Who am I now?

[Chuggalug]

I haven't got to that bit yet, but I would first probably get scrubbing my home, then slump out and read or play music, use the Internet, come on here, whatever. I'm too clapped out to do very much. If nothing else and if you are able, just go out for a walk. Take a camera. Breathe some fresh air. Make something you love for dinner. Spoil yourself if you are able.

Suddenly, something will come along that you fancy doing. When it happens, get stuck in.

Love to you.

 

[truth24]

How well you have put into words, Sad and Lonely, what I too feel. Yesterday I saw my husband in his residential home and he was happy and pleased to see me. Today I visited a dementia patient. I was not welcome, sworn at and told to go away or God help me. How things change from day to day, and I come home in such a different state of mind. Life is such a roller coaster and trying to get our lives together is so difficult when they still depend on how our loved ones are feeling on a given day.

Sent from my GT-N5110

 

[Loopiloo]

I have only just read this thread and how well this limbo is described.

My husband has had vascular dementia for at least 12 years. He was at home until late 2010 when he fell, fractured a hip, was in hospitals over 6 months, not allowed to return home, and has been in a care home just over 3 years.

Much written here I can deeply related to, and the limbo we find ourselves in. Over time I have not "got used to it" as many think one does.

But I am of the older age group, next month is our 56th anniversary. Now over the last two years or so I am also more restricted by health and mobility problems and so 'moving on' is something I can't realistically contemplate.

But I would like to find the time and motivation to sort of 'move back' and again pick up interests I can do at home, such as family history research, drawing and painting. But it has not happened yet, for a variety of reasons. That all seems so long ago, another life ago.

Helen, I do feel for you, having often asked myself "Who am I?". You are younger than me and I hope that some of the encouragement for you here does help, even if at present it is so difficult to imagine a different life.

You will always be Tom's carer, and advocate. He still needs you. But it does take time to adjust to no longer being a full time carer, having your man at home with you.

I echo all those who say take your time, and as Saffie said:

Just let yourself be whoever you are at any given moment.

I am not expressing myself well, but I am thinking about you and we are all here for you as you tread this different path ahead of you. A path many here are walking or have walked.

Don't be too hard on yourself, don't expect too much of yourself. It takes time to gradually accept and it is early days for you since Tom went into care.

All easier said than done, I know....

Loo xx

 

[Saffie]

But quite selfishly I realise that I would then be in an even worse case than I am now. It’s like some dreadful Chinese torture to realise that I want my wife to go on suffering so that I will not be alone.

You are right Gringo. Now my husband's suffering is over, I find I miss him more than ever.
When he was in the nursing home, I missed the husband I used to have.
Now I even miss the person he became as well and wish he had not left me and yes, I do realise that that it is probably selfish of me because he suffered so much pain.

When he was in the nursing home, I was still his wife.
Now I am his widow. I still can't get used to that word.
I was still able to care for him in a way. A different way, but still I cared. Now even that has been taken away.
Memories make me cry, music makes me cry.
Nobody sees this of course.
To them little has changed, I've been living here alone for nearly 4 years, so what's so different.
My whole world is different.

 

[sad&lonely]

Lord plant my feet on solid ground.

Thanks to all who responded to my last post, and the encouragement you have all given me. I believe we were put on this Earth to help one another, so in joining this site I may be able to give as well as take.
You may have gathered that I am a committed Christian, but that doesn't exclude me from life's woe's, Alz' being one of a long line. I am a down to Earth person, practical, caring, animal loving, artistic person with skin on, Oh, and I bleed too, especially when I prick my finger on a thorn in the garden, or the screwdriver slips and gashes my hand, causing me to utter a 'near naughty word', in frustration, that I should have to take on these chores single handed, before chucking the darn screwdriver on the floor, tending my wounds, and drinking copious amounts of coffee.
I was in care work for 20years, care assistant and sheltered housing warden, before cancer brought me to early retirement at 55yrs old. I am glad to say that twelve years later I am free from that, but am now suffering from time to time with my back, years of lifting in the job I had. Ever tried to put the embrocation cream on somewhere just out of reach? at one time hubby would have helped but he's not there any more. So what does a practical, down to Earther do? Put the cream on the back of a long handled bath brush? tried it, not really effective, put the cream on a plastic carrier bag, then try to dangle it down your back, grab hold with the other hand and pull it back and forth, hoping you get the cream on the bit that hurts? Did you know that some creams remove the coloured advertisment from carrier bags? so use a plain bag or you might end up with 'ASDA', or 'SAINSBURY'S' emblazoned accross your back.

 

[Izzy]

Ah! Coincidentally I was just wondering today hiw to get cream rubbed into my back. If is skoosh it on Bill now just looks at it and says 'that's nice'! I'll avoid those particular bags though!

By the way, welcome to TP!

 

[sad&lonely]

Gringo, It's not your fault that your wife is in a ch. Don't beat yourself up with Guilt. You have done everything possible to make her life comfortable it's nobody's fault that she became ill, but I must take my hat off to you for being honest, and brave enough to confess to sometimes wishing your wife were dead. You are not alone in this you know, wether it be wishing it for her benefit or ours, there comes a time when we feel we can't bear it any more, we're tired, frustrated, scared, sick of putting on a false smile or making a pointless joke to make her/him laugh, to lift the sad veil that leaves us with nothing left to say, and an uncomfortable silence hanging in the air. I had to stop myself visiting every day, then every other day, then every three days for the sake of my own sanity. I am now able to go once or twice a week, and take a week's holiday away once a year. Life goes on Gringo and it doesn't have to all be sad. Last year my husband was so poorly that I actually prayed that God would take him home, I more or less told my non responsive husband, between silent tears, that if he was ready to go, I was ready to let him go. Then the Doctor pumped him full of antibiotics and brought him back to more of the same pointless existance, and I said, "Why?" Even the staff couldn't believe it. God help me to understand. And so I carry on this game of snakes and ladders, up one day down the next. I don't have all the answers, but I know that one day he will be free, and I too will be able to move on.

I don’t know I came to miss this post, change the name and gender and it could have been written by me. I fear I can offer no answers to help, but I understand exactly what you are saying and how you are feeling. I have been in this limbo land for two years now and, apart from largely unsatisfactory daily visits, am still no nearer finding out how to live life on my own.
Go on a cruise people say, do this, do that, do the other. But all the time, in my mind’s eye, I see my wife sat in a CH. wondering where she is and why she is there.
On another thread I confessed to remorse for sometimes wishing my wife dead and so free from her suffering and daily indignity. But quite selfishly I realise that I would then be in an even worse case than I am now. It’s like some dreadful Chinese torture to realise that I want my wife to go on suffering so that I will not be alone.
I read sadandlonely’s post with interest and wished I too could feel as she does now having crossed the Jordan, with a renewed faith in God. I see no God's hand in this life that I would want to grasp.
As I prepare for another visit, not knowing how I will be greeted, I just feel weary, with a great pity for all those suffering this cruelty at the end of their lives. I shall return home after the visit, fit only to sit, with no energy or interest in doing anything else.

 

[Chuggalug]

Thanks to all who responded to my last post, and the encouragement you have all given me. I believe we were put on this Earth to help one another, so in joining this site I may be able to give as well as take.
You may have gathered that I am a committed Christian, but that doesn't exclude me from life's woe's, Alz' being one of a long line. I am a down to Earth person, practical, caring, animal loving, artistic person with skin on, Oh, and I bleed too, especially when I prick my finger on a thorn in the garden, or the screwdriver slips and gashes my hand, causing me to utter a 'near naughty word', in frustration, that I should have to take on these chores single handed, before chucking the darn screwdriver on the floor, tending my wounds, and drinking copious amounts of coffee.
I was in care work for 20years, care assistant and sheltered housing warden, before cancer brought me to early retirement at 55yrs old. I am glad to say that twelve years later I am free from that, but am now suffering from time to time with my back, years of lifting in the job I had. Ever tried to put the embrocation cream on somewhere just out of reach? at one time hubby would have helped but he's not there any more. So what does a practical, down to Earther do? Put the cream on the back of a long handled bath brush? tried it, not really effective, put the cream on a plastic carrier bag, then try to dangle it down your back, grab hold with the other hand and pull it back and forth, hoping you get the cream on the bit that hurts? Did you know that some creams remove the coloured advertisment from carrier bags? so use a plain bag or you might end up with 'ASDA', or 'SAINSBURY'S' emblazoned accross your back.

Thank God, I've met another believer here. As for the back, try a loofah on a stick to put the cream on. It might be a bit more helpful. Ever tried a TENS machine for your back? I couldn't get through the winter without mine.

So sorry to read of your troubles, sad&lonely. I'm glad you made it through the cancer. I've worked in a couple of nursing homes in the past so know a bit of what that's like.

Sending you hugs, xx

 

[navygirl]

Dear Helen
I feel how you feel and double
My dad was Dx with Vascular and my husband of 11 years left me all at the same time two years ago
I have no kids and no friends in this very rural area
I am not a wife or a mother or a carer and have no clue who I am apart from being a fat and once loved 54 year old
My brothers do not help at all but mum thinks they are golden boys
Dad abused me when I was young but I have had to set that aside as he is so ill
It is a complicated awful illness and I don't have any advice other than be glad you have a supportive husband
I am sure you are.
I wish this wasn't happening to us but it is.
Big hugs
Navygirl

 

[nellbelles]

I am not at home this weekend.

So it means I have left Tom in the CH without any visitors for four days.

Do I feel guilty, Yes absolutely, did I think about it too much, well no, I just phoned a friend and said can I escape to yours for three nights.

Is is self-preservation at this time? Yes! I'm afraid that with recent health issues I needed some time to regroup my thoughts.

The sensible part of my brain says all of us with a loved one in a CH or NH need space to keep ourselves safe as well.

My heart says I should rise above that, and keep Tom's needs for company as my priority, his care needs are being met to a point, but because he won't come out of his room his social needs are not. BUT I couldn't do 24/7 when he was at home, so realistically I cannot do so either in the CH.

I personally depend on all the support of you all here on TP, I hope that in some small way what I have learnt may help someone.

Thanks all for your replies.

 

[garnuft]

Goodness knows, Helen, you tried your hardest to keep up some kind of 'normal' routine, you tried longer than most would be able to manage.
You deserve a medal as big as a football but I know you wouldn't want one.

Tom is safe and as well as can be expected, you need to heal a little now, you need to heal a lot.

The stronger you are, the better you can support Tom in this dreadfully trying part of your lives.

Have some peace, take some peace, find some peace. It will make you stronger. XXX

 

[Grannie G]

I hope that in some small way what I have learnt may help someone.

Do you know Helen, I think you are learning too. The tone of your posts is changing and I feel you are reaching some form of acceptance of how things are.

You are also realising you need to look after yourself too.

It`s not for rejoicing, it never is nor will it ever be, but it is the realisation of compromise , which is as much as we can hope for.

Enjoy your weekend. xx

 

[Saffie]

I apologise for my post on here last evening.
I know it upset someone I would not wish to upset and if it upset anybody else, then I am deeply sorry.

Please be reassured by my saying that I am aware that my grief is partly caused by the wish that I had appreciated more what I had before I lost it.

When I feel the need to express my feelings, I will attempt to keep it for my own thread alone now and will try not impose them on others.

I'm sorry to have written this post on your thread too, Helen.
Again, sincere apologies to all. x

 

[Teanosugar]

You are the most important person in Tom's life

Today there has been quite a few reflective posts as we all come to terms with where we are now.

I don't know who I am now!

I am Tom's wife.. Yes..

After 25 years I am no longer his carer 24/7.

His day to day life doesn't involve me.

What he wears, what he eats is no longer anything to do with me.

He knows who I am and is so pleased to see me, his words, 'I am so grateful you came to see me'

Tom is safe, not happy but safe, which I could no longer guarantee, I could not provide a safe environment but it doesn't mean I am at ease with how things are now.

Like so many here on TP I have to find me again.

I have forgotten how it feels to do what I want when I want.

I have forgotten how to be me.

I could just go out tomorrow and do as I wish, but I don't wish, but I know I have to one day.

Me who am I?

You are the most important person in Tom's life and as such need to keep strong for the times when he will need you to advocate for him. Visit a lot until you find your feet then you can visit a little less. You have walked a long road, now you find yourself on a different path, one that leads to many other roads. Do not be afraid to walk the path, see where it goes, find the new you, the strong you who has time to unwind and gather strength again. You have already taken the first steps in posting on here, you have self evaluated yourself and will continue to do so.

Good luck on the path, and whilst wandering stop off at the odd place and make some new memories.

 

[nellbelles]

I apologise for my post on here last evening.
I know it upset someone I would not wish to upset and if it upset anybody else, then I am deeply sorry.

Please be reassured by my saying that I am aware that my grief is partly caused by the wish that I had appreciated more what I had before I lost it.

When I feel the need to express my feelings, I will attempt to keep it for my own thread alone now and will try not impose them on others.

I'm sorry to have written this post on your thread too, Helen.
Again, sincere apologies to all. x

Saffie

I have read and reread your post, I can find nothing at all for you to apologise for.

I take a lot of comfort from your posts to me they are alway compassionate and understanding.

Helen xx

 

[jeany123]

Saffie

I have read and reread your post, I can find nothing at all for you to apologise for.

I take a lot of comfort from your posts to me they are alway compassionate and understanding.

Helen xx

I agree Helen, I can't think how Saffie would upset anyone, unless I am missing something,

I hope you have a peaceful time away Helen

Jeany xx

 

[Saffie]

Thank you Helen.
I do know how hard this time of adjustment is for you and hope it becomes a little less so as the weeks and months go by.

Tom's added sight problem makes it so much harder for you both and I do sympathise so much.
love xxx

 

[garnuft]

I can't see anything in your post that could be considered as upsetting either Saffie.

I am sorry someone was upset by it and can imagine that distressed you, I'm very sorry about that as you have so much on your plate at the moment and could do with some support yourself.

I hope you are having a peaceful Sunday and Helen has kicked off her shoes and is having a lovely time with her friend. xxx

 

[Saffie]

I don't think the post offended anyone, Gwen, more that the feelings I expressed were perhaps too emotional so made the person feel they shouldn't have posted as they did. That has made me think that I should reserve such feelings for my own thread so that others can ignore it as I really don't want to upset anyone, least of all the person who was so.

Thanks for the reassurance though and the wish for a peaceful Sunday.
If completing tax forms - Dave's possible tax refund(I wish!) and my so-called bereavement one - can be called peace-inducing, then it is!

 

[Scarlett123]

I can't see anything in your post that could be considered as upsetting either Saffie.

I am sorry someone was upset by it and can imagine that distressed you, I'm very sorry about that as you have so much on your plate at the moment and could do with some support yourself.

I hope you are having a peaceful Sunday and Helen has kicked off her shoes and is having a lovely time with her friend. xxx

Couldn't agree more! I too have read the post several times, and at first I thought I was missing something really obvious that everyone else could see, like the Emperor's New Clothes! Saffie, you are kindness itself, and if someone has contacted you to say they are upset by your post, I can't see why.

I too hope you're having a peaceful weekend, and that Helen is having a great break.