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

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Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Hello Gigi

I have been helping him to his feet every morning for a long time. I have asked the therapists if there are any aids other than the bed lever to help him but there don`t seem to be.
I also have to help him to his feet from the chair, night time only , particularly when he is tired , and from the table after meals. He manages more or less through the day.
So it will be a downturn or the additional meds. Catch 22 again.
 

gigi

Registered User
Nov 16, 2007
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So it will be a downturn or the additional meds.

Or a bit of both...the sad thing is that it restricts your freedom even more. Once Eric started having falls I felt I was on 24hour alert and it didn't do me any good...:(

Now I realise I tried too hard to keep him safe...I'm sure you'll be far more sensible about this than I was..:)

Hope the visit goes well today, Sylvia..everything is crossed for you. You need and deserve a rest from all this.

Let us know as soon as you can..:)

Love xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Thanks gigi.
I hope you`ll soon be posting on your thread. I think we`re all longing to know if the new bed was a success.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
The home was good. It looked good, it smelt good there was hustle and bustle, lots of small sitting rooms, a noisy room, a quiet room, a fine skills activity room, a motor skills activity room, a treatment room, a dining room and a large enclosed garden .
All the pointers were there.
And it is full.
Because it is oversubscribed, there is little scope for respite care rooms but if one becomes available in the next few weeks the manager will contact me.
And that`s about it.
We visited two more homes just to see. One recently fully refurbished was not registered for dementia but was applying.
The other did have people with Alzheimers but were not happy about Dhiren`s wandering. It was sea facing and a short walk from the cliff top.

We talked a lot driving between homes. I was worried about the fall this morning and any possible link to the medication. Terry was also worried but said it was impossible to define whether it was due to medication, a downturn or a combination of both.
His biggest worry, shared by the consultant, was Dhiren`s constant wandering. If it continues to increase, it might come to the point where Dhiren was at risk to himself and also to others. And that might mean a Section.

When I arrived home both Dhiren`s face and the carer`s face told me something had happened..
The carer said she has promised Dhiren not to tell me and she didn`t want to break her promise to him so she had logged it for me to read.

Mr G became a bit unsettled at 12.00. He kept coming in and out of lounge, bedroom and spare bedroom..................I told him Sylvia would be back in an hour.
He came into the kitchen and told me he was concerned about his finances and he needed a job. I asked him to sit down and have a chat if it would help and he did. I made him a cup of tea and we chatted for about 20 minutes.
He mentioned how life was very difficult and how he feels so down all the time but he hasn`t got the guts to end his life. He feels he has nothing to show for all the hard work he has done over the years. I encouraged him in that he has been a very successful businessman and that he now has this lovely bungalow to show for it. He was surprised to hear it was all his and Sylvia`s. He mentioned a number of times how things would be better if he could go home.
We spoke about Sylvia, how good she is in taking care of him, but he feels he can`t ask her for anything as it would burden her too much.
I said she would want to know how he was feeling because , as his wife, she would want to help him and do anything she could to make him feel better. He was surprised to hear she was his wife.
He has asked me not to say anything to her.
 

jenniferpa

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Jun 27, 2006
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Nothing new to you really in the log, but creative of the carer to work out how to let you know without actually telling you.

I'm sorry about the home (well not sorry it's good, but sorry it's oversubscribed). I find it odd that the other home that is applying to be registered for dementia is concerned about the wandering issue in that I would have thought they should already have solved that: that's hardly unique to Dhiren.

As to the fall - my mother's legs just used to give out on her for no identifiable reason. You know if a knee gives way? No pain, just no rigidity? Well it was like that but both knees.
 

TinaT

Registered User
Sep 27, 2006
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Costa Blanca Spain
Absolutely heartbreaking Sylvia! What can I say. Dhiran is just about hanging on in the confused and upsetting world he lives in. Absolutely heartbreaking both for you to read and for him to have experienced.

It sounds so much like any post I could make about Ken's daily fears, except that Ken does not have 'another Tina' in his mind.

You seem to be hurtling rapidly towards some kind of changes taking place, not of course caused by you, but by the progression of this dreadful, dreadful disease. My heart goes out to you Sylvia and to your distress.

xxTinaT
 

burfordthecat

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Jan 9, 2008
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Leicestershire
Sylvia

I'm pleased that you found the home to be "everything you expected it to be". A shame that there is not any immediate places. I think that in itself says something quite positive about the home.

I do hope that a place comes up sooner rather than later.

I found Dhiren's conversation with the carer very sad. It must be awful, not being able to make sense of the world around you, as well as frightening. I will say again, you are doing a fantastic job with Dhiren, taking care of him as you do. I've got my fingers crossed that you get the respite you so deserve and need and that it happnens very quickly.

Love Carina x x x
 

gigi

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Nov 16, 2007
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Well...Sylvia..what can I say?

Things are changing quite dramaticalllly. But you have a network of support in place that you've never had before in the form of Terry and your sitter.

And that can only be good. At the moment it's difficult to see the way forward with it all. It's a shame about the CH...so often the case with the "good" ones.

I'm concerned about you both..but that doesn't help you much..

Love xx
 

Mameeskye

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Aug 9, 2007
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NZ
Sylvia

(((Hugs)))

I hope that there is the possibility for respite for you in your preferred home soon, if just to give you a little time to yourself to accept what is, that it is nothing you can do anything about, just the non-stop progress of an awful disease. I know you understand it and you know that you need a rest. I hope that it comes soon for you.

This is so difficult as there is nothing we can do to prevent the downward spiral that is dementia, just gather our strength and be there as the spiral goes downwards, increasing its speed, accepting each good thing and enjoy them whilst understanding that what is bad today is good when we look at it tomorrow.

You and Dhiren and Paul and family are in my thoughts as you travel through this hell that is dementia.

Love

Mameeskye
 

Bookworm

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Jan 30, 2009
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Co. Derry
Others have said all that I'd want to say really but just want to add my good wishes for you & to say I am most honoured to be able to read your story & share the burden in some small way, xox
 

living in hope

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Dec 14, 2008
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Hi Sylvia,
So sorry to read your post, Brian has intimated in the past that he wants it all to end and even said something similar yesterday in hospital. No wise words just empathy!
Love
Lorraine
 

Nan2seven

Registered User
Apr 11, 2009
2,525
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Dorset
Ah, Sylvia, what a sad, sad quote. Sad for you to read and for Dhiren to have been feeling. This far down the road and he is still sensitive to what might hurt you, upset you - even if he is struggling to grasp at times what exactly is your role in his life. Do so hope the respite problem is resolved for you soon. Love, Nan XXX
 

Helen33

Registered User
Jul 20, 2008
14,697
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Hello Sylvia

I must admit that I felt very much the same as Gigi. There are some positives that were definitely not there before and I think it was excellent that Dhiren was able to confide in the sitter. I am delighted that the home is all that you would want and, of course, very disappointed that you can't avail yourself of their services immediately;) Did you get yourself firmly on the waiting list?

I imagine you must be shattered with the days events and the week that has led up to today. I am convinced that Dhiren's care is as good as it gets by you and your support network considering that no one has that magic wand. I know that you know it too:) It is the care of you that is primary at the moment because it doesn't get any easier with a progressive disease does it?!

Lots of love xx
 

Skye

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Aug 29, 2006
17,000
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SW Scotland
Hi Sylvia

That home sounds absolutely wonderful! Don'twant to dampen your spirits, but did you ask about a waiting list? Because if they have one, the chances of getting a respite room are slim, there's always someone ready to jump.

Also, did you ask Terry if SS have sponsored respite beds in any of the homes in the area? I know ours have them in two homes, and the chances of getting respite in any of the others is remote, because they're always full. Of course, that might not apply in your area.

Once again, Dhiren's awareness amazes me. 'Ending it all' isn't usually a problem in dementia, because once people get to the stage of wanting to, they're too far on to know how. I know that's not the case with Dhiren, and it must be a worry for you. It is beginning to look as if a section might become inevitable. I too would be very concerned about the home near the cliff.

Sorry it hasn't been as positive a day as you'd hoped, but I'm sure that with Terry's support you'll find a way through this.

I do hope Dhiren isn't going 'off his legs', that might help with the wandering, but presents whole new problems.

It doesn't get any easier, does it?

Love,
 

susiesue

Registered User
Mar 15, 2007
2,607
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Herts
Hi Sylvia

I am keeping everything crossed for you in the hope that you will soon hear from the Home you liked so much and that they can offer you some respite soon.

Sending you lots of love and (((HUGS)))
 

TinaT

Registered User
Sep 27, 2006
7,097
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Costa Blanca Spain
Ken has also said he wants to 'end it all'. He has on separate occasions over the last two years told myself, his son, his brother in law, and the manager of the care home. Like Hazel says, he doesn't have the capacity to be able to do this thank God

We have, up to now, been able to change his mood by convincing him that things are not so bad. This for me, involves telling him that he is getting a little better and things will change - don't ask me how I do it but at the time I'm telling him this I convince myself that it is true!

Also Ken does not say it often. It is a feeling which comes and goes but always, just under the surface, I can see the deep sadness he feels at his loss of control over his life and his actions.

Heartbreaking and desperate words from anyone, especially so because it expresses so clearly the underlying despair and desperation which I cannot change, doctors cannot change and which gets worse as time goes on.

xxTinaT
 

twinone

Registered User
May 19, 2008
269
0
england
I feel so sad for you and Dhiren.

The only upside is that he has got a carer who he trusts and who he can confide in.

I truly hate this disease and what it does to us all - its heartbreaking every step of the way.

I hope you manage to get some respite soon.

Lots of love
Janet
 

SusanB

Registered User
Jan 15, 2008
155
0
Hove
Hello

Hi Sylvia

I've only posted once before on your thread but my own Mum's behaviour is disintegating fast and given that I've read all your posts from day one I know what you're going through but in a minor way compared to your experience and with that of many of other other posters on here. I suppose we all have our crosses to bear.

Seeing someone you love decline so much (and even more, if I may say, that it's your beloved husband) must break your heart and I'm pretty confident to say that it has the same effect on your TP friends too. Believe me that you have friends who care about you even though they don't post and who of course have never met you. I know that you're aware of that but just wanted to confirm it!

A transition phase for you.

There's a film that came out a few years ago called "Waiting to Exhale": its emphasis is on that feeling that you can or should breathe out when you meet the person who's right for you. I relate to that! But it's also a propos to your situation: your posts invoke a continual intake of breath. When do you get to veg out in front of the TV with a glass of wine, to laugh with your friends, your son, enjoy a meal out or at home and..."exhale".

Much care...and best wishes. I considered Broadstairs for a holiday with Mum last year but couldn't find any hotels with disabled facilities! I'll try again...it looks so lovely. It would make a change from Brighton, Mum loves the sea.

Susan
x
 
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sue38

Registered User
Mar 6, 2007
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Wigan, Lancs
Hi Sylvia,

I'm glad the home was as good as you'd hoped, but sorry that of course it's so very popular.

My dad often threatened to 'shoot himself', and on a couple of occasions we were worried he was serious and was going to do something about it. When we told the consultant he immediately recommended residential care. You may find matters taken out of your hands, which may or may not be a good thing. :confused:

It sounds like it's been an exhausting day and I hope you have a peaceful evening.
 
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