Out of the blue

[Unhappy15]

Hello fellow travellers,
I say that because we carers have a long difficult road to follow. Just when you feel that you are on a little bit of smooth road, you just don't see the bump ready to knock you off course.

I thought that I had most things under control as we enter the third year of my husband being in care. I had started to feel a little less guilty and perhaps a little more relaxed, I visit every day just to make sure everything is ok. Then today I looked at him and I could hardly breathe, I just wanted to hold him forever, he looked so confused and fragile.

I always read TP daily and some of the heart rending posts make me realise that I am fortunate that my husband has the money to pay for his care. With that said, I don't want this half life, being a widow in waiting, I want our life back the way it was but of course that's not going to happen, I hate this illness and the devastation it causes.

 

[LadyA]

Hello fellow travellers,
I say that because we carers have a long difficult road to follow. Just when you feel that you are on a little bit of smooth road, you just don't see the bump ready to knock you off course.

I thought that I had most things under control as we enter the third year of my husband being in care. I had started to feel a little less guilty and perhaps a little more relaxed, I visit every day just to make sure everything is ok. Then today I looked at him and I could hardly breathe, I just wanted to hold him forever, he looked so confused and fragile.

I always read TP daily and some of the heart rending posts make me realise that I am fortunate that my husband has the money to pay for his care. With that said, I don't want this half life, being a widow in waiting, I want our life back the way it was but of course that's not going to happen, I hate this illness and the devastation it causes.

This is one of the losses of Dementia that you are living through, @Unhappy15 , and of course you will be hit with grief now and then. Quite right and proper, I would say, to grieve the loss of your shared life, your future hopes and plans. Some years ago, one of TP's members coined the term "midow" to describe your situation. Not a widow, yet you have, in a way, lost your spouse to dementia, leaving you in a sort of no-man's-land

 

[Casbow]

This is one of the losses of Dementia that you are living through, @Unhappy15 , and of course you will be hit with grief now and then. Quite right and proper, I would say, to grieve the loss of your shared life, your future hopes and plans. Some years ago, one of TP's members coined the term "midow" to describe your situation. Not a widow, yet you have, in a way, lost your spouse to dementia, leaving you in a sort of no-man's-land

 

[Casbow]

Hello unhappy. I absolutely know how you feel. My husband has only been in a home for 6 months, I feel that I have been getting better with the situation but then today he had his hair cut. It was by a different lady that he didn't know and he became so distressed. After that there was some singing entertainment which he struggles with because of the noise and lots of people. He was in such a state, some kind of fear I think. I wanted to take him away from everything and make it better. I hate to see him suffer. He was such a lover of music and dancing. So terribly sad. This awful illness just chips away at us and we can do nothing to make it stop. I hope your next visit is better.xxxx

 

[Scouts girl]

It doesn’t get any easier as the journey progresses. I just want to gather my lovely mum in my arms and hug her forever.

 

[Lilac Blossom]

Dear Unhappy, My husband has been in a care home for five months so I share the heartbreak and sadness and, yes, guilt that we fellow travellers experience!

I came across the term "midow" on TP a while ago and for me it does describe the position we are in, a kind of no-man's-land that most people have no understanding of, apart from the lovely people on TP who share experience and encouragement.

I visit OH most days and, like Casbow's husband, J is distressed by loud noises and crowds - in fact anything unfamiliar - he seems to be frightened most of the time - it's so sad and I just wish I could pick him up and take him home again.

I take comfort from posts on TP but I feel that I shall always feel this heavy weight of sadness thinking of how much dementia has stolen from the life we should be living.

Lilac x

 

[Unhappy15]

Thank you all. I am so glad to to be able to talk to others who understand just what we go through every day. I'm sure everyone has these 'trigger' moments but when they hit they just floor you.
Recently at the home when they had entertainment it was the song ' We'll meet again' that had me in floods of tears that go on for days. I just get to the point where I am sick of crying, does it ever end? Five years of his illness has left him a shell of what he was and me shattered.
Apart from the kind people on TP there is little or no help with the struggle we all go through on a daily basis.I really feel that no one cares for the carers and a lot of what is out there is just lip service about the situation.

 

[Onmyown]

Gosh my mum is not in a home yet thank God but I so get the tears, it's so hard to be happy and I'd say I cry everyday that she does something or says something. It's like a cruel torture watching them go into thier own little world. I too hate this illness. Time left with your loved ones should be about doing things, happy things before you go but mum just is happy to sit and watch TV all day long. Used to love shopping, meals out, but all that is a huge effort for her so very very sad to watch think my heart breaks everyday. She dosnt talk much anymore but she's happy in her little world for now.... Hard to

 

[BazArcher]

Yes Unhappy15 its a sad ol road we wander along, had a similar moment last week, having finally got a bit of respite for myself was left wondering what on earth to do for a whole 6 hours, strange after going nearly 3 years as well with no support.
Tuesday came and bus popped along to pick OH up for day centre overjoyed she was and I was feeling ok till I got back in the house and was "happily" cleaning the oven grills and suddenly just started crying for no reason whatsoever, stood there at the sink for about 10 mins thinking I really don't need anymore hot water in the bowl couldn't help myself.
I think now looking back it was more the feeling of like blimey she is worse than I thought and hadn't noticed till she wasn't there even the dog walk felt terrible I guess it was just one of those days and sadly I know as we all do they will continue and the struggle will get harder.
Just hang onto those good days cos they will still be there just a tad harder to see for us

Baz