A life in the day of.........................

[Mameeskye]

Hi Sylvia

Just catching up.

I am glad that Dhiren was a little better today when Paul visited. I am sorry for what you had to go through yesterday. It is a sad fact of dementia that it gets you when a poor behaviour rears its head after an absence. It is just another part of the grief that carers have for those they love with this illness.

Thoughts go to you and your family.

Love

Mameeskye

 

[living in hope]

Hi Sylvia,
Sorry to read your posts and hope you next visit is much better, I found the first few months that Brian was in the home very traumatic and was often in tears, I now try and accept each day as it comes but sometimes its so difficult and I end up in tears.
Sending love to you and Dhiran,
Lorraine

 

[guess who]

We don't know one another and I am new to this site. But I feel I know you a little from reading your story and also from your frequent wise and helpful postings. Thank you so much for turning your personal tragedy into a fountain of hope and encouragement for others like me who are not as far on as you are on the AZ journey. I do appreciate it. There's the line in an old hymn that says something about 'fresh hope for today, new strength for tomorrow' which is my wish for you for today.

 

[JayGee]

Hi Sylvia
Sorry I missed your post on your visit to Dhiren, not what you wanted from your visit but a reassurance that the decision you made was absolutely right and actually long overdue.
Even though Dhiren is looked after safely the stress factor is still there for you. It's the same with our children even though they are adults and away from home you never stop worrying and thinking about them every day.
Hoping your next visit is joyful
love June

 

[Grannie G]

The home owner opened the door to me today and I asked if I could talk to him about Dhiren.

He took me down to the office and I was pleased to see the manager was also there.

I asked about Dhiren`s weight. It is being monitored and recorded that he has lost weight.
I asked if he eats better for them than he does for me. They both said he does. The owner feeds him regularly, talks to him about India, they like each other and Dhiren eats his food.
So in future I will not go at mealtimes.

It seems there was talk of food/fruit and Dhiren said he likes Mangoes. He told about the mango tree he had at home. One of the carers bought him a mango and it was wondered if that triggered off thoughts of his Indian home and his mother.

There will be a Best Interest meeting about safety in bed for Dhiren. Everyone concerned will be invited.

Then I went to Dhiren. He was really pleased to see me.
He wanted chocolate.
He asked the usual questions about going home and I gave the usual answers.
He said he went out looking for me but couldn`t find me.
I told him he mustn`t worry. I know where he is and will always find him.
He told me I could sleep in his bed as he didn`t want me walking round the streets.
I said `all right`.
He wanted chocolate. It was an hour away from lunch/dinner time and I didn`t want to spoil his appetite so gave him a finger of chocolate. He kept asking for more .

Terry [CPN] came. Dhiren was pleased to see him. Terry told me Dr K had been to see him and another resident. He noticed how much weight he has lost.
I asked if the antipsychotic could be reduced further. Terry will ask Dr K.

As dinner time drew near I prepared to leave.
I was going to Yoga.
Dhiren wanted to come too.
I told him it was ladies only and he accepted that.
He asked how long I`d be and I said not long.
He asked me to bring him some more chocolate when I came back.
I said I would.

I gave him a kiss and left.
He hadn`t mentioned his mother once.

 

[BeckyJan]

Hello Sylvia:

The same reply as you gave me - I can imagine how you felt going home!!

Love

 

[nellbelles]

All I can send are (((hugs))

 

[Marmalade]

Words can't thank you enough

I came upon this forum while trying to research for a job interview. I have spent weeks reading medical publications and lots of fact sheets but when I found this thread and diary entries I was blown away.

I'd like to thank you all for your posts - I have so far read nearly 100 pages of them and through this have gained the most amazing education about AD and the day to day challenges faced and overcome by carers. My admiration for you all cannot be expressed in words.

I have cried and laughed with you as I have followed nearly 3 years of postings and am humbled by the sheer guts and humanity you display.

I hope that you do not see me a voyeur. I am a little worried about that - I feel guilty that I am lucky enough not to be facing these issues myself. I hope that I get the job and that I can provide some practical help to some but even if I don't, I want to thank you for the most incredible journey and enlightenment.

 

[Georgina N]

Dear Sylvia,

Catching up with your thread , re.Dhiren's weight loss: I experienced the same problem with my husband David .

Despite him being in a wonderful nursing home, he lost weight initially for the first few months... alarmingly so - he was on the special build up drinks, ensure , calogen etc.

However, he has recently gained weight, BUT..... he eats far better when I am not present, .I have come to realise that when I am there I can be a distraction..... even when I encourage him
to eat.

He does seem to respond to the routine and structure of the nursing home, although, as I say , it has taken about 5 months for him to settle to this.

Thinking of you with love, xx

 

[Winnie Kjaer]

Hello Sylvia,
Lots and lots of (((hugs))) from me too.

Thinking about you and Dhiren
Love x

 

[Izzy]

Thinking of you tonight Sylvia. Izzy x

 

[larivy]

the home sounds like they are really carring and Dhiren sounds like a man out of my own heart (chocolate lover) sending you a hug and some chocolate for Dhiren love larivy

 

[Bookworm]

Hmmm - what a precious lady you are Sylvia - always looking for the best for Dhiren. It is good to know that weight is being monitored. He is diabetic - do you know anything about his blood sugars - do they do them once a day or week?? Weight loss could be a sign of perhaps loosing sugar in the pee?? Does he seem very thirsty apart from the craving for chocolate?

Don't think there is a great need to worry about this - just a "by the by" comment......love, Sue

 

[milly123]

dear sylvia just catching up with posts sorry to hear the change in dhrien he was doing so well i find this with harold some day,s he,s in a lovely mood and other day,s terrible in every way hope your next visit will be better thinking off you both milly

 

[Grannie G]

Thanks milly. Thanks everyone.

Hi Sue.
I will ask all this at the Best Interests meeting. He does not have a thirst, he has to be persuaded to drink. [By me anyway]

 

[Grannie G]

Today`s visit

I arrived after lunch. Dhiren cried when he saw me. He thought I wouldn`t be able to find him.

And then....
D `I wrote a letter to my mother but she didn`t reply. I don`t know what has happened to her.`
S `Perhaps she is too old to read and write now. If you`re 77, she muct be nearly 100.`
D `That`s true.`
And it satisfied him.

I gave him chocolate. He enjoyed it. It distracted him.

Then he was worried he had no hair, he kept feeling the top of his head. He must have been seeing himself as he was years ago when he still had hair and he still had a mother.

He was searching in his pockets.
S `What`s the matter?`
D `I can`t find my cigarettes.`
S `You stopped smoking over 25 years ago.`
D `I don`t care I want to smoke.`
S `They are not good for you and they cost £5 for a packet.`
D `If I give you £10 will you get me two packets.`
All the time I was there he kept asking for cigarettes. A carer gave him a cup of tea. He took her hand, `Will you get me some cigarettes.`
He was taken off to be toileted. It distracted him.

Another carer was going off shift. She came to say goodbye and sat waiting for the handover.
She was telling everyone about a job she had on minimum wage, where she was given more and more responsibility . I asked if she was given extra pay for the additional responsibilities and she said no she wasn`t.
We didn`t hink Dhiren was following the chat until he said `B****Y B*****ds. Everyone burst into laughter.

So I came home having had a good visit.

 

[Bookworm]

Ah

I've just commented on the Blog - but it is so good I'll put it here too - I'm so very pleased that your visit was good, also that you have reached the one before 100 blogs!! & I hadn't noticed you are over 24K with the posts!! Well done Sylvia!

 

[Helen33]

I'm so glad that you had a good visit Sylvia. You manage so well when Dhiren is in another reality with his mother and his hair. Perhaps you can remind him that many Indian parents shave their childrens hair off as he might identify with it in his own reality for that moment. Maybe you could also get him one of those artificial cigarettes that seem to blow out smoke and tell him that is all you have. They only cost pence in a chemist so it won't matter whether it works or not

love

 

[donkey]

dear sylvia, so good to read your posts, it always makes me want to give dhiren a hug he is such a sweetie, im glad you had a good visit today, you could tell dhiren they dont sell ciggies anymore as there bad for you . i smoke incidently xxx

 

[Grannie G]

What a good idea Helen I have ordered a fake cigarette for him