A lonely frightening time.

Dear Calpurina, I haven't been through exactly what your going though but my husband died unexpectedly on christmas eve 2017. We were about to attend his daughter's funeral but he felt unwell and ended up in hospital. To cut a long story short he had a brain stem infarction leaving him with locked in syndrome. He could only move his eyes but knew everything that was going on around him. He died 5 days later. It took me 4 hours to drive home and the courage to walk back into my house. I tell you this, not for sympathy but because since then I have sold my property and moved into a tiny flat. All this out of my comfort zone and I am now experiencing grief. I have been living on adrenaline but now it's real. I know what you're going through, all I can think about at the moment is death. You are strong, stronger that you know, I do hope you find some peace in all the turmoil. Sending you love and best wishes xx flowers

Your GP is correct about the anticipatory grief. When this is being experienced, often no-one in the family is being their own 'authentic self'. This adds to the strain with everyone playing the role that they think others expect of them. If you could find the strength when one of your family asks how you are to say "We need to talk about that", you will have opened the door for everyone eventually to say that they may be struggling with the situation and to admit that they are afraid desperate and unhappy. It gives everyone including you and your husband permission to say how you are really feeling and for others to say they understand and are there for you. It is exhausting for all of you to pretend all the time.

Sorry but not sure if you are meaning your husband has been given a prognosis of a very limited time. If that is the case you need to speak with someone just to vent your feelings. If you have a Maggies Centre near you or even a Hospice they usually provide support for family members and can help you with your anxiety about the situation you are in. If on the other hand your husband gas an 'open ended' prognosis again you need to speak with someone. Again the two kinds of organisations mentioned will help. Also McMillan Nurses have chat and phone lines. If I can say my husband had one kind of cancer 21 years ago (surgery, chemo) then another type 13 years ago again surgery radiotherapy. All was well until two years ago when the second cancer reared its ugly head again. Treatment hasn't worked so far and now waiting on scan to see what options may be. My 47 year old daughter died of breast cancer in April this year. So what I am saying is there are people out there who will listen and understand what you are feeling. Don't dwell on the negatives as let's be honest there is little we can do to change them. I learned this with my daughter's death. You have family, listen to them. They are looking at the positives and there will be many of them, even in your situation.

I am overwhelmed by everyone’s kindness and support. Reading all of the replies (again and again) has helped me tremendously.

Apart from the awful mentally draining thoughts and worries I have developed physical changes too. I have always been a very strong capable person and I know that even my closest friends would be astonished to think I wasn’t coping or needed to share my feelings on GN. I am the one who people turn to for suggestions and ideas.

I now find myself saying “watch what you are doing” such as when I am driving, even down to ordering drinks or food when I take my husband out. At times my nerves are so frayed I find the simplest tasks difficult and my usually sharp capable memory is in a fog.

I know it would help if I could talk to my family about the way I feel but this is not possible. No one asks me how I am or how I am coping. On the rare occasion in the past that I tried to tell my sons and their wives how I feel my thoughts were sadly instantly dismissed.

I know they are worried they love their father and now accept this is how they are dealing with their concerns.

I was told “we all have to die sometime”, “you could die before him” “don’t worry”. Etc etc...... This has stopped me sharing my thoughts as I do not want to appear needy or unable to cope.

Thank heavens for the depth of wisdom and caring I have found here on GN. Knowing you understand has helped me more than words can say and I am taking your ideas and suggestions on board. I am sorry so many of you are going through difficult times through various health issues and send a big hug to you all.

It’s very hard when that person is in denial and others don’t see it from your perspective. Can you get away by yourself at all? Even for a day or two.

My DH has early dementia, but recently showing signs of getting worse. He is in denial too and family, not being there 24/7 don’t see the worst of it.

I got away for 24 hours recently (took train to meet up with friends and stayed overnight). Just the change of environment, no worries, talking to a different set of people, etc. has helped recharge my batteries.

Best wishes to you xx

Anna yes I would love to do this but I feel guilty for leaving my husband on his own (while I go out on a “jolly”). I was offered six sessions of counselling through our local Carer’s Centre. Each time I had to lie and tell my husband I was going to the Library. As he is in complete denial it would have wondered why I needed counselling.

Friends have actually told me not to worry as a I will have plenty of time to enjoy myself and get out when the time comes (!)

I have always been independent and before my husband’s diagnosis. I would often take myself off for the day visiting exhibitions, art galleries and museums. I used to really enjoy stopping for a coffee as someone else had made it. I do find being so restricted now particularly hard. I was involved in volunteering and a ramblers groups both of which I had to give up.

Calpurnia I realise this may not be needed yet for you but during his last weeks when I could no longer manage on my own the local palliative care team arranged for two carers to come to help and they told me to just go out for a walk while they stayed/helped/chatted to DH. I used to walk to a local McDonalds grab a cappachino and just sit for half an hour watching the comings and goings. It was only a simple thing but it helped me face the day.

I am planning to go to Cornwall with my family for 5 days next month. I have not yet told my OH this and I know I will be in big trouble! But I have to be realistic and recognise that I do need a break from the constant demands - worrying endlessly about care costs, listening to his constant anxious/paranoid ideas, trying to calm him down, wiping his bum - and all the rest! I need to just have a few days when all this negativity is wiped away.

Yes - I do feel guilty, as I know he will not like this - but I have to grab at chances to have some normality in my life in order to stay even passingly sane. I cannot help him if I am worn out - and recently I have found myself getting slightly irritated with him at times - not great, but I am only human.

Those of us who have a partner who is ill do need to salvage moments of peace and pleasure from the general run of things. So do please put some priority on yourself as well as him - seek out moments to enjoy - it is alright to continue to find things to enjoy - please look after yourself too.

Calpurnia, I dont know your friends but what a thing to say. You are facing losing your life partner. I am assuming (perhaps wrongly) that they still have theirs. Anyway, if there are groups you have had to leave, that is a shame but you do need time to yourself. Even if, as another poster said it is just a coffee outside. A change is as good as a rest. I would still approach Macmillan or a cancer charity of some sort and get as much support as you can. If you get the offer of help, take it. No matter how big or small. Eventually Calpurnia the situation will change , but it will mean adjustment to a different kind of life. I am sure everything you are going through now will give you the strength when that time comes. You are not alone. It is an awful time for you, but you are stronger than you think. I dont know if you are religious or not, but one thing I have found helpful to me is The Serenity Prayer. You could google this if you don't know it. Maybe some would think its a bit daft me asking you to look for this, but it has helped me. The other is a prayer called Footsteps. Will be thinking about you and remember, you are never alone and you will be ok.

Talk to Macmillan or your local hospice (if there is one) as they will have trained people who can help

I am registered with the Carers Centre and they have been very helpful. We had a visit from a most lovely caring Palliative Nurse from our local Hospice. This was as a result from an appointment with our GP when my husband told her his cancer had been removed.

She was very supportive and left me with information and important telephone numbers “for when the time comes”.

I find it hard to imagine the future. My DH is so well right now, although he does get tired more easily now. I keep thinking (hoping) we will “get away with it” and we will carry on like this for years,

Like another poster said on the days when he is not so good, isn’t very hungry - all minor comments that we all make from time to time my stomach lurches and I think...”is this it?” I am constantly on the alert for any change in symptoms and this is both worrying and tiring.

Reading this back sounds exaggerated and irrational but this is how dealing with this awful situation has affected me. I can’t share these feelings to anyone as I feel I must always be in control of everything to keep my husband safe.

I haven’t heard from anyone in our family this week. It would be lovely to get a phone call to see how we are. I do get an odd quick text message “hope all is well” but it is not possible to say how things are in a few cold text words. When I have attempted to say how I feel I am simply told to “don’t worry”. I wonder if the time will ever come when my husband and I can talk openly about his/our future.

No one has given us a timescale for the progression of his untreated cancer. The Consultant did say that the results from his last scan “did not worry her yet”. I realise it is impossible to predict the time we have left. Realistically it is limited. I am constantly being told “We are all terminal - you are too, stop worrying - you could die tomorrow”. (not helpful!)

Reading all your wise responses has been so very uplifting and has given me encouragement. Thank you all and very kind wishes to everyone who has been through and going through now this difficult time.

Dear Calpurnia I know a bit about what you are going through because my mother was diagnosed with terminal cancer and we were told at diagnosis that nothing could be done. I collapsed from the shock that day, I literally folded in half and fell to the floor, it was like being punched. I then had to pick myself up and stand with my siblings to support my Mum, the hardest thing I have ever done. She swung from acceptance to complete denial and we had near on another two years with her.

Looking back, it was a very special time and I am grateful for it, as hard as it was. When she was in denial, we just went along with it, e.g. "planning" a holiday a week before she died. Then at other times, she would talk to us about when she would no longer be with us and we could say our goodbyes.

I don't know whether you are a reader - I find reading therapeutic. I've just read I Found My Tribe by Ruth Fitzmaurice, a young mother of 5 children whose husband is diagnosed with MND. It is the most joyous, uplifting book I have read in a long time, a chronicle of how she dealt with his impending demise in a life-affirming way. Google it, it is a fantastic book.

xx

I'm so sorry that you are living in this situation Calpurnia. It must be a dreadful strain on you.
My situation was and is very different to yours so I won't go in to it. However, through it I did discover the online Sue Ryder support and forums. They appear to be discussing topics that you may find relevant. Sorry if someone else has already suggested this.
Hope you find some support and comfort.

Calpurnia I am not in your situation but did not want to ignore your post.
Feel free to come on here and vent.
I have recently been diagnosed with cancer and found that my DC reacted differently. Hopefully mine is not yet terminal but I am finding that the longer it goes on the more my DC are accepting it. I do hope your DC come round and enable you to talk to them. They are too processing at the moment and fearing the worst. If they text you again asking how it is going I would be tempted to say - not so good at the moment, would be good to talk to you. If they call tell them how much better you feel at the end of the chat. They need to feel they are helping.

You have my sincere sympathy. I have been in the same boat for a couple of years although it seems my OH is now stable and improving. Don't try to be too brave and don't beat yourself up if you don't always deal with things the way you think you should. You are human. I don't really have anyone to talk to on a regular basis but vent freely when I get the chance to meet up with close friends. I am trying to squeeze something positive out of this situation by starting a petition to reduce the waste of NHS funds. The link is below if anyone is interested. I wish you all the best. You are stronger than you know.
chng.it/6pRxqwHyZK

LucyM
A beautiful heartfelt post.