In limbo

[Tender Face]

Wonder if anyone cares to share their experience when a loved one first goes into a care home? I'm struggling. But I'm not quite sure what it is I'm struggling with. Or perhaps I do and don't really want to admit it .... Mum is in wonderful hands ... after some terrible experiences I am overwhelmed by the quality of her care ...without exception every nurse and carer on her unit are superb ..... they treat mum with great respect and indeed affection .... and in return she thinks the world of them. I should be happy. But I'm not. Truth is I'm jealous. These people now know more about my mother than I do ... her eating pattern, her sleeping pattern... I don't even know what meds she is on anymore ... (constantly changing to control her pain with the cancer admittedly) ....how I long for the days I was cursing the constant trips to the chemist .... or spending hours cooking special dishes to tempt her appetite .... someone else is taking care of all that .....

Mum isn't even hankering to 'go home' ...she has just settled into some blind acceptance of where she is without questioning why. As I had hoped, her dementia seems to be protecting her from her diagnosis and prognosis ... there can't be many instances when someone can be glad at such a marked and sudden decline?

I've lost control. Should I not be glad she is in expert medical hands and someone else has the responsibility of her care while I concentrate solely on her emotional well-being? Maybe I'm struggling to accept defeat - that I intended she always remained in her own home and I wasn't able to achieve that for her ......? Not that it matters anyway now ... she seems to have forgotten 'home' ...... My feisty, independent mum, so compliant and dependent now I barely recognise her from six months or so ago ......

I've lost the whirlwind life I have been living for the last few years ... and the zillion projects I wanted to pick up when I ever got the time again are still there ... as neglected as ever .... I guess I am trying to define exactly what it is I have lost ... and feeling totally lost .....

Sorry to ramble, thanks for listening, Karen, x

 

[twinone]

Hi Karen

Just read your post and I totally understand what you mean.

When Steve was in hospital I hated every minute of it, I wanted to be with him all the time. Just knowing what was going on medically and how he was feeling if I wasn't there with him, worried if he was frightened or thought that I had abandoned him.

I too wish that I could have the last seven weeks back when he was home with me looking after him 24/7. It was so hard to do and at the time I didnt know how much longer I could cope watching the decline in him and feeling anxious myself all the time, but I still wish I could have him back even though I know it was best for Steve, he suffered so much.

I think everyone who has watched and cared for someone with this horrific disease will never forget whether it was over a long period or rapid like Steve's illness.

I too was going to lots of jobs that had been neglected but I still cant push myself to start decorating or sorting through things that have needed doing, I just do the necessary, cleaning, ironing and washing. I suppose I will know in myself when I am ready to start my new life ( I sooo dont want to ).

I hope it reassures you that probably most people think like we do and that you find some kind of peace that your mother is being well looked after and she is unaware that you are not with her all the time even though you want to be.

She will know how much you love her.

Lots of love
Janet

 

[Brucie]

Hi Karen

excellent post!

I found that I couldn't at first cope with the bit of life I got back. I would sit at home staring into space, a bit like a robot awaiting new instructions.

I lived for the time I was driving to and from, and spending time with Jan.

After several weeks instead of going under the motorway to go home to sit, I hung a left, put my foot down and went on the motorway and came off many junctions later at a large M&S and spent time just wandering aimlessly there.

After that I started to regain a bit of life, though always hankering to get to the home to see Jan again.

At this stage Jan simply was no longer in a condition to want to go home - so I was spared that pain.

someone else has the responsibility of her care while I concentrate solely on her emotional well-being?

I still feel I have the responsibility to oversee Jan's care while I subcontract the minutiae to the people at the home. So I supervise and put spokes in from time to time, ensuring they advise me of all changes.

This week they suggested it was time for her to go on a pureed diet and I agreed. She has eaten more happily since.

What I found I had lost was one part of my life. I have since developed several others because a single one now could never make up for the brilliant one we had together, when we were younger.

Distraction therapy is a great way to cope with one's limbo.

best wishes

 

[Mameeskye]

Hi Karen

(((((((((((((((hugs))))))))))))

It is hard to recognise that you have not really had a chance to grieve and I think that once you get your space from the day to day care you realise that a step further down for your Mum has come.

Now you have to realign your thoughts and expectations once more. What seemed absolutely horrible to you before is now "a good time". However with your Mum moving into care this time you are having a lot more time to recognise the grief that her illnesses are causing you as you are not swept along in the maelstrom of day to day care.

At this stage I always read mum's care notes, chatted with the staff. Like you I was sad to see her care taken over, but then, remember that you know the spark that is your Mum better than any of the carers and nurses, even after years of physical care. Yes she will be fond of them, but at the end of the day some part of her will know you.

The time has come for you to try to let go of the minutae but to deal with her spirit and be there for her, to hold her,to sometimes undertake the day to day care but maybe even just to sit and hold her hand while listening to music and watching TV. These are very very important tasks that even the best NH struggles to provide adequately,because they are not you.

It takes time to deal with the feelings but each turn and change brings out regrets and thoughts that you have to deal with. Slowly you will find the void filling with emotional care for your Mum, time again to enjoy with your family and most importantly time for yourself so you can sit and think quietly to put your own feelings and thoughts into perspective.

It is so very hard and happens so many times with the illness.

((((((((((((hugs))))))))))))))) to you at this hard time

Love

Mameeskye

 

[jc141265]

Hi Karen,
Perhaps in a way you are grieving and thats why you are having trouble moving on and taking advantage of your new found freedom? For even though your Mum is still here on this Earth, you have found that you no longer have the Mum you remembered, you no longer have the Mum who needed you, you no longer have that shared love that you could tangibly feel if she showed signs of wanting to come home. So I think you should not worry too much about not being able to move on just yet, and listen to your mind, it will tell you when you are ready.
I guess I kind of felt the same way when I visited Dad last weekend as he was no longer needing me, nor responding to me in a way that I could recognise as an emotional attachment. I think in that thread of mine, I too used the word 'limbo'.
It is good however that the care home is so good, I read your comments about the care home staff knowing your mother better than you now with envy. When Dad was in the home I was forever frustrated and upset, because the care home staff only thought they knew Dad and I desperately wanted them to understand him better so that he could get better care!
Anyways I'd best get to bed...work and exam study all week for me.
Don't stress, just give yourself time.
Best wishes as always.

 

[TinaT]

Your feelings so well express the sense of loss and grieving which I'm sure has struck a chord with many of us whose loved ones are now in a full time care situation. I grieve for the future together we thought we had and for the speed in which our present situation hurtled at us.

I have had a year of grieving and feeling the heartache of allowing others to take over the daily care of my husband. I will always carry the guilt of passing this responsibility over to others. It has been such a struggle to know that I have let go of this side of our relationship.

I do think that now I am relieved of the responsiblity and exhaustion which being a sole full time carer of my husband brought on, I love, respect and admire him even more. I respect the way in which he fights so hard to keep what little understanding he has and how much he tries to make sense of his world. I am so grateful for the love he still has for me and for the sense of comfort I get when I am with him.

I am in enormous respect for the workers in my husband's Care Home who are unfailingly pleasant and hard working. I still do have 'hands on care' when I am with him and the staff at the home understand my need to continue to physically care for him as much as I can.

I realise from your post that because your mother doesn't seem able to respond, that you feel have been robbed of your mother's love but as others have said, the bond between you both is so deep that, no matter how tenuous, it will always live on between you. You can gain some comfort from the acceptance of her situation which your mother has shown. She is comfortable and well cared for in her present situation. You have done the very best you can to maintain her well being.

It is very hard to find peace of mind in our situation but it is important that we try to achieve some sort of acceptance, not only for ourselves but also for our loved ones. They need all the love and support we can give them. I hope that you can get some comfort from knowing that you will always be there for her, no matter what.

xxTinaT

 

[christine_batch]

Dear Karen,
In limbo, that is what I have felt for the last 15 months that Peter has been in the E.M.I. Unit.

When I see them doing the things that I use to do, it hurts big time. Many times I feel like saying - just a minute this is my husband. Peter no longer knows me but he respons to staff (he is the favourite on the floor) so placid but he was always like that. Checking his Care Plan and medication.

I know the last 5 years of caring for him was so hard and I hated it when the Consultant addmitted Peter to the Unit. But I knew that he needed the 24/7 professional care.

When I read what others are going through, I feel envy, wishing I was still able to care for my husband. Anger that my disablity stops me doing so many things.

My house is just that, I no longer call it home. Peter is not here. Having to reasses my life. Going over so many things. Last Saturday my Grandson's wedding before he went to Iraq, missing Peter absent from another family get together. When my Grandson had a drink for his Grandad, the pain was so bad. Then coming back to this house and the loneliness from being with my family to a empty house was horrible.

I have gone over my diaries for the last 5 years - what could I have done differently. The Consultant said I gave Peter two extra years at home and that I could not have done any more for him.

Although I am a placid patient person, I no longer have time for the people who moan for little things.

This illness hangs like a very heavy cloud over us and I wish I could see even a glimmer of sunshine but I cannot.

Send you love and to your Mum
Christine

 

[Kayla]

Dear Karen,
I too felt in a state of Limbo when my Mum had to go into a Care Home. She had fallen several times and been taken to A&E and she'd also completely lost track of time. She became unable to look after herself properly, because of her rheumatoid arthritis and very painful joints, which were needing huge quantities of steroids to reduce some of the inflammation. Mum also suddenly forgot how to operate the washing machine and video recorder and was not taking her medication correctly.

It was a relief to know that she was being well looked after, but it would have been so good to have been able to make a cup of tea when I visited her room in the Care Home. It seemed rather a shame too, that although Mum had been just about coping with her own laundry at home, the Care Assistants put all her clean washing away in the drawers for her. They also reorganised everything that I had done when she arrived, so quickly it became apparent that there was not much point doing anything to try and help.

After several years of Mum being dependent on me for nearly everything, it was hard to be only a visitor, especially as it was hard to have a conversation with her and if I was busy doing things for her, it seemed much easier to chat about what was going on. When Mum went into the Nursing Home after her fall, I always took something to do with her or for her. Perhaps a bunch of flowers to be arranged in a vase, a book of photographs to look at, a box of dominoes or maybe some new ornaments for her room. I tried to swap them around from time to time as there wasn't much space on the shelves.

I think that it is very hard to adjust to changes and once a relative is in a Care Home, there is more time to observe them and realise that they need far more help than one person can possibly manage on their own. It is a shock to see how poorly they've become and there is little that can be done to improve their state of health. It is also difficult to accept a loss of control over aspects of everyday life in the Home.

My Mum died last year and I seem to be remembering more and more of how she was before she became very ill. It is as though the process of grieving has been taking place over several years, which is hard to come to terms with. I am glad that Mum was close enough for me to visit her several times a week and the staff in the Homes were professional and caring.

My thoughts are with all of you who are caring for a loved one at home or in a Home.
Take care and look after yourselves too.

Kayla

 

[Tender Face]

Bless all of you for sharing and so quickly .....

The word I have been struggling to find and has now filtered in is 'redundant' ......

My grief is for myself and my loss of a role .... time to move on, redefine and stop being so selfish ....

Thanks all for helping me to work it out .....

Love, Karen, x

 

[Taffy]

Hi Karen,

Your not selfish or redundant you have a new role, one of 'overseer'. This role is important just different to the one your use too, your mum needs a strong and gentle hand and in you, she has this, that's very important.

Your the life line that overseers to the very best of your ability, that your mum is safe and well cared for. Love, Taffy.

 

[fearful fiona]

Dear Karen,

Pretty much everyone else has said it all, but I have had the same feelings since my parents went into a care home last October. Very confused, guilty and all the rest at first. My father died in February (it was expected) and he couldn't have been in a better place. My Mum like yours is now in a lovely place, where they seem genuinely fond of her and I can't fault the care and nursing help. She is occasionally violent, but they seem to take this in their stride. And I do have to admit that in most things, they now know her better than I do.

Having gone through a very difficult year, I now (almost) look forward to seeing Mum. All her needs are looked after by those far more qualified than I and we can spend my visits having some quality time together. Not that it isn't awful to see her decline, but nothing is going to stop the decline, and she is in such a lovely place, I couldn't wish for more for her.

 

[Grommit]

The post really set me thinking Tender Face.

I have not yet reached the stage of handing over Jean's care to total strangers but i bear in mind what the psychiatrist said to me when Jean was first diagnosed:-

"If I were you I would put her in a home now and go away. She will not notice you have gone. If you have any thoughts about looking after her yourself, forget them.

Bear in mind this. In a few years time, you could have the disease. who is going to look after you? Live now whilst you can.

We do not know how it starts. We cannot control it when it does start.

So go away now and before this all gets you down and becomes unbearable"

Was he right?

 

[Skye]

Was he right?

Yes, of course he was right -- if we were robots, with an on/off switch!

But we're human beings, programmed with an infinite capacity to love and to care. And there is no off switch.

Would any of us have wanted to go through life without ever loving or being loved? Certainly not me!

I've had the good times, the wonderful times. Now I'll take the pain.

 

[twinone]

I agree with Hazel

I think he sounds like an awful man. Perhaps he has never loved anyone.

I would not have missed one second of Steve's life, I married him in sickness and in health.

Lots of love
Janet

 

[LIZ50]

Karen - you certainly are not redundant where your Mum is concerned even if your role has changed. If you stopped going to see her she would certainly miss you and even if you don't have to do the things you used to do for her you are still giving her something so valuable and precious - your time and love.
Whenever a loved one goes into a home or hospital I guess we have to learn to take a step back and let go a little no matter how hard it is to do.
I had to do it with Mum when she had to be taken into hospital a few days before she passed away and even thought I had looked after her 24/7 I was no longer in control of the situation and that really upset me. They wouldn't let me do anything for her and even though the palliative care was wonderful I still felt like screaming at the nurses and saying 'hey it's MY mum and I have been looking after her you know?'
Sadly enough, I am now in a similar situation with Nick's mum as she had a severe stroke a few weeks ago and now the family have to find her a nursing home as she needs 24 hour care. She is in hospital at the moment and when we go to see her, again, I feel as though I'm not in control as the nursing staff are seeing to all her needs and I know that Nick feels just as helpless. All we can do is hold her hand, help her with her drink and talk about whatever we can as she has lost her speech and just mumbles things which we have to try and work out.
Life is so hard sometimes and grief is such a part of life and it comes in so many forms. You ,Karen,like Nick and I, are grieving for the mum that is still with us but is no longer the mum that you have grown up with and never will be again and I am also grieving for my mum who is no longer with me but who, hopefully, has gone to a more peaceful place.
One thing for sure, I certainly agree with Christine when she says she no longer has the time for people who moan for little things!
Love Liz xx