this insidious disease. My lovely husband of only five years is leaving me a little each day. He was diagnosed with young onset last year and our whole life has been turned upside down. My Oh seems to be losing his powers of communication and his word finding becomes more difficult every day consequently he is withdrawn and often very down. If anyone says to me that there elderly relatives suffered with dementia and they know how difficult it can be I think I'll scream!!!

Dear Lovely.
My husband was 49 when this disease struck him down. Our youngest child was only 11. I was 48. I raised alot of money for Alz charity here and got very involved.
I used to get really angry with people telling me that their 80 year old mother had Alzheimers, or whatever. I wanted to scream my husband is 49...then .I met a wonderful Prof from Uni North Carolina who came to speak at forum on Alz. I told him of my anger and asked him if all these old people really have Alz or is it old age dementia or vascular dementia....not really Alzheimers. He said to me something like this....Sally does it matter? The more people call it Alzheimers the more money comes our way for research and will more likely be helpful to your children.

Somehow this helped me.

That was a good point I think. I dont care what its called any more, dementia, Alzheimers, Frontal Lobe, Creutzfeldt-Jakob Disease, all these diseases cause intense pain and suffering. Let us find a cure for all.

I met alot of people who were suffering from the loss of more elderly people to this disease. I was not very understanding or sympathic in my early years of dealing with my pain and my OH's descent into this disease. As I felt our suffering was worse because my husband was so young..and our family so young..perhaps but suffering is suffering and lose of self is horrific no matter what age the person is for them and for their families. It took me awhile but I came to that understanding....but it took time. Good luck I am very sorry you are suffering...I am sorry your young husband is slipping away from you. I can only say that for myself I try to enjoy my life everyday and look for the good moments. But my early years were very hard and I spent a lot of time being worried (which did not good..as I worry changed nothing) and being angry. Bless you and come here and rant rant rant....that is exactly what I did for years.

 

[kindred]

I was reminded of this thread this week. We had actually had a good week, my OH fairly positive and dare I say happy, we had even had a good conversation about his diagnosis. Then on Thursday evening I was asked to play in a crown green bowling match (something we have both done for a few years now and my husband still manages a few games). My OH didn’t want to come and the thought of a few pleasant hours out without him felt great. Three hours later I was home feeling quite low and upset. The first comment was “how is he” but without waiting for an answer I was told that I should feel lucky that I at least have someone at home (fair enough!) Two other ladies were saying how you wouldn’t even know there was anything wrong with him when you meet him, a comment I used to like but I was stumped at what to say short of explaining to them what life at home is really like. Then a lovely couple we have recently got to know asked me how he is and again with hardly a minute to answer, apart from saying that things are not too bad just now, I was told the very sad story of both their deceased mothers having had dementia, along with tales of their mothers extreme anger, aggression, violence, incontinence, it seemed like both of them speaking at me at the same time with me nodding and saying how sorry I was while being brought down to earth about the future. I am not burying my head in the sand and I feel an affinity with all on TP whatever their circumstances are, but don’t you sometimes, even for a couple of hours, just want to be you and not the OH of the PWD. Now I’m thinking I may not have been too happy if no one had asked after him!! Oh dear how mixed up this dementia journey makes your emotions. My rant over, thank you for taking the time to read it....... xx

Oh yes, how I understand, how I understand and sympathise. And how I too am bombarded with people's experience of dementia. I now hold a hand up to block them. It used to be terribly acute for me, people would even CROSS THE ROAD to give me their opinion. The other thing I find, joining in your rant, is that whenever I do anything like have son and family down, go to church group, folk say IT MUST BE A GREAT COMFORT TO YOU. I just say this back to them about their activities.
Yuk. I do understand. This is quite a universal experience for those of us caring for OH with dementia. All sympathy and so good to hear from you.

 

[Manc70]

Oh yes, how I understand, how I understand and sympathise. And how I too am bombarded with people's experience of dementia. I now hold a hand up to block them. It used to be terribly acute for me, people would even CROSS THE ROAD to give me their opinion. The other thing I find, joining in your rant, is that whenever I do anything like have son and family down, go to church group, folk say IT MUST BE A GREAT COMFORT TO YOU. I just say this back to them about their activities.
Yuk. I do understand. This is quite a universal experience for those of us caring for OH with dementia. All sympathy and so good to hear from you.

Hi, thank you Kindred, It is so comforting to have understanding of these feelings especially when sometimes I wonder if I’m just being a bit petty about people who at the end of the day probably just mean well. While I’m on a roll I did omit to say the other comment when I turned up on my own the other night was someone said “oh have you left him at home, is he ok on his own?” - err no I thought I would just leave him and take my chances!! Oh dear there I go again. Thank you again for replying

 

[Distressed55]

May I also have a little rant?

I hate, hate, hate being told that I have to be strong whenever I get upset about my dads condition. I feel like screaming when that's said to me. People have absolutely no idea what I've had to do or seen, and I'm entitled to be upset about this hideous disease and the effect that it's had on my dad, who was one of the most intelligent people I've known. What he's been reduced to, and yet I'm supposed to not get upset. I know that they mean well, but it would just be easier if they said nothing or gave me a hug.

And the other thing? Being told how lucky I am that my dad still recognises me. I know what horrors may be in store in the near future, I don't need to be reminded of it.

Rant over. Thanks for listening.

 

[vmmh]

May I also have a little rant?

I hate, hate, hate being told that I have to be strong whenever I get upset about my dads condition. I feel like screaming when that's said to me. People have absolutely no idea what I've had to do or seen, and I'm entitled to be upset about this hideous disease and the effect that it's had on my dad, who was one of the most intelligent people I've known. What he's been reduced to, and yet I'm supposed to not get upset. I know that they mean well, but it would just be easier if they said nothing or gave me a hug.

And the other thing? Being told how lucky I am that my dad still recognises me. I know what horrors may be in store in the near future, I don't need to be reminded of it.

Rant over. Thanks for listening.

To Distresed55:
I totally agree with you. I have a wonderful Care Giver at home with my OH on days I work and she had been a real treasure. BUT, there are times when I have difficulty dealing with losing him - like a every minute of every day. Most of the time I deal with it but sometimes the sadness overwhelms and I cry. The care giver stopped by unexpectedly on one of these days and found me crying in the kitchen. She asked what had happened. Well nothing new had happened, I just went over the edge. Instead of getting needed comfort from her though I got the comment "it's all good here, there's no crying allowed". Well let me tell you that hit me like a ton of bricks! If I want to cry sometimes I feel I have the right to. No one should be able to tell me not to.
Now, I know she didn't mean it that way. She was just trying to lighten up the mood but it was still hard to swallow.

 

[Manc70]

Hi Distressed55 and vmmh, oh my heart is with both of you, I know exactly what you mean and how you feel. I actually feel as though I am crying all the time even when I am outwardly happy and smiling. I go in the bathroom for one of my silent screams before putting the mask back on. I don’t even think it’s depression just incredible sadness about what is happening to my OH. I have 2 daughters and a son who are distressed at seeing their dad change from the dad he was and you have reminded me Distressed55 that I must look after them and not just let them look out for me which I think happens more. Take good care, hugs xx

 

[Jezzer]

May I add my tuppence worth and firstly, with apologies to anyone who uses, and is comfortable with, this description. It's when I read about the "Dementia Journey" I am apparently on with my mum. Er, NO! A "journey" is a drive of some distance somewhere, something I've not done for years. Mum too is not on a journey. She is, bluntly, in the queue for death. I am not on a damned journey either. I am in a living nightmare, watching a beautiful lady who has only ever been kind to her family and friends during her life, stuck in bed, every deeply personal need having to be dealt with by other people. How she would hate this were she aware. So no, please never, ever insult and patronize me by saying "I am "on a journey". Thank you for letting me rant.

 

[Distressed55]

Yes , Jezzer, I completely agree. It's a euphemism that renders dementia into something that our US cousins call "sanitised for your convenience". It's not for our convenience, but for those who have no direct experience of this living hell, and they think they are being sympathetic, empathetic and supportive. Whilst in actual fact they are actually diminishing the sufferer and their carers, and taking away another piece of the people enduring this.

 

[Jezzer]

Yes , Jezzer, I completely agree. It's a euphemism that renders dementia into something that our US cousins call "sanitised for your convenience". It's not for our convenience, but for those who have no direct experience of this living hell, and they think they are being sympathetic, empathetic and supportive. Whilst in actual fact they are actually diminishing the sufferer and their carers, and taking away another piece of the people enduring this.

Thank you - much appreciated.