There's no light at the end of the tunnel.

[gringo]

When you just can’t cope any longer, your much loved relative has to move into a CH.. The one you have been looking after, will now be cared for by professional CH, staff. Some may think that henceforth everything will be OK.
Well actually it won’t. life will never be OK. again. Leaving aside the inevitable and crippling feelings of inadequacy and guilt, you will suffer a different and more insidious kind of strain, having swapped physical stress for mental stress.
You visit. Some visits are good and some are very difficult. The difficult visits knock you down. And make no mistake, even the good days take their toll. Keeping a smile on your face come what may, will sometimes take some doing.
You can stop visiting, of course, and probably your relative will not even know. If you stop and think about it, you may conclude that your visits are mainly for your benefit. But you will never be able to accept that they aren’t doing anybody any good. If only for your own peace of mind, not visiting can never be an option.
Life in a CH. is a life apart and can be very distressing. The knowledge that your loved one (I have tried to avoid using that phrase, but…..) is in there 24 hours of each day and, unbelievably, is there for life, breaks your heart.
It’s not OK., there’s no light at the end of this tunnel.

 

[Jean1234]

When you just can’t cope any longer, your much loved relative has to move into a CH.. The one you have been looking after, will now be cared for by professional CH, staff. Some may think that henceforth everything will be OK.
Well actually it won’t. life will never be OK. again. Leaving aside the inevitable and crippling feelings of inadequacy and guilt, you will suffer a different and more insidious kind of strain, having swapped physical stress for mental stress.
You visit. Some visits are good and some are very difficult. The difficult visits knock you down. And make no mistake, even the good days take their toll. Keeping a smile on your face come what may, will sometimes take some doing.
You can stop visiting, of course, and probably your relative will not even know. If you stop and think about it, you may conclude that your visits are mainly for your benefit. But you will never be able to accept that they aren’t doing anybody any good. If only for your own peace of mind, not visiting can never be an option.
Life in a CH. is a life apart and can be very distressing. The knowledge that your loved one (I have tried to avoid using that phrase, but…..) is in there 24 hours of each day and, unbelievably, is there for life, breaks your heart.
It’s not OK., there’s no light at the end of this tunnel.

Oh Gringo
You sound as if you need a big cyber hug. You have done the best for your relative and visiting even when it is so difficult shows how much you care. Try not to be so hard on yourself. We all are at different stages of caring for our relatives but can feel along with you. Try to focus on your good memories and perhaps that will help to lift your spirits. Look at old photos and remember how you felt then, your loved one is still there in your memories. I know that looking at the photos does help me when I am feeling particularly down.

 

[tigerlady]

Oh gringo - I have just come back from visiting my husband and that is exactly how I feel right now - I am so depressed. I spent longer with him as it was a nice evening, and we sat in the garden but he never stopped saying "when are we going home" inbetween all the mumbo jumbo

When I got there in the afternoon, it was obvious he was in need of personal care - the carers said he hadn't let anyone do it this morning but he never willingly lets anyone - it takes 2 or 3 of them to do it - the truth is they were short staffed and didn't have enough staff to see to him. I tried to persuade him to let me do it but he wasn't having it. I think because they saw I was upset, they did him straight away, but it worries me how long they would have left it if I hadn't gone.

He is fit and healthy apart from his mixed dementia, and I just cannot contemplate years and years of him being there - its so upsetting. They say he's ok when I'm not there but how can I be sure? I hardly ever see them talking to the other residents now - they used to - and he likes to talk to the carers - just doesn't like being around the other residents.

I am sitting here in despair wondering what I can do

 

[Spamar]

On Gringo, ((((hugs)))).
Been there, done that. It was more stressful than looking after him at home.

 

[truth24]

Dear Gringo. You have expressed our feelings so eloquently. None of us are prepared for the reality of life when our loved ones have gone to their CHs. The upset of not knowing how each visit will be and not having them to comfort you when you return home after a bad one. Scarlett coined the term 'midow' which I think expresses exactly who we are. Sharing your grief.

 

[Saffie]

I agree with every word you have written but then you could probably guess that I would.
The guilt never goes away and the heartache remains forever.
I feel for you Gringo. x

 

[nannylondon]

I feel for you Gringo and totally agree with you it doesn't seem to get any easier from visit to visit you don't know what to expect. Have no words of advice but sending you a hug.

 

[1mindy]

Oh Gringo you are so right,nothing will make any of it better. Our partners are gone and we are left to make something of our lives alone. Talking to a neighbour today I said I now visit as a friend, someone who cares about him and gives a small bit of my time to him just a couple of times a week. Yesterday he told me he would never get married now, although plenty of women are after him. I wondered if he was warning me off. So I come home alone to my lovely house with great views and sit and wonder at the life we planned for some 30 years ago. No one understands how lonely we are even with good family and friends.There is no point in being bitter and if only,we just need to get on in whatever way we can. My heart goes out to you.

 

[LYN T]

Mike, I have to agree with you-the 'light at the end of the tunnel' doesn't exist. Not even a little flicker. Not even the tiniest night light that faintly glows. It's all darkness.

Yes, our visits do appear to be for our benefit but what if one day, for one moment, even for a second our loved one fleetingly recognises us as the person that loves them? That's one reason I visited Pete along with checking everything was shipshape.

No life will never be 'ok'again-how can it be? Until a cure is found Dementia will always win.

I'm so sorry to read that you are struggling. It's all so difficult isn't it?

Love,

Lyn T XX

 

[Scarlett123]

Oh Gringo - I feel your despair in every word and phrase. Those who don't know much about AD, think that once someone's in a CH, well, everything should be easier for you, the carer, shouldn't it? Little do they know.

I found it heart breaking when John could talk, and, at every visit, would ask "when can I come home?", but once he lost the ability to speak, I battled with myself on a daily basis, wondering how I could be so cruel as to leave him there when he couldn't communicate his needs.

I couldn't cope with him living at home any longer, but I couldn't cope with him in a CH either. It was a blessing in disguise for us both when, a few months later, this torture was finally over, and he was finally at peace. I truly believe that being in limbo, in a state of "Midowhood", is a nightmare for carers.

You are so right. There is no light at the end of the tunnel but ....... you can only do your best, and you certainly have done that. Sending a massive cyber hug xxx

 

[Grannie G]

Of course it`s not OK. Whoever even suggested it might be hasn`t a clue.

Visiting a family member with dementia in a care home requires acting worthy of an Oscar. Let no one suggest otherwise. Good visits make us wish they were at home with us, bad visits are traumatic. And still we smile [ or try to ]

There can`t be light at the end of the tunnel because we all know the final outcome but we have to keep going, keep visiting. What else would we wish to do instead!

 

[pamann]

Well said Grannie G l look forward everyday to the CH visit, even on a bad day he is so pleased to see me ☺

 

[LYN T]

I found it heart breaking when John could talk, and, at every visit, would ask "when can I come home?",

Scarlett, this must be one of the most difficult things to hear. Pete never once asked to go home-for that I was grateful. It's astonishing what we find solace in isn't it?

Love

Lyn T XX

 

[Saffie]

The perplexed look at the empty doorway when I'd left his room and peeped back around the corner to see if he was ok. I see it still and it breaks my heart.
Keep strong, there is no other way.x

 

[LYN T]

The perplexed look at the empty doorway when I'd left his room and peeped back around the corner to see if he was ok. I see it still and it breaks my heart.
Keep strong, there is no other way.x

We always 'peep' don't we? What got to me was seeing Pete in his bed or sitting on his chair, and looking so small and thin.

XX

 

[esmeralda]

This thread makes me cry for so much sadness. My husband is still at home, and I am so fortunate because his behaviour and physical needs are still manageable at the moment. No one knows what the future will bring but it reminds me to be grateful for every day we can still carry on. Very much love and hugs to all you brave and loving people who have had to make and live with such a heartbreaking decision.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[irismary]

I am in the same position as Esmeralda - husband still at home and I can cope. I think naively we think it will be easier if they are in a home but seeing the look on my husbands face and the confusion when I left him at the hospital recently tells me otherwise. Heartbreaking and i feel for you all. Part of me hopes if he has to go in a home he forgets who I am then only I will hurt. What a spiteful disease this is.

 

[Scarlett123]

I am in the same position as Esmeralda - husband still at home and I can cope. I think naively we think it will be easier if they are in a home but seeing the look on my husbands face and the confusion when I left him at the hospital recently tells me otherwise. Heartbreaking and i feel for you all. Part of me hopes if he has to go in a home he forgets who I am then only I will hurt. What a spiteful disease this is.

What an apt word. Yes, it is spiteful.

 

[Pete R]

When you just can’t cope any longer, your much loved relative has to move into a CH.. The one you have been looking after, will now be cared for by professional CH, staff. Some may think that henceforth everything will be OK.
Well actually it won’t. life will never be OK. again. Leaving aside the inevitable and crippling feelings of inadequacy and guilt, you will suffer a different and more insidious kind of strain, having swapped physical stress for mental stress.
You visit. Some visits are good and some are very difficult. The difficult visits knock you down. And make no mistake, even the good days take their toll. Keeping a smile on your face come what may, will sometimes take some doing.
You can stop visiting, of course, and probably your relative will not even know. If you stop and think about it, you may conclude that your visits are mainly for your benefit. But you will never be able to accept that they aren’t doing anybody any good. If only for your own peace of mind, not visiting can never be an option.
Life in a CH. is a life apart and can be very distressing. The knowledge that your loved one (I have tried to avoid using that phrase, but…..) is in there 24 hours of each day and, unbelievably, is there for life, breaks your heart.
It’s not OK., there’s no light at the end of this tunnel.

Crying my eyes out & feeling guilty that I could not visit my Mom today due to "fun run" road closures.

 

[Margaret79]

Oh Gringo I really feel for you. I have no words of wisdom but send you truck loads of cyber hugs. I wish I had a magic wand. xxx