Translation of my post from January 9, 2014:

Hello everyone, especially to those of you who are parents!

I have just been to my family for a week. My dad and brother have probably not accepted or understood my disability, especially not  the cognitive part. I try to give them information, but I´m  constantly questioned and criticized in a negative way. When I ask my dad what time I have to get up in the morning when I'm home, I don´t get a clear answer, just a "Sleep until you wake up", which to me is very vague and unstructured. I´m  afraid I'll wake up late so that the whole time planning doesen´t fit,  which would be extremely stressful for me. He also scolds me up if I according to him,wakes up too late, so my solution to the issue is to try to structure things up myself, which just leads to a lot of stress. I set the  alarm between 9-9.30 each morning. Then dad asked:

- Are you up?

-Yeah, I set the alarm.

- Why?

- For us , so we can  keep up with everything.

- You really don´t need to do that

- Yes, I have to.

One day he said:

It's 3 minutes left until lunch

- I'm going to be late (I got up a quarter too late after my breakfast- nap.  Was alerted about the time that was left until  lunch quite late, need a reminder 20 minutes before. I sat in the bathroom and was wearing everything except the pants when I got the reminder ).

- It´s not my fault. It is  you that  have set the time.

- I didn´t say that it was your fault.

 - It is you that has set the time.

- Yes, I know ... Keep the food warm.

- Stop babbling!

I don´t babble! I'm just answering what you say.

If I tell my father I'm tired  he says:

- You go to bed on time in the night and you also sleep a while during the day.

- I wake up so early in the morning.

- Then you've slept enough.

- No one has slept enough after four hours.

- Otherwise, you would easily have fallen asleep again?

- But I got hungry ...

- That you can´t sleep is probably bacause you fell asleep several times on the couch the other night.

- I do not usually have trouble sleeping if I just slept a while on the couch,  it´s if I have been lying on the couch and slept for several hours in the evening that´s a problem.

If I am happy that I improved my sleep, he can say:

- You can turn and twist everything if you want to (according to him, it's only right to go to bed before midnight., He finds it difficult to be happy for small improvements, so for them I try to be happy  myself and really say them out loud so that he can hear, otherwise he would manage to depress me).

One day I wanted to  visit a friend and I was a little worried about not being able to go there in the evening because I had such a headache all day and I said: - We may need to move the visit, but I hope I don´t have to.

- Why?

- Because I've been looking forward to it.

-From one day to another? To me it sounds that it would have been easier for them to meet you on a friday, but you didn´t want it.

- We  actually discussed several options.

When I tell my dad that I have limited energy and starts the day with perhaps half as much energy as him was due to my cognitive impairments  he asks:

- How do you measure it?

When I say I'm going to need my rest whether I slept well or not, he asks:

- Who said that?

- My psychologist.

One day when we were discussing training and diet I told him that I and  my dietician believe that I do my best that have both swimming and gym- training during the week.

He said:

- Do you think that's enough? You  do anything to avoid working out! Do not want to ride a bike either, then? It is  human nature to be lazy! Then he made up a bunch of reasons about that I thought soreness was painful and therefore i  didn´t  bother to work out, which is definitely not true!

As I sat in front of  the TV one evening he came in and said:

- Why are you sitting like that with your  head? (I always lean a bit to the left) Up with your head! Put your hands on your knees! Put your arms up! Here I am getting slightly sick of listening to him and I´m  also tired because the time is  8 pm so I say:

- I actually sit here!

- I can´t say anything to you!

- It depends on how you say it!

- No, it depends on you!

When I later wanted an orange and wanted to eat it with my  right hand  he said:

- No, take the orange-slices with your left hand!

When I tell him that I have bad short-term memory and give him examples of how it shows he questions my example with - I don´t understand! or - Anyone can have bad short-term memory in the situation you describe.

When I tell my brother that my brain's interpretation center is not working properly  he says:

- It's not about any interpretation center! It's a matter of maturity! Here I got  sincerely sad and went to my room and  cried for an hour. The list goes on ...

I have offered my dad and brother to participate in a meeting with my psychologist about my cognitive impairments so they can understand me better. Dad's answer is:

- Well, I think you have explained it  quite well. I think I understand.

 My brother's response is: - Is it necessary?

Exactly all the details are not included here. The post would be too long and I can´t  write anymore right now. I want it to be clear that this is my personal experience of the situation.

Thanks for reading!
 

Från
    Kom ihåg mig
URL

Säkerhetskod
     

Kommentar

Hej Allesammans!   Nu var det länge sedan jag skrev. Mycket har hänt i december och januari: Jag har fått en ny säng som är höj- och sänkbar, en ny duschstol och en ny rullstol. (Eller rättare sagt ett provexemplar av nya rullstolen som jag får p...

Hej Allesammans! I helgen har min kille varit och hälsat på. Han är jättetrevlig, rolig, omtänksam och mer därtill. När han såg mig förflytta mig från soffa till rullstol sa han ? Ramla inte?. När vi sov så vaknade han till ibland och lyfte huvud...

Hej Allesammans!   Inatt har jag sovit jättedåligt. Gårdagen var jobbig på många sätt. Jag hade en personal som villr ta upp en sak med mig vid 20.30 på kvällen. Jag kunde inte somna förrän vid 3.30. Tidigare under dagen hade jag fått be en annan...

Hej Allesammans! Testade att sitta i Allrummet och spela Yatzy med en annan brukare då den arga brukaren också satt i Allrummet och var lugn. En stund senare var den arga brukaren arg igen. Denna gång sa hon att personalen inte varit in till henne...

Hej Allesammans!   Jag är rädd på mitt boende. Orsaken är att den arga brukaren är så aggressiv. Jag har varit rädd sedan januari/ februari då den arga brukaren hotade den dåvarande personalen med att hon skulle skära halsen av henne. Sedan dess ...