Respite Problem ...... again

[Nell]

What I find hard to 'understand' is how they ALL can be thinking 'wrong'?
Why should I keep things a SECRET ?
I'm in thiis for the long term, and have no plans to go anywhere.

DaisyG

Daisy, many years ago I faced a similar situation altho' not around AD. It was as if there was a complete conspiracy to make me feel inadequate, at fault, etc. This was not in my family (thank goodness) but at work.

Like you, I couldn't understand it and raged against it. (These people were my FRIENDS!!) Eventually I came to understand it IS a conspiracy - for whatever reason they choose to believe and act in this way. (It may be that at least some of them are secretly on your side but too scared to go against the others who are stronger/ more vocal/ etc.)

I simply left the job (much easier than leaving a family, I know) and cut them off completely. Life immediately started to improve, but 20 years later I still bear the scars.

May I suggest you consider some counselling for youself to help you deal with this rejection of their's?? This is because such pain, hurt, rage and rejection as you feel (I know! I've felt much the same) eats away at you and causes illness (either physical or depression). Please guard your own health by having some professional help - you deserve to come out of this awful situation as unscathed as possible.

Thinking of you, Nell.

 

[sek.kong]

Hi Daisy G
This has probably been said, but here goes....
Don't feel bad. The only way to cope is to ignore them. Book the respite, tell them (if they need to know) and do it. If they whinge suggest politely that they could have him instead. (!) Don't get drawn into the "why aren't you coping" discussion, just repeat that this is what you've decided to do and if necessary keep repeating it. Not easy but it's what I do with the stroppy kids I work with and it takes the wind out of their sails. you sound like you need the break. Go for it!

 

[DaisyG]

Update....

Dear TP’ers,

Well, I’ve got a weeks respite arranged for the beginning of December.
Yes, I know it seems age away… but that’s all the Social Worker can come up with, as husband has MULTIPLE needs… and he is so young.

A lot of care homes won’t take anyone under the age of 65 apparently.

His Psychiatrist TOLD me that I SHOULD arrange to have it more often… say every 6 weeks … so I don’t get burnt out…. Like I have been doing.
He says to treat it a bit like a PRESCRIPTION from him to me.
He says the more respite the better for our relationship.


As yet…. I’ve NOT told the in laws.
I STILL DON’T KNOW WHY THEY ARE DEAD AGAINST ME HAVING A REST / BREAK.


Been having a dreadful week or so.
Violence on the increase… as are the delusional and psychotic episodes.

Next prescription we have an increase in his MEDS… so we shall see.


I’ve spent the weekend defending myself for just about everything.
Feel shattered in EVERY way.


Think we may now have a slight problem of occasional incontinence.
Says he does not have a problem p’ing and there is no pain etc…
He says it’s just the lack of control with his muscles … due to his stroke.

Never had this problem before… so don’t know if it is just a passing thing…
Or, another stage and problem for me to deal with.

Also, during week found out that we may need to have oxygen at home… mostly for during the night.
Occasionally…. After he has had a BAD seizure.


Today’s news….

I WAS WELL AND TRULY INFORMED TODAY THAT THE PSYCHIATRIST AND PSYCHOLOGIST THAT COMES TO SEE MY HUSBAND …..

IN FACT ARE NOT COMING TO SEE HIM AFTER ALL….


HE BELIEVES THAT THEY ARE COMING TO SEE ME …
AND HELP ME DEAL WITH MY MEMORY PROBLEMS !!


Husband has also added that ….
When we go to outpatients to attend his various clinics … the doctors are
MONITORING ME , as well as HIM.

As ……


THERE IS NOTHING WRONG WITH HIM !!
HE DOES NOT KNOW WHY WE HAVE TO GO TO HOSPITAL !!



I know it’s just a ‘ thing’ that he has begun to say….
But any advice on how to let this and comments like this wash over me?


I’VE HAD A FULL WEEKEND OF COMMENTS LIKE THIS… AND I’M WORN OUT.

Take Care

DaisyG

 

[jenniferpa]

Hi Daisy,

You know what you've got to do - DON"T tell the inlaws and let the comments wash over you (someone on the board once commented that if we met in person we wouldn't be able to talk because we all have swollen longues due to the tongue biting).

Jennifer
(who's had her petty problems put in perspective)

 

[Skye]

Daisy, you really need that respite. No-one should have to put up with abuse from others, caring is hard enough.

Plan to do something special with your break, and as Jennifer says, don't tell the in-laws. Then count off the days till then. You can get through it if you focus on your respite. Hug your secret to yourself, and go back into it when things get unbearable.

Good luck, Skye

 

[Grannie G]

Daisy, I really understand how angry it makes you to hear others speak so highly of the in laws you find so hypocritical.

There`s nothing worse than people blowing their own trumpet and convincing everyone about their compassion. I honestly think they believe their own stories and are convinced they are the most caring people in the world.

As for your husband believing you are the one who needs the Psychiatrist, I get that too. I get to the stage where I agree, and tell my husband I need psychiatric help to enable me to cope with him.

I feel guilty afterwards as it`s not his fault. He makes these statements but doesn`t know what he is talking about half the time.

Just try to tell him all this treatment is for you,too, to help you cope. It might work.
Then again, pigs might fly.

Take care..Sylvia

 

[Cate]

Oh Daisy what a cruel bunch you have for in laws. I echo in spades all the comments you have already had. You MUST look after number one, if you break down, God forbid your husband would be at this awful bunches mercy, you do what you have to do for your sake and your husbands.
Thinking of you
Cate

PS Just had a wicked thought, I would be VERY tempted to arrive at their house, arm/hand in bandage and tell them you need help, so here is hubby, see you in two weeks, and tell them you bumped into loads of people from the church en route and invited them to theirs to see hubby whilst he was staying with them because of your injury. If all else fails, BAN them.

 

[Margarita]

Grannie GAs for your husband believing you are the one who needs the Psychiatrist, I get that too. I get to the stage where I agree, and tell my husband I need psychiatric help to enable me to cope with him.

What good advice I was going to say something along those lines, as its also happen to me with my mother .

 

[Kathleen]

My Mum's psychiatrist did actually assess how Dad was coping when Mum went for her consultation, so your husband is not far off the mark on this one, really.

The reason he gave was that the carer is every bit as important as the AD sufferer and he felt it his duty to see that both Mum and Dad were managing as well as they in a stressful time for both of them.

Unfortunately, since Mum was taken off Reminyl, she no longer sees the psychiatrist, she is in the care of the GP, the psychiatrist will only see her if she has a "major" problem..........presumably AD is not major enough!

You stick to your conviction and tell those in-laws nothing at all about the respite and make sure you treat yourself to a relaxing time while he is in respite.

Kathleen

 

[DaisyG]

Good Morning....

Well,

Husband now saying that he will NOT go to respite.
Said he hated it !! But at the time it seemed OK ..... no complaints etc.
Said they did not give him his medication .... just like at home ....
said they didn't feed him either... not all the time anyway........


I've let it go for now..... and will not mention it again until a few days before he's due to go.

IN LAWS WILL GO CRAZY WITH ME WHEN THEY FIND OUT ABOUT ME HAVING A BREAK ....


Take Care


DaisyG

 

[Margarita]

I've let it go for now..... and will not mention it again until a few days before he's due to go

Yes, my mother was the same, saying she would not go made all the excesses in why not, just upsetting me more. I made the mistake of telling her to early few time, even thought I had read hear not to ,but back then if was hard for me to believe that my mother would not be happy for me to take a break away from her ,after all the caring I was giving her. I just wanted to make her understand , and I could not and the sad fact is she never well, so its me that had to learn why and except it . As like you I also had to let it go . Until the day, before she was due to go to respite or on the same day

 

[Cate]

Hiya Daisy

Just wondering how you are? Hope all is well with you?

Cate

 

[Rosalind]

I don't tell my husband until the day he goes to respite. When I did tell him in advance he got into a terrible state. He goes to the same place he goes for day care, and I just sent him off with a suitcase. Once there he was perfectly happy.

I don't think I would tell the inlaws. They are no help to you, so why let them into your life at all? If they find out, just say you needed some time off, and as you did not feel you could ask them to have hubby you made other arrangements. Unless they are frequently in touch, do they need to know at all.

You seem to let them needle you. I know it is easier said than done, but you must build barriers so they can't get at you in this way.