Well meaning friends

[PalSal]

A friend is always sending me articles about dementia. There was an article in the New York Times earlier this week.
The title was Unusual Ways of Treating Dementia.
I find things like this so frustrating. It was talking about a facility in the Netherlands with 210 patients of which 90 were being given this special care.....a drop in the bucket.
Clearly the facility has excellent palliative care for people dying of dementia. But the headline is misleading. This is not about “treatment” or “fighting the disease”. We still do not have treatments that restore people enough to function with independence. A less stressed and peaceful environment is of course a very good thing. But staring at pictures of nature on my ceiling does not seem much of a life and is not a treatment but rather comfort care.

I get upset when people send me this stuff.
I told my husband family years ago to quit sending me stuff about cures and care....they stopped.
Angry at the NYT as the writer does not know the difference between fighting the disease and managing the disease. Ignorance is everywhere.
Upset that my friend does not realize that after 16 years I am doing whatever I can to relieve the stress and anxiety in my hubby's life . This information is not new to me.

Oh, well once again it is about acceptance. People do what they want or can to make themselves feel better. She thinks it is helpful, and caring but it is annoying. I guess I should tell her.

Being helpful to me requires action. I have a young expatriate woman friend who is alone here in Basel. She is having a minor operation next week and will have a day surgery. But she will have a long weekend at home to recover. So, I am making her some frozen prepared meals to give her. Yesterday, I made braized meatballs, Delia Smith recipe I love, today I will make enchiladas (i prepared the sauce yesterday so one step in the process completed) and tomorrow, I will make a chicken spinach savory bread pudding. Her dad died two years ago of cancer and her mom died last month after about 7 years of dementia.

This afternoon I will practice guitar and sing with a friend. And dinner out at friends house tonight with hubby.

Just have to keep on keeping on.....find those moments of joy and pleasure. Move off anger.

 

[Grannie G]

I get upset when people send me this stuff.

So did I.

A little bit of practical help would have been appreciated much more. Many people outside dementia seem to think reading about it improves their expertise.

 

[SoAlone]

I found this very annoying too. I too had to ask a friend to stop tagging me in every dementia post on facebook. At that stage I was only just coming to terms with my OH diagnosis although I had known he was unwell. It is not a secret but equally I have fb friends that don't need to know and my family and I don't post updates about OH condition either. Like you say practical help is most appreciated especially visits to OH although I find people outside the family reluctant to visit and if they do only want to go with me. My daughter and Grandson visit regularly and without me to give a break. I thought my friend would be upset but, actually she apologised as she just hadn't realised how I would feel

 

[mumsgone]

It can be really frustrating when people do things like this as if you wouldn't have looked into everything yourself ! nobody can understand what it's like to live with and care for someone with dementia until they have actually had to do it. On a slightly different note i can remember when my mum was in nursing home near the end and i was clinging to the fact that she still recognised me even though she introduced my sister to people as my friend. One day when i was with her a visitor came into the lounge and asked if the lady i was with was my mum as when she had been in before my mum has mistaken her for her daughter I could have quite cheerfully slapped her !!! I know she didn't mean any harm but wish she had kept her mouth shut !!! All you can do is put these things to the back of your mind and carry on you know you are doing everything you can to make life the best it can be and no amount of leaflets etc is going to change that xx

 

[AliceA]

I am often obscure about the details. Too many are experts about other people's lives.
One cousin sends worst case scenario stories about people she knows, or thinks she knows, not helpful. It is a another country and system too. I never reply to that part just ignore it. Unless someone wants to come over, roll up their sleeves and do something. Just get off my case unless they want to make it theirs.

 

[Grahamstown]

The more I learn about living and caring for someone with dementia, the more I realise how ignorant of the disease most people are, and I can hardly blame them for that because I didn’t really realise even though I had worked with PWD in my working life. You learn the hard way on the job and have to help others to understand as you go along, as well as put up with well intentioned ‘help’. I saw my friend of 50 years and her husband who has dementia on a short break to where they have moved. We had a coffee morning and a good talk and I mentioned how restless my OH had been one night on this break. She said that her husband did odd things over the nighttime too, and I said that I thought it was a feature of dementia, sundowning, and it was as if a lightbulb had been turned on in her face. So we both felt a bit better from our shared experience. Her husband has been suffering for years, won’t see a doctor and thinks he is fine.

 

[love.dad.but..]

The more I learn about living and caring for someone with dementia, the more I realise how ignorant of the disease most people are, and I can hardly blame them for that because I didn’t really realise even though I had worked with PWD in my working life. You learn the hard way on the job and have to help others to understand as you go along, as well as put up with well intentioned ‘help’. I saw my friend of 50 years and her husband who has dementia on a short break to where they have moved. We had a coffee morning and a good talk and I mentioned how restless my OH had been one night on this break. She said that her husband did odd things over the nighttime too, and I said that I thought it was a feature of dementia, sundowning, and it was as if a lightbulb had been turned on in her face. So we both felt a bit better from our shared experience. Her husband has been suffering for years, won’t see a doctor and thinks he is fine.

I think that is true...before I cared for dad I knew dementia was more than the image shown mostly on tv..memory loss and gentle confusion...but I like all of us learnt the hard way through 24/7 caring into the challenging stages just how vile the illness is and how it totally impacts on every part of the pwd and carer lives. So I tend now to think that initially how could someone who has never seen or had to deal with what we have know or understand and from there comes a question asked or a comment made out of ignorance. Even reading about the challenges from good literature doesn't reflect the emotional and physical moment for carers having to handle a situation. However if a friend has asked and it has been explained in blunt terms then to show lack of understanding and make another ignorant and insensitive comment ...well I don't suppose unless they have to deal with a loved one with pwd first hand they will ever understand.

 

[Manc70]

It can be difficult to hear what some people have to say sometimes even though you know they are trying to be kind and well meaning. I was chatting to the guy I employed to help with our very large garden as we are not coping with it, and he was asking how my OH was and he did that now familiar “oh I’m always forgetting names etc” and then how he sometimes wondered if his son is getting dementia as he forgot his keys the other day and it turned out when he phoned his landlady that he had left them in the door!! I’m sure he just spoke without thinking, maybe didn’t know what to say.
We went to our local dementia cafe yesterday for the third time. There is only a small number of people there and last week it was so nice to just sit having a chat and a laugh (and cake) but yesterday there was a well meaning, I’m sure kind lady who was a retired chief nurse, member of lots of committees etc, who was writing a report for the Council and wanted to pick our brains about what could be done to help (bit confused but I think mainly carers). I could see my OH shoulders drop and the blank look come acros his face as she referred to me as his carer (I don’t think it had entered his head until that point that that was what I was becoming) - feeling a bit stroppy I said I don’t think of myself as his carer, that we care for each other and it’s just that I have to look out for him just a bit more now. Out of 9 people there only two had dementia, a lovely lady who was further along than my OH, and the resultant conversation got a bit heavy and negative so we excused ourselves saying we needed to go shopping. The rest of the day wasn’t great! Rant done, feel better, going to do some much needed dead heading with hubby before the promised rain tomorrow.

 

[love.dad.but..]

It can be difficult to hear what some people have to say sometimes even though you know they are trying to be kind and well meaning. I was chatting to the guy I employed to help with our very large garden as we are not coping with it, and he was asking how my OH was and he did that now familiar “oh I’m always forgetting names etc” and then how he sometimes wondered if his son is getting dementia as he forgot his keys the other day and it turned out when he phoned his landlady that he had left them in the door!! I’m sure he just spoke without thinking, maybe didn’t know what to say.
We went to our local dementia cafe yesterday for the third time. There is only a small number of people there and last week it was so nice to just sit having a chat and a laugh (and cake) but yesterday there was a well meaning, I’m sure kind lady who was a retired chief nurse, member of lots of committees etc, who was writing a report for the Council and wanted to pick our brains about what could be done to help (bit confused but I think mainly carers). I could see my OH shoulders drop and the blank look come acros his face as she referred to me as his carer (I don’t think it had entered his head until that point that that was what I was becoming) - feeling a bit stroppy I said I don’t think of myself as his carer, that we care for each other and it’s just that I have to look out for him just a bit more now. Out of 9 people there only two had dementia, a lovely lady who was further along than my OH, and the resultant conversation got a bit heavy and negative so we excused ourselves saying we needed to go shopping. The rest of the day wasn’t great! Rant done, feel better, going to do some much needed dead heading with hubby before the promised rain tomorrow.

That must have been upsetting disappointing and frustrating all rilled into one. I don't even think people's insensitivity is limited to dementia...I have been with a friend who has to use a wheelchair because of progressive MS and someone bluntly asked her why she is in a wheelchair and what illness she had and worse than that...they addressed me first completely bypassing my friend! She says is happens from time to time

I have just dead headed and tied up my beautifully big and tall sunflowers ahead of rain tomorrow. Enjoy the peace of your garden both of you

 

[kindred]

I am often obscure about the details. Too many are experts about other people's lives.
One cousin sends worst case scenario stories about people she knows, or thinks she knows, not helpful. It is a another country and system too. I never reply to that part just ignore it. Unless someone wants to come over, roll up their sleeves and do something. Just get off my case unless they want to make it theirs.

ABSOLUTELY. Especially the worst case scenarios. When my husband was first diagnosed and I made the mistake of telling people this was all I got. Endlessly told about old George down the road who was a concert pianist but was found naked in his garden doing a poo. Stuff like this. I was cold with fear a lot of the time. Everyone went to end stage, how they end up ... And now, now that husband is in nursing home, most of people's conversations begin, So, how do you like being on your own then?
Can you believe it???
Geraldine aka kindred.

 

[Janie M]

Don’t you find some people, even family , think Alzheimer’s is just about “being forgetful “? They’re not the ones who have to put up with mood swings, hiding thinks,....I could go on and on.
But even I had to laugh yesterday, OH wanted to iron some money as he said no one would accept it with creases in it!

 

[Starbright]

Don’t you find some people, even family , think Alzheimer’s is just about “being forgetful “? They’re not the ones who have to put up with mood swings, hiding thinks,....I could go on and on.
But even I had to laugh yesterday, OH wanted to iron some money as he said no one would accept it with creases in it!

That made me smile ..thank you ..we have to try find snippets of humour now and again don’t we...otherwise well !!! Let’s not think about how it might be ....stay strong A x

 

[love.dad.but..]

Don’t you find some people, even family , think Alzheimer’s is just about “being forgetful “? They’re not the ones who have to put up with mood swings, hiding thinks,....I could go on and on.
But even I had to laugh yesterday, OH wanted to iron some money as he said no one would accept it with creases in it!

 

[Distressed55]

ABSOLUTELY. Especially the worst case scenarios. When my husband was first diagnosed and I made the mistake of telling people this was all I got. Endlessly told about old George down the road who was a concert pianist but was found naked in his garden doing a poo. Stuff like this. I was cold with fear a lot of the time. Everyone went to end stage, how they end up ... And now, now that husband is in nursing home, most of people's conversations begin, So, how do you like being on your own then?
Can you believe it???
Geraldine aka kindred.

That's appallingly insensitive of people, to ask you that. How are you expected to respond? " oh, it's marvellous, I'm having a rare old time?" ?????

I have a friend, who, when I'm describing what dad is going through, will look at me and say "yes, that's cognitive problems".

Really? Who'd have thought, a man with advanced dementia has cognitive problems.

Smacks forehead at the insensitivity of people......

 

[Janie M]

@Distressed55..... I understand the saying now of “walk a mile in my shoes”. My life, our sons, has now changed forever with this horrible disease. Insensitive, even by extended family members don’t even come in to it. Good job we understand on TP. Xx

 

[Duggies-girl]

I confided in a friend that in hindsight I should have put dad into a care home months ago because it is all getting a bit much now. She looked horrified and said she would never put a family member into a home however bad they were.

I have got over it now but I felt very small at the time.

 

[AliceA]

ABSOLUTELY. Especially the worst case scenarios. When my husband was first diagnosed and I made the mistake of telling people this was all I got. Endlessly told about old George down the road who was a concert pianist but was found naked in his garden doing a poo. Stuff like this. I was cold with fear a lot of the time. Everyone went to end stage, how they end up ... And now, now that husband is in nursing home, most of people's conversations begin, So, how do you like being on your own then?
Can you believe it???
Geraldine aka kindred.

Trouble is I can! Just a reminder on BBC 4 The John Wilson Orchestra is doing Bernstein's On the Town. I am raising a virtual toast to all watching.

 

[love.dad.but..]

I confided in a friend that in hindsight I should have put dad into a care home months ago because it is all getting a bit much now. She looked horrified and said she would never put a family member into a home however bad they were.

I have got over it now but I felt very small at the time.

I fortunately didn't get that from anyone I knew but I was always incensed when famous people or otherwise wrote newspaper or magazine articles saying no matter what ....our elderly parents should always live with us. I once emailed such a person bluntly describing my week with challenging dad...no surprise that I didn't get a reply.

 

[Duggies-girl]

I fortunately didn't get that from anyone I knew but I was always incensed when famous people or otherwise wrote newspaper or magazine articles saying no matter what ....our elderly parents should always live with us. I once emailed such a person bluntly describing my week with challenging dad...no surprise that I didn't get a reply.

I somehow doubt that these famous people have any hands on experience.

 

[Distressed55]

T

I confided in a friend that in hindsight I should have put dad into a care home months ago because it is all getting a bit much now. She looked horrified and said she would never put a family member into a home however bad they were.

I have got over it now but I felt very small at the time.

How dare she! People have no idea what dementia is like, they just think that the sufferer gets a bit forgetful. They just don't know what really goes on.

Someone at work overheard me saying that I wanted dad to go to sleep and not wake up. Her response was that I should be grateful he was still alive. Point is, my dad really isn't alive. His body is still alive, but the person that he was has gone. I can't speak to this person now.