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

[Grannie G]

2pm approx............
I was on the phone and I heard the front door open. I looked, but didn`t see him go, so carried on with the phone call. And then, a couple of minutes later, I saw him walking back up the drive. He had no coat on.

I went to greet him at the door,
S `Where have you been?`
D `I went to the station but no-one was there. I want to buy a ticket to Manchester.`
S `Why didn`t you put a coat on it`s cold.`
D `I`ve only been out a few minutes.`
S `Go and sit by the fire and I`ll make you a hot drink`.

So he went into the living room and I went into the kitchen to make a drink.

He came into the kitchen....
D `Are you Sylvia?`
S `Of course I am.`
D `I`ve been looking for you all day.`
S `I`ve been here all day.`
D `I`m so sorry. I didn`t know who you were. Now I know.`

 

[Grannie G]

And again......4pm.....

D `When are we going to Manchester?`
S `We`re not going. You are not well enough.`
D `I`ve got to go. I`ve got to see my family.`
S `All right. Do whatever you need to do.`
and I walked out of the room.

When I went back he had his wallet in his hand and tried to hide it down the cushion.
S `What are you doing?`
D `Nothing.`
S `Why are you hiding your wallet from me. Am I such an ogre?`
D `I`m not hiding it, I need to count my money to see if I`ve enough to go to Manchester.`
S `I`ll go into another room, if you want, so you can count in private.`
D `Don`t be silly. I`ve counted it now.`

 

[gigi]

Sylvia,

I'm so relieved for you !!!

Hope the evening is better than the day..

except it's "sundowning" now..

Love Gigi xx

 

[connie]

Sylvia, just sending you a hug. Every admiration for your patience.



Take care now, love n'hugs

 

[Grannie G]

Thanks Connie.
Patience is wearing thin...............have threatened him with Social Services this evening as he was going to go out. It is 6 pm, a howling gale is blowing and it`s dark. He said he`ll go tomorrow.

 

[Grannie G]

I went to the toilet and when I came out the front door was wide open and he`d gone. In his slippers with no coat.

I took his coat and was going to follow him but couldn`t see him anywhere, didn`t know whether he`d turned left or right at the gate, so came back in.
I phoned my son to warn him, and he has just phoned back, he is there.
They are going to keep him there for a while. If he wants to stay the night he can do. They are just going to try to calm him down.
Thank goodness it`s Friday.

Sorry if I`m driving you all mad with this. Please ignore it if it`s getting too much, but I need a record of events.

 

[jenniferpa]

Thank god he found his way to your son's (and thank god they were there). Hopefully he will stay there tonight and you can have a bit of a break from this.

Love

 

[connie]

Sylvia, I know you post to keep your record, but we will always be concerned.

Today has been such a troubled day for you both. Sincerely hope that Dhiren feels more comfortable in himself tomorrow. Stay strong.

 

[Whiskas]

Sorry if I`m driving you all mad with this. Please ignore it if it`s getting too much, but I need a record of events.

I should think it's you who is being driven mad Sylvia, but you have such patience. I hope you get some sleep tonight I'm sure you need it.

Love and hugs
Cathyxx

 

[gigi]

except it's "sundowning" now..

Why oh why oh why did I say that..

So sorry, Sylvia..this really is a new turn of events..

Hope it all settles and you have a peaceful night...

Love Gigi xx

 

[Skye]

Dear Sylvia

What a terrible day you've had! I can't imagine how you cope with it, day after day.

I hope Dhiren stays at Paul's, but didn't he want to come home to sleep the last time he did that?

I do hope you have a better day tomorrow.

Love,

 

[sue38]

Oh Sylvia, what a terrible day for you both. I have just logged on and read all of today's events as they have unfolded.

You do know that this would have happened if you had stayed in Manchester and even if Dhiren had stayed in India, don't you?

At least Dhiren was able to find his way to Paul's and probably tomorrow will be happy to be home with you.

Until then, sending you both much love.

xx

 

[Grannie G]

Thank you.

Paul brought him home before 7. He had asked to come home. he looked shocked, dazed, confused. He wouldn`t speak to me apart from saying he wished he was dead. I still cannot get eye contact.

Paul will not tell me everything that was said, so I presume Dhiren was highly critical of me.

Dhiren asked to see a psychiatrist, but I do not want him to be admitted for assessment and told him why. He accepted what I said.

He is dozing on and off, in no fit state to talk and frankly neither am I.

I will see how he is over the weekend, and decide on Monday what we will do next. Hopefully it will all have blown over by then.

 

[connie]

So pleased he is home with you Sylvia. He does sound in such a confused state.

He is dozing on and off, in no fit state to talk and frankly neither am I.

You must both be exhausted. Hope you both get a good nights sleep.

 

[Skye]

Sylvia, it sounds as if these episodes are escalating, and are becoming increasingly upsetting for Dhiren.

Do you think it's time to ask for help, for both your sakes? I know it's not what you want, but.......?

 

[Grannie G]

Hazel I don`t know what help I can ask for.

If anyone came to the house Dhiren would ignore them ,go into another room or go out. And if he went to a centre, even with me, and didn`t like it, he would walk out.

He won`t even come to the AS and Memory Clinic support groups now. I go by myself.

 

[lesmisralbles]

I have been watching for a while

I- Oh this is bloody awefull - I have to watch everything I say - WHY ? been told off before on this site.
I cannot wallow anymore, did that, been there, got the tea shirt. I have cried buckets and buckets. No wonder when the SW saw me he/she said you need a break, well I did have bag's, under, bag's, let's get it right kangaroo pouches under my eyes. I NEED HELP
Ron has got some sort of dementia, Lewy body - whatever. It does not alter anything.
All I know is I NEED HELP.
Yes, I can get it from Social Service - stuff them. Big brother, as I have said before, the social worker we have now, well I call, him/her wet lettuce person, and as much use as a chocolate teapot. I WANT TO LOOK AFTER RON, FOR AS LONG AS I CAN, LET US HOPE IT IS FOREVER. I do not need social services telling me/us what to do, we have managed ,to manage our lives up to now. We have been on this earth for, well between us 143 years. And after all, I am 23 years younger than Ron. So TP people -anyone there taking the challange, do you have any help you can give me. Carers package, I am 60, but have been told I can have help. Anything. Advice on anything that will help Ron to have a more active life. You see HE is still with us, and I mean in his mind, so how can I keep him with me longer. Can we have the money the goverment would have to pay to keep Ron active, can we choose how to spend it etc. Can I let him have the freedom he wants ?
A dear person, told me tonight - Bird's of a feather flock together, but Wallower's keep wallowing and just make each other worse. I will never be a Wallower. But any bird that want's to form a flock, well I will join, after all strengh in numbers.
Sorry to go on.
But feel like fighting now, done with the Wallowing.It is for MY RON
Barb

 

[TinaT]

Barb, I've sent you a PM.

Sylvia, God Bless you, you are an absolute SAINT and I take off my hat to you.

When Ken is on the ward, he 'steals' slippers and shoes. I find an assortment of them every time I go into his bedroom. Or I have to go all over the ward and check where his shoes are. They could be on someone else's feet, in the toilet, in the lost property, anywhere! I have written his initials in white nail polish on the soles of his footwear in an effort to keep track of them. The fact that he shares a bedroom doesn't help as he and his fellow bedroom companion steal each other's shoes/slippers.

I've had Ken home all day for a while now, and his obsession with shoes is very hard to take! He has to go into the bedroom and explore the boxes of shoes under the bed every 20minutes or so. He then comes out wearing such an assortment or with one shoe on and one slipper on, or has found one of my shoes and is wearing it, that it would be laughable if only it wasn't a constant obsession he has. I would happily let him potter all day long in this way but he knows something is wrong when he is wearing odd shoes/slippers and then cannot settle, sit or talk until I take over and try to put things right for him again. This is easier said than done as when I try to point out to him which are the matching shoes and put them on his feet, he is still constantly worried until he then has to go through the whole procedure again. I've tried hiding all the shoes so that he only has his slippers but then his anxiety that he hasn't any shoes gets to him and he constantly wants to go out to buy some shoes. His 'sundowning' takes the form of escalating this anxiety which progresses from shoes fears and worries into a fear he can't explain and which cripples him with anxiety. It is terrifying to see the extent of his suffering.


I take Ken back to the hospital at 7pm each evening and then get some rest and peace. God bless you, you have it 24/7. As I say, you are a saint!! You must have been at your wits end when he went off tonight in such terrible weather.


Why your man is obsessed with Manchester and mine with shoes is a mystery only the Gods can tell us the answer to. All I do know is that it is very hard to live with the same, repeated obsessions day after day and you are a saint in the way you cope with all this.

xxTinaT

 

[Grannie G]

Dear Barb,
You ask for help. What kind of help do you want? What kind of help would you accept?
Like me, you want to keep your husband at home, but you are having a hard time. It`s not a case of wallowing, it`s stating a fact.
But is there any help available that would be acceptable? If you have anything definitie you know would help you, I would love to know what it is. People say I need help, but I don`t know what to ask for. The help I know is available is not the help I can accept.
Love xx

 

[Grannie G]

Dear Tina,

Ken`s obssession with shoes must be wearing indeed. Now managing that requires patience.
But you are as patient with Ken as I try to be with Dhiren. We cannot choose the obssession but we just have to cope with it as best we can.
What`s the alternative?

It`s the fear that makes it so upsetting to witness. It`s the awareness that something`s terribly wrong. It`s the inability to accept our solution, that becomes so frustrating.

I ask him to try to relax, to try not to fight whatever is driving him, and he agrees. Then he forgets. Whatever I suggest during peaceful moments are accepted, then forgotten.

But when the `demon` takes over there`s no acceptance, no agreement. I become the enemy.

It took Dhiren a long time to settle last night. He still wasn`t making eye contact and I still didn`t know how he saw me...friend or foe. He went to bed and I stayed up for a quiet cup of tea and a think.

1am.
All the lights were on again and he was searching again, but this time very quietly. I went to help him, his eyes were full of tears, he couldn`t find his wallet and wouldn`t be able to get home without it.
So I found his wallet and he thanked me as if I`d saved his life. I suggested he put it on top of his bedside cupboard so he could see it all the time, which he did.
In the few seconds it took to take off his slippers, get into bed and turn out the light, his confusion returned,

D `I can`t find my wallet`.

He wasn`t happy leaving it on view on the cupboard so got up and started pottering about again. I gave up and went to sleep.

I am no saint I can assure you.

Love xx