Please..if there is a god out there..

[Grannie G]

In my heart I wouldn't want Eric to go into permanent care. In my heart I don't know how much longer I can tolerate this life here at home with him.

Different problems gigi but the same sentiments. There is no ideal. That`s why the decision is so difficult.
But I know it would be wrong to bring Dhiren home as I am unable to meet his needs.
If you continue as you are, you will be unable to meet Eric`s needs too.
Please don`t let it get to that stage.
I am not happy with our situation, neither is Dhiren. But I do know this is a compromise which meets both our needs, as far as they can be met.

 

[Mameeskye]

Gigi

(((((hugs))))

I think the problem is that any relationship requires a two way flow of energy and with dementia this two way flow ceases. Where it can be easy to care when there is acknowledgement of the love, care etc it becomes difficult when dementia removes empathy, knowledge of who we are etc. from those we care for.

The strain of this mentally, combined with grief and the exhaustion from caring takes its toll. When there is no hope for the future it can be impossible to continue. You have a right to a life as much as Eric has. I also understand why you don't want Eric to go into care but when your own health starts to suffer it means that you will be unable to care for him at home. Perhaps a move to a home would give you the energy to share more fun with Eric rather than being beaten down by the mental torture (which is inflicted upon you, albeit unknowingly and non-deliberately on Eric's part).

If Eric remains at home, you need to have more frequent respite and daycare as options, but if Eric refuses your health will suffer and a Carer's Assessment has to take that into account.

You need to look after yourself to ensure that you can continue to support and care for Erik whether at home or in an assisted living facility.

Love

Mameeskye

 

[Skye]

Gigi, one more thought:

John has never been unhappy in care, and he responds well to his carers. I think Eric was similar when he was in respite?

If he no longer recognises you as his wife, only as his nurse -- why not let professionals do the nursing, and you can become his wife again?

I know it's not as easy as that, and I still suffer pangs of guilt, loneliness, aching to have John home. But any solution has to be the best for both of you.

Love,

 

[Linda Mc]

Gigi nothing to add to what others have said but I guess the time has come to put yourself first.

Do hope today's visits are helpful and you don't get a cancellation.

Love and hugs

 

[TinaT]

Dear Gigi,

Just to let you know that I so much sympathise with your situation. I've been there and I know what the bleak feeling is and how it just hollows you out. Of course you want what we all want, you want as normal a life as possible with your husband. The disease has robbed us of this! Not you, nothing to do with you.

The differing forms of the disease bring about such a wide range of behaviour. We are unfortunately the ones who have been dealing with the most challenging that can be.

I once read here on TP that no one can be forced to continue to be a carer. When you can no longer cope you state that you are no longer willing to live in this state to SS and they have to take over! A very harsh statement and one which has so much heartbreak behind it.

As I say you have my love, understanding and deep sympathy with you at this point in your life.

xxTinaT

 

[hazytron]

Dear Gigi

I too am so sorry that you are feeling so down. It seems a few of us, currently, have reached a similar way point, not knowing which way to turn and where this journey will take us next.
I wish we could all meet each other and shout, yell and scream, in unison, from the highest hill, and make ourselves be heard and show how desperately we feel for our loved ones and that we must have the necessary support.
Some chance!!!!!!!!
Lots of love
Hazel

 

[DeborahBlythe]

Sending you a hug, Gigi, and good wishes for the rest of the day.
x

 

[Christin]

Oh how I agree with so many. I am sending everyone a hug! Wouldn't it be great to stand on the top of a hill and just scream! I am wondering, in my case at least, if I am suffering from cabin fever. Do we all feel different when the weather is warm and we can at least go out to the garden?

 

[living in hope]

Hi Gigi,
Sorry to hear you have reached breaking point, as others have said, please put yourself first now, you have done your best and no-one can expect more, my thoughts are with you and i hope you get the support you need.
Love
Lorraine

 

[Nan2seven]

Dear Gigi - I don't know how I missed your original post yesterday. Have only just caught up with this thread and wish I could have added to it sooner. Not that I have anything profound to add to all that has been said. I do so agree with what has gone before, in particular with what was written by Sylvia, Mameeskye and TinaT.

I hope the meeting this afternoon has gone/is going as well as can be hoped and that something supportive comes out of it, and also the meeting with your GP this evening. Tell it like it is. Do not generalise too much. Dive into some of the particular instances. You face these every day whereas your GP and CPN do not. Someone earlier used the word relentless, and that is what it is.

Thinking of you and sending love, Nan XXX

 

[Beezed]

Dear Gigi,

I have only just caught up with this thread and my heart really goes out to you.

No magic wand or solutions just to say I am thinking of you and hoping you get the support you need asap.

Love,
Jeanne

 

[gigi]

Well apparently....

The CPN thinks I am depressed and has advised me to ask for antidepressants....

She thinks it will help me to cope with "things" better..

Eric is not demented enough to warrant permanent care. He is not violent or aggressive, nor does he wander.

And even if he lived alone he would not meet the criteria for permanent residential care. He would be entitled to a full care package at home, and that's it.

However, if he was self funding...wait for it...there would be no problem. He could go into permanent care tomorrow.

While she was very sympathetic about our situation, she had no answers and no further ideas for support. She reminded me that strictly speaking she doesn't need to keep Eric on her books as he is "stable" as far as his dementia is concerned.

That's it.

I don't know whether to laugh, cry..or take a long walk off a very short pier...

Now I'm just waiting for the GP to visit.

Love to all. And thankyou for your support and helpful comments.

xx

 

[Skye]

Oh gigi, I'm so sorry.

Not noted for her sensitivity, that CPN, eh?

I hope you get more support from the GP, I'll be thinking of you.

Love,

 

[BeckyJan]

Oh heck - you really could do without her. What about the Social Worker - is she a separate person with different ideas?

Lets hope the GP can be more helpful.

Love

 

[jenniferpa]

I'm so sorry Gigi - I simply cannot believe it, or any part of it. So Eric's OK to live alone? Which planet does this CPN come from? And since when is violence, aggression or wandering the only criteria for permanent care?

 

[susiesue]

That is ridiculous Gigi - once again this is more or less what I was told.

How exactly do they measure dementia? - the whole thing is a farce - if he was self funding then he would be demented enough!!!!- it would seem that dementia is measured by how much it will cost the LA

Well, I suppose I should be pleased that David does wander and is aggressive and would be self funding to start - it's what happens when the money runs out that worries me......

I'm so sorry Gigi - I really don't know what to say.

Love

 

[TinaT]

I wish I could have met the person who denied you the help you need!

The only thing I can suggest is that you ask for a full care package to be put into place and then take yourself out of the house.

Perhaps if a few care workers state the obvious as well as yourself, this may get things moving for you.

I would phone the consultant and ask for a reasessment. How do the people today know what his abilities are? Have they got an up to date Consultant's assessment. Have they got an occupational therapists assessment? Again, it's a mystery just how they reach this decision.

As to depression. How do they know? Are they medical doctors because true clinical depression is a medical condition! How are they qualified to diagnose this?

Most unsatisfactory and superficial assessment of the situation by two people who are not qualified to make the judgements they have.


xxTinaT

 

[Grannie G]

It`s not often I feel angry gigi.
But;
To offer a pill as a cure for being stressed out with the responsibilities of caring is exploitation of a carer to the nth degree.
The suggestion Eric would be safe at home alone, with a full care package is emotional blackmail.
I`m shocked and horrified, and deeply upset for you.

 

[burfordthecat]

Oh Gigi

That is unbelievable. Sounds as though you may have inherited the CPN who my dad had. Another thing which seemed odd is that she suggested that YOU need to take anti-depressants. Again that seems to be their stock answer to everything, with or without dementia.

I do hope that the GP is more understanding and you get the support you need.

Love Carina x x

 

[ella24]

Oh Gigi, that is ridiculous, and I bet you were so shocked that you couldnt give a suitable response (I think we've all got a few responses for her now )

Reactive depression (if that IS the case) should be treated by removing or ameliorating the stressors wherever possible, and the CPN should know and provide that relief - she should not be providing you with a suggestion of pills as the first answer....

Fingers crossed for later