Coping with comments....advice please

[DaisyG]

I'm interested in finding out how others have coped in situations when family make daft/ridiculous 'comments'..... regarding general process the Alz.

They know that their brother repeats himself (a lot !), but they get really MAD at him for doing so.
They SHOUT at him to STOP etc... etc...
I can stay calm, and say ... 'you've said that already'......
The more he does it, the LOUDER they have begun to shout.
If anyone shouts, he get quite agitated, and repeats himself.... +++


My husband forgets that he has already done a lot of 'things', including EATING
This weekend we were on a rare family visit, and my S-I-L SHOUTED to my husband
"YOU BETTER HAD NOT FORGET THAT I'VE COOKED YOU A MEAL, OR I WILL BE REALLY P'D OFF WITH YOU !!"

No matter how much I try and 'explain things' to them, they do not listen at all.
It's as though they have all 'collectively' decided that there is nothing wrong.

He has been told to.. "Pull himself together"... "Stop messing about" etc etc...

What shoud I be doing to make family understand that neither I or my husband has any real 'control' over what is happening?


I'd appreciate any of your thoughts.

Regards,

DaisyG.

 

[widget]

Wow Daisyg it's a tough one. Some people can be so unsympathetic can't they?
Personally I would call a family meeting (preferable with the sufferer not present) and calmly let them know that this is a serious issue and by acting in such a way they are only making matters worse for your husband.

Failing that (or if the family live quite a distance apart) perhaps a well worded letter or email would do?

I really hope you can sort this one out, let us know how you get on

 

[widget]

Another thought:

Organise yourself a day or weekend away (visiting a sick relative?......the white lies come thick and fast nowadays!) and get one of the worst offenders to 'babysit' for you. There would then be absolutely no doubt in their mind about how serious the situation is and they should be helping, not hindering!

 

[DaisyG]

Comments...and things

Hi, Thanks for your replies....


Family are in denial about EVERYTHING. Strokes +++ and Alz (MID)
They won't listen to ANYTHING I have to say.
They WILL certainly NOT even think about 'baby sitting'.... EVER...
(If you ever have the time ..read other posting by me ! ).


In the past I've had Nurse Specialists and even Consultants write me letters that I can .....
'accidentally leave out on the table for all to see' .....
And even though these letters are self explanatory... they get 'poo-poo'd' .....


A good example of this is a letter from the Epilepsy Nurse Specialist stating that under NO CIRCUMSTANCES MUST ANYTHING BE PLACED in his mouth during a seizure....
(Facts that I know off by heart, and would not even consider anyway...).


"I don't care what THAT nurse says, what does she know ? .....
If you have a seizure and I'm around, I'm going to put a spoon in your mouth !!!.
Husband.... "But there's a good chance that you'll break my teeth"
"So what !!"....


Sadly they do live close (enough), that you woud think they care...BUT
We are one of those unfortunate 'beings' that have lost a lot of family and friends due to 'our problems'.

Even though they have seen the letter/s from the Consultants they have chosen NOT to believe them...
I think they think 'It's just a bit of a phase... and there really is nothing wrong'...


The way they have all reacted is hard to live with, hard to write about...hard to talk about... and hard to explain...


I know there has to be some others on the TP pages that have been though, and are going through...the same things as me.

Regards

DaisyG

 

[dmc]

hi daisyG

can i just say i have just read your posting and im speechless!! that your family can put you through that is unforgivable, as if this wretched disease is not hard enough to cope with!!

but i do believe that what goes around comes around so hang in there
no advice really just to send you best wishes and my thoughts are with you as you try and cope
good luck

 

[Kathleen]

Daisyg

You really seem to have drawn the short straw with your husbands family.

You say you have lost family and friends through this illness, they were not true friends or they would be there for both of you at this horrible time, true friends stick by each other no matter what.

Family can be a blessing or curse too, I know, if your husbands family can't be bothered to even try and understand, maybe it would be better to keep them at arms length. It seems they cause him needless distress, you both deserve and need love support, not negativity.

Have you any local support group you and your husband could attend?

Like dmc, I believe what goes around comes around, not much comfort at the moment, I know, but the most important people in your life are you and your husband, so look after yourselves.

Thinking of you

Kathleen

 

[zed]

Dear Daisy

That sounds awful. It never ceases to amaze me how unthinking and actually stupid people can be about dementia. It is really unfair of your husband’s family to act that way. It is amazing how many people think dementia is something you can snap out of, when infact it is a physical disease of the brain.

I have similar problems with my family. My mum’s boyfriend absolultey refuses to accept mum has a disease. When we were told she was not allowed to drive anymore because of the dementia, he kept giving her the keys and letting her drive! He makes no attempt to support her because of the dementia.

Could you invite one of the family members to attend a hospital appointment with you? Or try to get hold of a brain scan and report to show them?

My advice to you would be to stop expecting them to understand. Once you stop hoping that they will understand, you might feel better. Instead, find out if your local Alzheimer’s Society, Carers Centre or Crossroads has a carers support group you can attend, and then you can meet like-minded people who can support you.

 

[Blue_Gremlin]

DaisyG,

I know what you are going through. My husband's grandmother has sisters who live near her (just next door in one case) and we live 20 miles away and visit as often as possible. They shout at her and get cross with her when she loses things or repeats herself. I can't stand to see them treating her like that and that makes me angry too. I however, do not take it out on her. I have been told I am remarkably patient with her but I firmly believe that that is how everyone should be with her. After all she didn't ask to have dementia!!

The situation is exaserbated by her being almost totally deaf now and refuses to wear her hearing aid (has been refusing for a long time now) so she needs to be looking at you when you speak to her and you have to speak loudly and clearly. Her sisters just get mad with that too and accuse her of just not listening.

I thought it might be because they are with her more than us and they just can't cope, but part of me thinks they forget (or deny) that she is actually ill.

Anyway, I am afraid I have no idea how to fix the situation either, but remember you are not alone!!

Blue_Gremlin

 

[DaisyG]

Family.....

Thank you for your replies.


I know I'm not the only one to be going through a tough time.


I have so much patience and understanding, even I can't believe it sometimes !!
It goes with the job really, as I'm sure you'll all agree.


I 'sort of' understand the families anger and frustration.... to a point..... then we have a ......BUT.... A very big BUT........
They really SHOULD understand.
I think it's because he is SO YOUNG, and they are scared (in a way).


I've spoken to MY family, and they really don't know what to say.... and with them not living in the country they are powerless to help in any way.
(The relatives that are left in the UK , are MILES away, and elderly themselves)


His family were ANGRY with us before MID diagnosis, when we 'just' had the strokes to contend with.
They seem embarraced to be seen with him, though he really does look JUST THE SAME... (in sitting)
Only when he attempts to 'walk' do you know something is 'wrong'....



They won't give up ANY of their 'activities' to spend time with their brother...
I find it SO SAD that they could be spending a few minutes with him while he is
still able to 'communicate'.


They won't even take him to FOOTBALL, as they 'don't like where the disabled supporters have to sit !!' and won't take him to the toilet if the 'game is in play'.....



Not so sure what to think about a couple of you saying ....
"What goes around...comes around"

Is there really such a thing as justice?

Take care

DaisyG

 

[dmc]

hi daisyG

Not so sure what to think about a couple of you saying ....
"What goes around...comes around"

Is there really such a thing as justice?

Nobody knows when illness will strike them, and maybe they will need caring for or have a disability that will affect them, your " family" are not immune, my mums dementia has only started since she had a heart attack,
so yes i really do believe what goes around comes around


you must have the patience of a saint to put up with them
i take my hat off to you well done

 

[Brucie]

Perhaps give them a bit of paper with the following written on it:

Imagine this.

You know there is something wrong with you though you don't know what.

You forget things that you know you shouldn't forget, and your memory span is very, very short.

You don't only forget things like meals you have just eaten, the date and where you left things - you also are beginning to be uncertain who the people are who are with you. You are not sure which cutlery to use at meals and the last time you tried to write your signature, you had difficulty.

You are scared because of all this, and are desperately trying to hide your problems from everyone.

Now pretend this is your situation right now, if you can.

Finally, reflect on how someone shouting at you will make your situation any better.

Think, perhaps, how helpful it might be if they were sympathetic and tried to understand your situation.

 

[frederickgt]

Coping with comments


Heard a phrase today which brought tears to my eyes,though i believe it to be true..
it was ALzheimers... The long goodbye.

 

[daisymaid]

comments

Sat here having a drink of wine usual friday thing relaxing for wkend,saw the comment ,i have being saying goodbye to my mum for the last 13yrs,but her time is running out now,i have often prayed,especially when my dad died that he if he really loved mum would he come and get her so they could be together once again.

She doesnt no that firstly her beloved son died 2001 her husband died 2002 then her mother died 2003 and mum goes on bless her.

Not to be anywhere at the moment except in her own world.

Regards Daisymaid

 

[DaisyG]

My Family

Daisymaid,

Just read your comments ... and cried...


Regards,

DaisyG